My Experience with the Gluten Challenge

When my  new GI doctor told me I needed to start consuming gluten again to get an accurate diagnosis, I was immediately confused and conflicted. For 2 years I’ve mastered the art of living gluten-free and wasn’t even sure I wanted to go this route but I wanted to get answers so I agreed. That was in October right before we moved to Virginia.

I finally got into a GI doctor here, Dr. Solomon Shah in Fairfax, VA and was very impressed by his knowledge of both celiac disease and food sensitivities. I was instructed to consume way more gluten each day for 2 weeks up until my upper endoscopy appointment. If you follow me, you know I love soft pretzels. That’s basically what I’ve been eating several times a day, along with my regular gluten-free meals.

He also instructed me to eliminate all dairy products due to the slight possibility that it may be dairy and not gluten as the culprit for my body. Since I eliminated lactose a while back, it wasn’t that difficult for me to cut the rest out. Trying to read labels for dairy seems much easier.

For the past 14 days, my body feels like it’s in a sausage casing and any push on my skin is bloated and puffy. I can’t wear my wedding rings. My ankles have some mild edema going on and my face is abnormally bloated. My stomach just hurts and I’m not sleeping well. There is this overall sense of brain fog that I can’t seem to shake and I’m literally exhausted. Although part of the exhaustion is from my increase in workouts, but we can talk about that on a different post.

My arm has had a lovely rash on the inside of my right elbow and I’ve been experiencing an abnormal amount of heartburn. My joints feel extra achy and I’m getting really sore after my workouts.

Could this rash be from the gluten challenge?
Could this rash be from the gluten challenge?

Yesterday I had my endoscopy. It doesn’t really matter how many times I go for these procedures, I still get nervous about the anesthesia. My right arm has the perfect vein for IV’s and blood draws but the nurse insisted on using the top of my right hand. I know from experience that this is a bad spot for me. My tiny little veins are a challenge and I’ve struggled with that spot in times past. The nurses insisted and I let her try my hand. Well, I never had that much pain from an IV start in my life. Even my husband said my hand squeeze hurt him and he knew by the way my body was writhing around in the bed that it had to be painful. I know the nurse felt so bad but I warned her! The next stop was the spot I asked her to use in the beginning and it went in without a hitch. Moral of the story? Patients know what they are talking about!

IMG_1440-1024x1024
Bracelets for my Upper Endoscopy

After the procedure I don’t remember much but I do know I was tested for something called h. pylori due to some gastritis and Barrett’s esophagus along with the celiac biopsies. Call me weird but I’m fascinated by the pictures of my innards! The results will come in 3-4 weeks and I should finally have some confirmation one way or another.

So, what’s the point of me going through all of this? Why did I do the gluten challenge? Why didn’t I just accept the celiac diagnosis? These are all great questions.

I guess for me I feel like I’ve come this far to not have a conclusive answer. I share my experiences on here and believe I owe it to all my readers to know that even I continue to struggle years after my diagnosis. I run into challenges associated with diagnosis and am looking for answers to more questions about not feeling 100%.

Don’t be discouraged into thinking you are the only one fighting this battle or having difficulties finding answers… because you aren’t! We are all in the same boat and the only way to get through the rapids is to row together.

Effective today, I am 100% gluten-free and lactose free. I will be for the rest of my life. I did the gluten challenge so I could confidently say I tried everything in my power to get the correct results. The results may be inconclusive but I know for a fact that gluten makes me sick, especially after my gluten challenge. And to me… that’s all that matters.

Should you do a gluten challenge? This is a tough question and a decision you will need to make with your medical provider. I can’t make that decision for you, I can only share my story and let you know my experience with the challenge. I will take this time though to re-emphasize the importance of waiting to eliminate gluten from you diet until all of your testing is complete!

If you’ve done the challenge and are willing to share your story, please feel free to post it in the comments section. That’s what makes this community so great is the ability to share our individual stories and let others see they aren’t alone.

Until next time.

Comments

  1.  Sue Rice says:

    After 5 months of becoming more and more ill, weight loss of 30 pounds (1/5 of my body weight at the time) in 3 months, liver complications, gastritis, non-specific colitis, rectal ulcers (diagnosed via endoscopy and colonoscopy – but no test for celiac was done) and my family doctor closing practice, I was left alone and on the verge of being hospitalized. I went on a waiting list for a new family MD and took matters into my own hands using natural herbs and totally clearing everything out of my diet.
    Long story short, a year and a half later, I am back up 20 pounds, survived multiple “be prepared for cancer diagnosis”, multiple specialist (gastro last with the longest wait time) It’s gluten, I’ve tried reintroducing it and I get the week or so of symptoms. Intense gastro pain, system back up, tremors, migraines – you name it.
    My gastro was angry that no one sent me to him first (the small local hospital I was referred to was sure I had cancer as I lost so much weight so fast) as I now have been gluten free for a year and he can’t tell if I am 100% celiac unless I do the challenge.
    I work a job I love that requires my brain to be sharp, I like my weight where it is, even though in high school I wasn’t this tiny – it’s much better than before) If I did the two week challenge by gastro feels it would be a HUGE setback for me. Even just a cross contamination now takes me totally out of commission.
    As I have been strict in my regime and I am textbook symptom wise, he is given me an out from the test as I have promised to never eat gluten. Should another test be developed, he’s going to call me.
    I applaud you for your undergoing of the challenge and very much like you stating it was your choice. My choice is to not put my body through it and continue gluten free as although a slow process, I am feeling better everyday. You are so right – don’t stop eating gluten until you’ve had the test is the best advice.
    Good luck with your results. Will be sending you positive vibes.

     

    •  Rebecca Black says:

      Sue, thank you so much for sharing your story! I think people being able to see that it is a personal choice to be made without judgement. These issues are so personal and I am grateful for your story. Hopefully, by just sharing our stories we can help people make their own decisions (with the help of their doctors of course!)

       

      •  Sue Rice says:

        No judgement is so important! We all know what it’s like to be “that customer” in a restaurant, “that guest” etc. So very much love what you are doing by providing a forum of support, empowerment to make your own best choices and a community in which to share.
        Hope you have a speedy recovery from the gluten-ing

         

  2.  R. Roth says:

    apart from the 3 to 6 months or more needed to remove inflammation caused by your gluten challenge from all your body tissue and rebalance hormones and electrolyte ratios, sadly duodenal spot biopsies may still miss villi changes and therefore provide an inconclusive diagnosis. More importantly, any results so obtained will not be able to discern if you are non-celiac gluten sensitive or eliac nor show any concurrent issues to celiac disease (associated casein, legume, ovalbumin, salicylic acid intolerances, beta carotene/interleukin-15 switch, etc.).
    Our patients have had the most beneficial answers/results (and newest research recommends this route over previous gold-standard of biopsy) by getting genetic B1 subgenes of HLA-DQ2 and DQ8 tested (e.g. Enterolab.com “Panel B”). Latter also provides answers as to “what else” to avoid.

     

    •  Rebecca Black says:

      Thank you for your comment. I’ve already had the DLA-DQ2 and DQ8 tests done. I based my decision on information I obtained while attending the International Celiac Disease Symposium along with collaboration with my doctor. Again, this is the choice I made for my body and am willing to work take the chance. I understand others are not. But, with so many people offering differing opinions on how to diagnose etc. I feel it’s important to share my story and my choice. I didn’t write this post to argue with people but rather to let them know this is a difficult journey regardless of the route they choose to find answers.

 

 

My Search for Answers: An Update on my Health

My Search for Answers: An Update on my Health

It’s been a while since I wrote a post about my health status and primarily it’s been because I feel in limbo. You might remember that I attended the International Celiac Disease Symposium in September hosted by the University of Chicago Celiac Disease Center. During some of the sessions, I realized my diagnosis of celiac disease wasn’t as conclusive as the doctors were suggesting nor did I have the correct tests done when I was diagnosed in January 2012. I left there on a mission. What is really going on with me?

I sought a second opinion from a gastrointestinal doctor recommended by other celiac disease folks in Columbus, Ohio. I knew time was of the essence because we were scheduled to move out-of-state mid-October. Dr. Salt reviewed all of my previous tests and said he wasn’t sure I had celiac disease. My tests were out dated and inconclusive. He believed I may have Chron’s disease. He also felt my thyroid and felt lots of nodules and said I needed to follow-up with an endocrinologist once I got to Virginia.

My upper and lower scopes were scheduled and the doctor performing the tests had some choice words for the doctor that previously diagnosed me. It wasn’t encouraging. On a wonderful and positive note, my intestines looked great! But, I’ve been strict about living gluten-free for 2 years now, so likely any damage would have healed during this time. It made me feel better though knowing my innards are looking healthy.

Dr. Salt ordered a small intestinal bacterial overgrowth hydrogen test, which was a piece of cake. The most difficult thing about the test is fasting and the cost. Insurance didn’t cover it. His office called me 2 days before we moved out-of-state to say I did test positive for SIBO. I needed to follow-up with a gastrointestinal doctor in Virginia. I took it upon myself to go on a gluten challenge. There was no way to get an accurate diagnosis and testing if I was gluten-free. Which leaves me to a reminder to all of you reading this, please don’t stop eating gluten until you’ve had all of your testing completed! I’ve been eating gluten once a day for the last 8 weeks to confirm my celiac diagnosis. Doubling down on probiotics has helped with the stomach aches but I can tell you my joints hate me, my pants don’t fit anymore, my migraines are occurring more frequently, my joints are tingly and almost feel numb, I’m sleeping all the time and I’m feeling more sad/moody/anxious than usual (some would call this “brain fog”). I wouldn’t recommend doing this on your own but I’m stubborn and on a laser focused mission to find answers. I do know at least that gluten affects me regardless if I am confirmed with celiac disease or they tell me I have non-celiac gluten sensitivity. I don’t care, I know how I feel now with and without it. Without gluten is the answer.

Once we moved to Virginia, we transitioned to new health insurance which took about 2 weeks to finally get that situated and then I’ve been trying to get doctor’s appointments here. I did get my thyroid ultra sound which is positive for Hashimoto’s but they also found a small lump/cyst which I will now need to follow-up with a surgeon for a biopsy.

I’ve been to a OBGYN here to get established as a patient to help me with my endometriosis. I’ve been to a general practitioner to help me get whatever is going on with my body figured out and to follow me through all my treatments. I’ve been to an endocrinologist who I was very unhappy with when he told me to investigate bariatric methods for weight loss and suggested I go on a 500-600 calorie diet all while explaining he has at least 3 patients a day with the exact same symptoms as I do but he has no answers!! What the hell? Very encouraging. (sarcasm noted)

My new primary care physician was great. I went in there will all my medical records, test results and my own written bullet point summary of my health situation. She confirmed that I do have both of the celiac genes, we discussed me feeling better on a gluten-free diet and now that I’ve been eating gluten she ordered the correct and most updated celiac blood tests. She also ordered tests for arthritis, thyroid problems and some deficiencies.

During the celiac disease symposium, I learned the following things about properly diagnosis celiac disease:

The 4 out of 5 Signs Rule for having celiac disease – you should have 4 of 5 of these done in order to diagnosed celiac disease:

1. Presence of signs and/or symptoms compatible with celiac disease
2. Positive serology testing (TTG +/- EMA)
3. Compatible HLA genes (DQ2 e/0 DQ8 positive)
4. Positive internal biopsy with enteropathy (damage) typical of celiac disease
5. Resolution of symptoms with a strict compliance with a gluten-free diet

Well, now I know I have #1, #3 and #5 but #4 was normal and #2 came back normal after eating gluten again. She also did extensive testing for the thyroid problems (only after I did all my research online to make sure I got the exact tests needed for proper diagnosis). Those results haven’t come back yet.

So what does this mean?

  • I still need to follow-up with a gastrointestinal doctor here in Virginia and have another colonoscopy to see if I have any damage to my intestines.
  • I need to follow-up with a new endocrinologist about my thyroid and the biopsy.
  • I might have non-celiac gluten sensitivity and that’s okay. After this trial period I know living gluten-free for the rest of my life is the only option for my health.
  • I’m dedicated to living a gluten-free lifestyle and supporting and advocating for all of us (regardless of your reason for living a gluten-free life!)
  • I’m going to continue to search for medical answers and share my story with all of you to help you too!
  • I’ve learned that nothing is ever cut and dry with auto-immune diseases.
  • And finally, but maybe most important, I feel completely betrayed by my other doctor. I trusted him. I thought he knew what he was doing and finally found my answers. I am angry all over again.

The National Foundation for Celiac Awareness has an entire section on their website covering non-celiac gluten sensitivity. In reading it for research on this blog post, I know notice that I have every single one of those symptoms for NCGS. Look at what they say directly from their website:

What are the symptoms of non-celiac gluten sensitivity?

Non-celiac gluten sensitivity shares many symptoms with celiac disease. However, according to a collaborative report published by Sapone et al. (2012),  individuals with non-celiac gluten sensitivity have a prevalence of extraintestinal or non-GI symptoms, such as headache, “foggy mind,” joint pain, and numbness in the legs, arms or fingers. Symptoms typically appear hours or days after gluten has been ingested, a response typical for innate immune conditions like non-celiac gluten sensitivity.

If the symptoms are so similar, how is it different from celiac disease?

Non-celiac gluten sensitivity has been clinically recognized as less severe than celiac disease. It is not accompanied by “the enteropathy, elevations in tissue-transglutaminase, endomysium or deamidated gliadin antibodies, and increased mucosal permeability that are characteristic of celiac disease” (Ludvigsson et al, 2012). In other words, individuals with non-celiac gluten sensitivity would not test positive for celiac disease based on blood testing, nor do they have the same type of intestinal damage found in individuals with celiac disease. Some individuals may experience minimal intestinal damage, and this goes away with a gluten-free diet.

Research has also shown that non-celiac gluten sensitivity does not result in the increased intestinal permeability that is characteristic of celiac disease. Increased intestinal permeability permits toxins, bacteria and undigested food proteins to seep through the GI barrier and into the bloodstream, and research suggests that it is an early biological change that comes before  the onset of several autoimmune diseases.

What I really want you to take away from this blog post and the reason I share the detailed account of my journey with this is you know are armed with extra information on your mission for answers. Hopefully, some of you reading my blog will realize you have similar symptoms as me or you have more information than before to get accurate testing and become and advocate for your own health. No one knows your body like you and it’s essential to put that information together with the medical world in order to get correct diagnoses!

Of course, I will keep posting about my journey and I would love to hear any of your stories. Any of you going through the same thing? Have you been through the same thing? 

Many of my readers not only learn from me but from your comments as well, please feel free to share your information in the comments section below. 

Your TMI celiac and gluten-free advocate

Comments

  1.  Amanda Yoder says:

    Wow you amaze me (and inspire me somewhat) to spend the time and money to keep trying to figure this out! I know I’ve been helped by going strict gluten free and have a reaction to even the tiniest bit, but no Dr. has helped me–the primary care just said well if you feel better, keep doing that and a gastro I went to see just wanted to do the scope, which I’m uncomfortable with as a first step–I like to leave my insides alone from machinery if possible. I worry about down the road because I don’t have the documented illness and I had already unknowingly done the elimination diet before going to the Dr. the first and when I tried to re-start gluten (just one slice of pizza), I had constant stomach pain to the nth degree and constant diarrhea!

     

    •  Rebecca Black says:

      HI Amanda! Thanks for your comment. I guess I promised myself that I would chronicle my entire journey and it’s my mission now to makes sure my own health is under control. I am fortunate we have health insurance and can afford the medical procedures. If anything, my experiences can help all of you in finding your own answers in this crazy journey! Thanks for your comment
      Rebecca

       

  2.  Susan says:

    Wow you are beautiful and glowing!! You can see when someone has been living gluten free, they are so much more attractive. I’m finally going for all my tests and colonoscopy next week Friday whoop whoop!!

    My gastrointestinal doc said that if you need to be on the gluten challenge for at least 3 months if you have been off so long, or else you will get a sure fire false negative.

    With regards to your thyroid, I hope you are avoiding all forms of soy! (Please investigate further on the link of soy and thyroid issues.) Going off gluten, I upped my intake of soy which had disastrous effects on my thyroid.

    Good luck beautiful lady, I love your posts! xxx

     

    •  Rebecca Black says:

      Susan – Soy is definitely on it’s way out of my diet. I never really paid attention to it because dairy made me so sick. Especially when I bought fancy coffee drinks, they only offer soy or regular milk/cream. Hopefully, my new gastro doctor here in Virginia will really be able to put me on the right track.

       

  3.  Allison Love says:

    I got diagnosed two years ago with Celiac. I only had lab work done because I have a congenital heart defect and putting me under sedation is more dangerous to me.The gastroenterologist I saw at my local hospital wanted to do a scope even though he knew that I had a congenital heart defect. I had a lot of questions for him which he didn’t answer. I am now switching my care to a new gastroenterologist at the hospital that I go to for my cardiac care. I am nervous but excited to see what the new gastroenterology team has to say. I am looking forward to getting the answers to my questions especially because I am getting ready to leave my community college for my local university if I get in. Anytime I get a little bit of gluten by accident my gi symptoms come back worse each time. I am down for at least a week or two. I know that I am lucky to have my state medicaid which will cover appointments and tests with specialists.

     

    •  Rebecca Black says:

      Allison- Bravo to you for taking control of your own health and getting a second opinion. I commend you for that because I know it can be tough. Thanks for sharing and good luck on your journey! Rebecca

       

  4.  Candice says:

    I’m sorry to hear you are going through all of this. I know how frustrating it is to think that you have all your health problems figured out, only to feel that there is still something not right. I was diagnosed with NCGS after a rule out of celiac. I felt 90% better after going GF, but three years after I was diagnosed I started having symptoms again. This past April I found out I have other food allergies and after removing those foods from my diet, I’m finally feeling better. As the wise Ben Franklin said, “energy and persistence conquers all.”If there is one thing I have learned from my experience, it’s that I am my own body’s expert, and will keep advocating for myself, and my health. Good luck in your continued search.
    Candice recently posted…AllerEnergy: Soft Pretzels!My Profile

     

    •  Rebecca Black says:

      Candice- Thanks for sharing and now I know that this is a pretty common phenomena. It’s very frustrating when you think you found the answer only to find yourself looking at Pinterest in a doctor’s office again. I’m finally started to get some better answers and working on adjusting my diet as well to maximize healing for my body. Love the Ben Franklin quote – that’s my mindset right now!
      Rebecca

       

  5.  lfinks123 says:

    Hi PLC
    I have been following your blog since last year when my 12 year old daughter started having skin issues, and GI issues. She was scoped, blood work etc. All neg for celiacs. They told us she has IBS. When we removed gluten from her diet she stablized and has been gluten free for a year now, yet still has ongoing boils. She has been diagnosed w/ a skin disease, she gets boils. It is classified as an autoimmune disease. You have many autoimmune diseases too. I believe all celiacs, as well as all autoimmune issues stem from “leaky gut”, which your Doctor will not acknowledge. I had a stool test done on my daughter by Enterolabs, which analyzes what foods you are reactive too. She is reactive to gluten, egg, soy and dairy. We are working with a naturopath to try to heal her gut. This is all new to me, I am not a new age hippie type person, but have learned so much about medicine, etc. Per what i have read, immunecells in our gut have become sensitive to proteins from certain foods or bacteria. These immune cells launch an attack (autoimmune response) whenever these proteins (our triggers) are present. Hashimotos or Graves disaces is when autoimmunity attacks the Thryoid gland. We all have to be our own advocates out there (in this case I am my duaghter’s!). good luck in your search, i hope you consider researching my theory!

     

    •  Rebecca Black says:

      Thanks for sharing your experience with me and my readers! It’s times like these that eventually help others the most. The more we can talk about the issues like this in our lives, in a community that understands, the easier it is to be an advocate for your own health. You are correct about auto-immune diseases. They love to hang out with each other in our bodies. I’ve always found that fascinating. I’m glad you finally found answers and are on the road to recovery with your daughter.
      Rebecca

       

  6.  connie curtis says:

    There are other testing options that can tell you about celiac and food allergies so that you dont have to eat gluten. Its through DNA. A good site for information in general. I recommend Gluten Free Society. If I hadnt found this site and doctor. I would be getting sicker so I offer this as support to you so that you will get better and get the correct diagnosis. Good luck.

     

    •  Lou says:

      I stopped reading your blog as I knew you were on the wrong path and leading people to hell that need help.

      BUT: I am proud of you now and hope you have reached all the people you miss lead on your blog. I can tell you I did read it but stopped when I could tell you were not leading people down the correct path.

      My story is almost like yours but I had gut problems that had to be address before I got to the point that I could say. I have my health back with damage, because I couldn’t find help. I had a blood count of 7, I hadn’t eaten wheat and dairy for a year my DR said I had to eat gluten and thru it up in the hospital…She then said you have Celiac Disease, but the 27 biopsy’s showed nothing. BUT did make me want to look it up on the internet to get help that lead me to the correct testing to prove my feelings. Glad that you found the correct path for your health and now can help people.

      I am so glad that you got help and now will help everyone that need it when they find your website. I will not delete your emails. Thank you for tell us. (I don’t know why I even opened this email, but do now)

       

      •  Rebecca Black says:

        Thanks for giving me another try Lou. Happy Holidays!

         

    •  Rebecca Black says:

      Thanks for the comment Connie! I’m glad you are feeling better and I appreciate your comment  Rebecca

       

  7.  Sharon says:

    Your story sounds so familiar to mine. I am now trying to find some new Dr.’s since as of the new year I am no longer HMO. I think I needed to get all these tests done too. I asked my last Dr. and she said no, just continue eating GF. You have an intolerance. They never tested me for Celiac’s until I was GF for 3 years. They then wanted me to go back to eating Gluten for 3 months. I just did this, but gained 30 pounds. I feel like a fat, gross cow. They then tell me that I needed to lose weight cause now I am overweight. Thanks so much for this blog. I know that I am not alone.

     

    •  Rebecca Black says:

      Thank you Sharon for leaving a comment. I appreciate it! You are not alone and we can get though this with the support of each other and sharing our experiences with others. That’s why I started PLC.  Rebecca

       

  8.  Alexa says:

    Hi Rebecca,

    First off I would like to say that I have Crohn’s Disease, which is why I follow you! I eat a diet free of gluten, most dairy, corn, soy, peanut, tomato, flax, lentils, peas, pineapple, grapefruit and more because those things irritate me. I am 19 and have had it since I was 12. If you need anything, feel free to email or Facebook me. You’re posts have helped me through some tough times and gave me hope about feeling good and having lots of food options. Keep doing what you’re doing, you are close to answers!

    XO,

    Alexa

     

    •  Rebecca Black says:

      HI Alexa! Thank you for your message. I love that I’m able to help you even though we have different health problems. I must say being ages 12-19 and going through this, you will be able to conquer the world! Rebecca

       

  9.  Shannon Martin says:

    Hello,
    Your story sound so familiar too me. I was diagnosed with Endometriosis two years ago. One year ago I had surgery to remove as much of the Endometriosis as possible. During the surgery the doctor found out I did not have it at all but had an abundance of Scare Tissue growth throughout my abdomen, from a previous surgery. The mis-diagnosis of the Endometriosis is very common for Abdominal Scar Tissue overgrowth. I never truly felt any better after the surgery a year ago and came down with some sever symptoms that were extremely difficult to diagnosis. Every test I took came out beautiful. All I wanted to hear from the doctors was that they had a bad test result and that they knew what was wrong with me. My doctor suggest that I try to go Gluten, Corn and Soy free about 5 months ago. Slowly most of the problems slowed down but still have not gone completely away, I have found Soy to be just as bad as Gluten for me. Then 2 months ago I was diagnosed with SIBO. I have found that going off of all flower (of any kind), yeast and especially sugar products makes a massive difference. Even Gluten-Free cupcakes and cookie make the SIBO worse. I have recently gone on a Candida diet plan with minimizes yeast, gluten and sugars into your system and have found it to be the best thing I could do for myself.

     

    •  Rebecca Black says:

      Thank you Shannon for sharing your story. I realize this is such an ongoing journey but it is completely frustrating at times. I’m working on changing my diet all over again and re-evaluating what foods my body responds to! Again, Thanks for the comment. Rebecca

       

  10.  Ronnie says:

    I’m glad I read this. At first I wasn’t because I felt like this story would hit closer to home for me. Well sounds alot like it would. Thanks so much for this post. I look forward to hearing more about your diagnosis.

    Ronnie

     

  11.  lori says:

    Hi Rebecca, i too have done loads of research on all of this. This is the first time i hear about the part about non celiacs wont test positive on blood tests. Could you verify what you mean by this. Do you mean the genetic testing or the TTG test. Knowing this part helps me answer alot of questions. Thank you for all your hard work. I am a huge advocate for celiac and getting the proper diagnosis before going gluten free. Once you make the switch it is very difficult to get all the aswers. I am always advising for people to do all the testing before going gluten free.

     

  12.  Heather says:

    I have 5 out of 5 of the indicators listed above.  My biopsy results were negative but gastro says the visual scan done when they were taking tissue samples of my badly damaged intestines was enough to make the diagnosis. I had also been told by a rheumatologist (who was the one who finally did the blood work for Celiac and made the initial diagnosis) to go ahead and start the gluten free diet immediately. So I had been GF for 2 weeks when I had the endoscopy.
    It’s been 5 years since going GF and I feel much better, but am not symptom free because of other health issues.
    In the 5 year journey, I have been diagnosed with interstitial cystitis (a bladder condition thought to be autoimmune), hiatal hernia, GERD, colitis, and endometriosis. Prior to being extremely ill 6 years ago, I was pretty normal. I was a little overweight, tired a lot, migraines, seemed to get a few viruses (cold, flu, sinus infections) a year. Then my immune system just crashed under severe stress. Good news is, I rarely get sick anymore and I am at a healthy weight. I just have a lot of bowel/bladder issues. A follow up endoscopy last year revealed that my intestines were completely healed, but also that I had the hiatal hernia and GERD. Then a colonoscopy revealed the colitis. I have good days, I have bad days, but I am convinced that gluten is evil.  When my middle daughter started getting migraines at 9 years old, was tired all the time and got severe stomach pain, we had her tested. She didn’t need the gene test because obviously she would have had it (because of me), but the endoscopy and blood work were positive. The specialist she saw said it was the highest indicators she had ever seen. She hasn’t had a migraine or stomach ache since going gluten free. She enjoys soccer and softball and is exceling in school! OMG, I went on and on!  Good luck to all of you trying to find the answers, but in my opinion going gluten free can only help regardless of who you are!

     

  13.  kunzfamily says:

    Hi, I have celiac. I deal with joint aches, headaches, other daily side effects. In September, I started reading Kimberly Snyder’s Beauty Detox book. I lost weight & never felt better. I had a lot of energy. The only negative( for me) was the Food item she suggests to eat in moderation is corn. Corn is a big no-no for me. It’s on the highest side effecting the list of food intolerances. Other than that, I loved her advice. Her recipes. Her science to back up her reasoning, helps wrap your mind around why, what you’ve done in the past doesn’t work. After a week of following her plan, every terrible side effect deminished. I loved how I felt.
    Then at thanksgiving until now, I started eating all the staples (GF of course) and stopped following her advice on when to eat (which is not painful like the detox diets I’ve tried in the past. ) . I’ve had very low energy, body aches and pains, drinking more coffee and alcohol, feeling super dehydrated even though I’m drinking water. now coming down with a bad cold and over all feeling slumpy. When i was taking her advice and sticking to her plan, I felt I was able to fight off colds, and I did.
    After reading many diet books, trying weight loss supplements from Powder City, teas, seeing a nutritionist, chiropractor for weight loss, Kimberly’s book is the best fit for me. It’s about life changes & I want to feel great again, so I’m re-reading her book.  if you don’t want to buy her book, her website & almost daily emails gives great tips. Google her.
    kunzfamily recently posted…Here comes the Funky smile…My Profile

     

    •  Rebecca Black says:

      Thank you for the recommendation!

       

  14.  vickie says:

    Would you recommend Dr. Salt. I live an hour and a half from Columbus. I really need a Dr. that understands Celiac.

     

    •  Rebecca Black says:

      I loved Dr. Salt! Yes, I would recommend him.

       

      •  Vickie says:

        Thank thank you thank you. Dr. Salt was wonderful. Many miles to go in this journey but he was/ is so good at listening to what I described as pain and needs. He was the first ever to hear what I said…….I am starting to be hopeful.

8 Gluten Free & Celiac Disease Myths Debunked

myths-debunked

Last month, I attended the International Celiac Disease Symposium and am just now getting around to blogging about my journey for the last few weeks. After leaving ICDS, I flew straight to Baltimore and attended Natural Products Expo East. As soon as I got home, I packed our entire house and prepared my staff and business for my relocation to Northern Virginia!

We moved into our new apartment this weekend, my husband started his new job yesterday and I finally feel like I’m getting settled. The home-sickness is wearing off and I’m exploring the area more and more each day. But, in the meantime I owe you all about 10 blog posts!

Let’s get cranking with debunking gluten myths!

The ICDS 2013 was filled with speakers from all over the world who are medical professionals and experts on celiac disease. They discussed the current research and gave us the down low on all things gluten-free and celiac disease. One of the most exciting segments of the conference was “debunking the myths.” Finally, some answers to age-old questions that I am asked frequently with answers straight from the doctor’s mouth!

  1. Can you drink coffee on a gluten-free diet? Is there a protein in coffee that can cross react with gluten?
    1. Answer: Yes! You can enjoy your coffee. In fact, the coffee flowed everywhere during this conference. Could you have another, separate problem with coffee or caffeine? Yes! But, it is not linked with gluten or celiac as a cross reactive food.
  1. Can you diagnose celiac disease with just a blood test?
    1. Answer: No. Absolutely Not. Diagnosis requires much more than a blood test. See my earlier blog post on the 4 of 5 tests needing completed to confirm a diagnosis. If someone diagnoses you based on a blood test, find a new doctor.
  1. Corn? Can you eat corn while living a gluten-free diet? Is corn protein harmful for individuals with celiac or non celiac gluten sensitivity?
    1. Answer: Enjoy your corn. Dr. Fasano said, “There is absolutely no proof, no evidence that corn is harmful.” Again, could you have separate issues with corn? Yes.
  1. How common is non celiac gluten sensitivity?
    1. Answer: The doctors have no clue. Very new diagnosis and still in the learning phase.
  1. Has there been a gene linked to non celiac gluten sensitivity?
    1. Answer: No. Only for celiac disease.
  1. Are pills like Gluten Ease or other gluten enzyme pills found at health stores and pharmacies okay to take?
    1. Answer: Absolutely not. Never. There is never ever ever a reason to take these enzymes. They are totally unjustified by the lack of evidence. Nothing on the market helps digest gluten. There are products in the works.
  1. Is gluten making you fat?
    1. Answer: No. As a matter of fact, people it’s been found that the more wheat you eat, the less fat you are. (for those of us living with the ability to digest gluten)
  1. Is a gluten-free diet making me fat?
    1. Answer: Depends on what you are eating and how much. 40% of people are overweight at the time of their celiac diagnosis. Patients tend to gain weight after celiac diagnosis based on better absorption of food. Essential to work with a healthcare team, which includes a dietician to create a health and wellness plan for after diagnosis. Stick with whole foods.

All of this information was presented by medical doctors. I am just passing along the information that was giving at the International Celiac Disease Symposium! I hope this is helpful to you and your journey with gluten-free living and celiac disease.

International Celiac Disease Symposium 2013: Recap Day 1

International Celiac Disease Symposium September 23-25, 2013
International Celiac Disease Symposium September 23-25, 2013

Wow. Just wow. That is all I can say right now after my first day at the ICDS 2013.

I am forever grateful and thrilled I was able to attend this monumental event in Chicago. The information I learned already is so incredibly valuable and helps wade through much of the misinformation you find on the internet or hear through the grapevine.

The biggest thing I’ve learned so far is not to trust information found on the internet, even studies! They are filled with inaccuracies, small sample sizes or inconclusive information that can spread like wildfire. There are world-renowned celiac experts at this conference, sharing their findings, beliefs and information about celiac disease.

If you aren’t sure what the heck I’m talking about yet, the International Celiac Disease Symposium is a 3 day event held every 2 years in cities all over the world. Here is what the conference is all about directly from the ICDS2013 website,

“While the 15th ICDS meeting will continue to build upon the successes of 40 years of past ICDS scientific programs, the Chicago meeting is designed to address the interests of all of those affected by celiac disease and gluten-related disorders – from physicians and researchers to patients and clinicians to family and friends. The ICDS Chicago will present two distinct interactive educational tracks. The meeting will bring together the world’s top scientists and physicians to discuss the most recent scientific advances in managing and treating celiac disease and gluten-related disorders while a separate clinical forum will be held to further educate dietitians, clinicians, and patients.“

It’s impossible for me to share all the information I learned today into one blog post so I am going provide some information based on the major points of the discussions. If you head over to Twitter and do a #ICDS2013 search, there are hundreds, if not thousands, of tweets from the event that will blow your mind!

Here are some great things I learned today:

  1. We are not born with celiac disease. Genes, yes but the actual disease can develop at any age or stage of life.
  2. Women are diagnosed 2-3 times more frequently than men.
  3. When a biopsy is done, advocate and ask for 4-6 biopsy samples to be taken during the procedure. 2 is simply not enough.
  4. There is a major lack of follow-up with doctors and celiac patients – patients must advocate for their health and not only see their doctor for follow-up appointments, but work with a registered dietitian to ensure proper nutrition is being received by the celiac patient. There are inadequate follow-up visits, no assessment of compliance with diet, no follow-up biopsies are being done and inadequate f/u serology testing.
  5. Gluten alters bowel function in patients with irritable bowel syndrome if they are positive for the HLA-DQ2 or HLA-DQ8 gene but do not have celiac disease.
  6. Just because you have the HLA-DQ2 or HLA-DQ8 genes, it does not mean you have celiac disease.
  7. Celiac disease is seriously under diagnosed in men.
  8. There is not enough information to diagnose non celiac gluten sensitivity and no reliable information is available to determine how many people may be affected by this because screening is unknown as well.
  9. Small Intestinal Bacterial Overgrowth may be a problem in people who have similar symptoms as IBS or Celiac but aren’t diagnosed. There isn’t a lot of research on this but a hydrogen test is available. (Actually, this test is something I have at my house to take next week when I get back from the conference)
  10. A gluten-free diet should never be started prior to ruling out or being diagnosed with celiac disease.
  11. Doctors are still recommending a gluten challenge for people who have been gluten-free on their own merit or for other reasons and then need to be tested for celiac disease.
  12. If you have a first degree relative diagnosed with celiac disease, you should be tested.
  13. Support groups for children and adolescents are the best way to help them cope with their diagnosis. If you can’t find one, create one yourself. Sometimes we need to take these matters into our own hands in order to help the kids.
  14. Osteoporosis normalizes within 3 years of following a gluten-free diet of people with celiac disease.
  15. Failure to adhere to a gluten-free diet will cause continued bone density loss and contribute to osteoporosis.

The 4 out of 5 Signs Rule for having celiac disease – you should have 4 of 5 of these done in order to diagnosed celiac disease:

  1. Presence of signs and/or symptoms compatible with celiac disease
  2. Positive serology testing (TTG +/- EMA)
  3. Compatible HLA genes (DQ2 e/0 DQ8 positive)
  4. Positive internal biopsy with enteropathy (damage) typical of celiac disease
  5. Resolution of symptoms with a strict compliance with a gluten free diet

In total, my mind was filled with information and excitement to not only learn about celiac disease, but also to have safe foods to snack on and enjoy for 3 full days. Stay tuned for more information from tomorrow and Wednesday!

 

25 Things I’ve Learned from Celiac Disease

25thingsaboutceliac

It’s been an incredible life long journey for me (and many of you) until I finally got the answers I needed for all my medical problems. It seems as if it were yesterday that I was sitting in a doctor’s office, waiting to be seen, only to leave disappointed and without any hope or answers for what was wrong.

Another doctor, another prescription and still no relief…

But the last few weeks, I’ve had some time to reflect and really think about what having celiac disease means to me and some of the major things I’ve learned over the last 18 months through my own personal experiences and the last 10 months as a blogger. If you have things you learned about gluten-free living or celiac disease, please feel free to post them in the comments so other readers know they aren’t alone!

  1. My celiac disease is not your celiac disease. I can’t emphasize this one enough! We all have different triggers and ailments so it’s incredibly important to pay attention to your own body versus what you hear from me or others on forums and websites.
  2. Celiac comes with other problems. Endometriosis, thyroid problems, arthritis and vitamin deficiencies for me!
  3. Vitamin & Nutrient levels should be tested on a regular basis to ensure you are supplementing properly to nourish your body with what’s missing.
  4. Gluten will make you feel crazy, act crazy, think you’re crazy and make you paranoid. It consumes you life and there are times when I just have to stop and think… at least it’s managed with food.
  5. It seems to be the only disease people don’t know enough about to tell me how to live my life. Now, gluten-free is another story but celiac disease usually doesn’t get too many unsolicited comments or advice from others.
  6. You have to be incredibly educated about celiac disease, living gluten-free and your body to be safe as much as possible.
  7. It’s essential to learn how to plan accordingly when traveling, dining out or anything out of the norm to prevent you from being stuck.
  8. A gluten-free emergency supply kit is a necessity not an idea.
  9. Poop can tell you so much about your eating habits and health of your body!
  10. I still learn about gluten in things and are surprised by it – tea bags are my most recent discovery!
  11. The gluten-free and celiac community is amazing and I am honored to be a part of it!
  12. I’ve come to realize that packaged gluten-free food is my worst enemy. For my health & my waist line – real foods is where it’s at!
  13. Celiac gave me the opportunity to see who my real friends are and learn the ones who care enough about me to always make me feel safe.
  14. Celiac and fitness is an interesting concept. I’m excited to come out with my program late summer!
  15. I’ve learned to accept the days when my body won’t cooperate and stopped beating myself up about feeling tired, having a headache or achy joints.
  16. Being curvy and healthy is more important than being lean and unhappy.
  17. Living gluten-free doesn’t have to be more expensive – you just have to plan better and eat clean to keep the budget tight.
  18. I’ve learned to look at life as a new adventure, instead of letting it stress me out every day.
  19. My family shouldn’t be burdened by my celiac disease, so I try to bring my own foods to events just to make sure I’m safe and not starving.
  20. Airports are the worst for living gluten-free and with celiac.
  21. Writing and blogging helps keep me sane and warms my heart when I’m able to help you too.
  22. There are no true gluten-free substitutions. Gluten free bread is not soft sourdough bread and it never will be. Gluten-free Oreos are not the ones I’ve learned to love over my lifetime an none can duplicate it either. I’m done trying to find substitutes and instead I’m learning to love new things instead.
  23. I’m proud to take charge of my health and not take no for an answer. I refused to accept that I didn’t have anything wrong with me and I was correct.
  24. I love my husband more now than ever. He has been the most amazing and supportive person through this and I certainly hit the husband lotto.
  25. I love my body more now than ever. All of it. All the problems. All the wonderful things people take for granted, I’ve learned to love and enjoy.

Comments

  1.  Sheryl Rex says:

    I have learned that ‘Gluten Guard’ meds, do NOT work on everything. It is easier just to go without.

     

    •  Rebecca says:

      What are “gluten guards?”

       

  2.  Atherton Baking Co. says:

    I’ve learned the GF is very supportive and generous. During a very low period I found Karen Morgan & Tim Lawson, they taught me how to be strong! The GF fam shares and supports all over the world! When you reach out, someone is always there!

     

    •  Rebecca says:

      I second that with the community! It is so true!!

       

  3.  Charlotte says:

    I’ve learned to be a better and more adventurous cook. I’ve learned that there is MORE to eat as a celiac than I ever ate pre-diagnosis and I was a pretty adventurous eater already even with a ton of allergies. I’ve learned to be my own advocate. I’ve learned that I have some AMAZING friends who support me and my GF life.

     

    •  Rebecca says:

      Those are awesome things! Thank you so much for sharing :)

       

  4.  Mindy says:

    I love the 25 things you have learned! Very inspirational for me! I still struggle with many things related to living with Celiac after almost 5 years of living gluten free.

    I also need to learn how to attend events without feeling so awkward when taking my own food. Right now one of my challenges is attending the service’s at church that offer crackers for the Lord’s supper practice. The preacher told me to just bring my own cracker’s. Still I dealt with a lot of guilt for awhile by not participating in the practice at church.

    I do still have days that I do not feel well mainly due to environmental allergies and other food allergies like dairy, soy, yeast and garlic which makes my eliminating other foods important.

    Am still trying to figure out how to get high protein (which of course helps the energy level) Not easy when I am not a huge meat person.

    Thanks for these wonderful comments!

     

    •  Chessie says:

      Mindy, I was diagnosed with celiac disease about a month ago (quite a shock) and I’m slowly climbing out of the deep hole of fatigue I was in. I hear you about protein, because I’ve been vegan for about a dozen years and most of the vegan “fake meats” out there are made with lots of wheat gluten. So, it’s beans, tofu, tempeh, nuts, and seeds for me. I think I can get enough protein, but it will take daily thought. It’s too bad you don’t do soy, but there are lots of other beans and legumes out there.

      Oh, how I loved stuff made with “vital wheat gluten” (i.e., deadly wheat gluten). But yeah, turns out there’s a reason why it didn’t agree with me so much.

      Rebecca, thanks for the 25 tips!

       

      •  Rebecca says:

        Chessie-

        Thanks for listing some other sources of protein! I think people automatically assume that you can only get it from meats.

         

    •  Rebecca says:

      Mindy if you eat eggs – Pasturized egg whites are a perfect way to get protein into your diet. They don’t taste like anything and are protein packed. I put them in my juice and shakes. You can buy them in larger packages which are much more affordable through places like Egg Whites International. They come frozen and then you just keep them in the fridge and use them as you wish.

       

  5.  Brittany says:

    Do you have a post somewhere explaining:

    “A gluten-free emergency supply kit is a necessity not an idea.”

    What is that?!

     

    •  Rebecca says:

      An emergency kit is something that you would want to have in case there is a disaster like a hurricane, power outage, tornado or fire. It should filled with gluten-free foods that you can consume in case you don’t have access to anything for a few days.

       

  6.  Angela says:

    Wow I had never thought about tea bags. Thanks for the tips!

     

    •  Rebecca says:

      You’re welcome!

       

  7.  Martin says:

    re12: Great to see more celiacs avoid processed food and look into the real food/paleo diet

     

  8.  Amanda Yoder says:

    Love this! So true and so relatable!

     

  9.  Kay Gaumer says:

    I’ve been gluten free since February of this year. It has be a challenge to adjust my diet. I am also allergic to dairy and most grains. I think your comment about making mew ‘friends’ and not trying to substitute gluten free products for old ‘friends’ is an excellent idea. I lean toward a vegetarian diet and buy organic and GMO free products. I also try to buy local as the products are fresher and tastier that way.

     

  10.  Sherry says:

    I am glad I found this blog. I can relate so much to what you said!

Gluten in Medicine Disclosure Act – Interview Congressman Tim Ryan

gluteninmedicine
Gluten in Medicine Disclosure Act

I had the pleasure of interviewing U.S. Representative from the 13th District of Ohio, Tim Ryan,

about the Gluten in Medicine Disclosure Act.

Rep. Tim Ryan (D)
Rep. Tim Ryan (D)

I am from North East Ohio and am proud to say this is Congressman Ryan’s district! Unfortunately, he was called to vote and I only had a brief 10 minutes to talk to him about the Act. But, you can listen to our conversation right here…

According to Congressman Ryan’s website,

The Gluten in Medicine Disclosure Act has been endorsed by: American Celiac Disease Alliance, National Foundation for Celiac Awareness, Celiac Disease Foundation, Celiac Sprue Association, Gluten Intolerance Group, North American Society for Pediatric Gastroenterology, Hepatology and Nutrition, and the American College of Gastroenterology.

So,  what can you do to help?

You can call or write to your local representative and tell them you support this Act! Most of our congressmen have email addresses that you can contact them. This bill was reintroduced this year, after failing last year despite thousands of letters of support to congress. Our letters got this Act reintroduced and it’s up to you to keep the momentum by reaching out and contacting your congressmen!

Click Here to find out who your congressman or woman is to contact regarding the Gluten in Medicine Disclosure Act!

Click Here if you need help with how to write a letter to congress!

Click Here if you want to contact Congressman Tim Ryan!

If you would like a good guide about the medications, http://www.glutenfreedrugs.com/ is a great resource and website for information on gluten in medications.

Do you have a story about gluten in medications?

Do you have tips for other people that struggle with gluten in medicine at the pharmacy or getting answers?

I wanna her about it – post in the comment section below :)

 

 

Ask Rebecca: Do I Need to get Tested for Celiac Disease?

This is a tough one for me. I believe everyone has the right to follow their own route for treatment. There are some people who can eliminate gluten, feel amazing and live on their lives as normal but I don’t think that’s the norm for this disease.

I believe if you can afford the testing or have health insurance, it is essential to get tested for a number of reasons. Hear me out..

1. You may or may not have celiac disease but I can almost guarantee you have some sort of nutrition deficiencies that can only be determined by blood work. This isn’t as simple as just taking a multi vitamin. The only way to adequately determine what vitamins you need is to get the proper blood work done to determine your individual needs.

2. Depending on your blood work, your doctor may order you to have a biopsy done to determine the level of damage caused to your intestines from the undiagnosed celiac disease. This again is something that can only be determined by a doctor.

3. The only way to determine these things is to keep consuming gluten and get your testing done. You cannot have the tests done if you eliminate gluten from your diet before your testing because the results will be skewed. So, it won’t do you any good if you eliminate gluten now and then decide in 3 months you want to get tested.

4. I’ve talked to many of you who say that you may not have taken the gluten-free diet and lifestyle seriously without the celiac disease diagnosis. This may or may not be an issue for you. For me, I can tell you that if I thought I could get away with a little bit once in a while, my situation would be very different right now because I would be eating a soft pretzel every couple of months to satisfy my needs. BUT, because I know I have celiac disease, this is completely out of my mind. I wouldn’t think of is.

5. Fertility problems are a major issue with people who have celiac disease. If you plan on having children or are struggling with fertility now, I would recommend you get tested ASAP for celiac disease. I would hate to see anyone not get tested, go through infertility treatments, only to find out they could have solved the problems strictly by living a gluten-free diet and managing deficiencies.

6. There is potential for undiagnosed celiac disease to cause other major health problems as we grow older and even contribute to bowel and other cancers. This is something for you to be aware of as you get older to monitor your health.

Do you have a different story? Why or why not did you choose to get tested? I want to hear about it!~

Ask Rebecca: How do I convince my family to get tested for celiac disease?

askrebecca

This begins my new Monday segment of Ask Rebecca! I will pick one question per week from the Facebook page, messages and email and answer it to the best of my ability! Today’s question comes from Facebook – Judy Grover!!

“How do I convince my family to get tested for celiac disease?

Rebecca: I honestly don’t think there is any good answer for this. Just like anything else, your family has to be on board with thinking they have a problem and be willing to get tested. The testing is expensive and can be challenging to get an accurate diagnosis. If there are no obvious symptoms, the person is also less likely to spend the money on getting the testing done. My mom didn’t end up getting tested until I nagged her for months about asking her doctor. Then when she finally did ask the doctor, he gave her inaccurate information because he was not educated on the disease. He told her because she did not have diarrhea, she didn’t need to get tested. It wasn’t until after I gave her more detailed information about all the possible symptoms and encouraged her to get tested again that she finally completed the test. The doctor (whose results I believe are suspect) told her she did not test positive for celiac disease and she didn’t need to be concerned. Again, I don’t know what tests were run or if they were even checked correctly. So, that’s the only thing I can go on. What I would encourage you to do is the following:

  • Become as educated as you can be on the disease to explain the importance of getting tested. Without being able to explain the importance and why you think they need to be tested, it’s going to be a struggle to get them to do it.
  • Remember that not everyone has it in your family just because you do! We are quick to assume everyone has it or should get tested for it because we are diagnosed, when that’s not always the case.
  • Keep your family updated on your own medical journey. Don’t be overbearing about it or make constant digs because it’s likely to backfire.
  • Don’t forget that as adults, we have the right to get our own testing done. It’s our own health and bodies and we should do what we feel is right for ourselves and not anyone else. Haven’t you ever had someone tell you to get tested for this or that when you were struggling with your symptoms? Sometimes the shoe fit and you asked your doctor, but other times you felt you didn’t have the symptoms so it wasn’t worth getting tested. We should respect our family’s rights to do what they see fit with their bodies. We can’t control how or what they do! The only thing we can be sure of is that we are treating ourselves the way we believe is happy and healthy.

Did you successfully get your family to get tested? Please leave your story below!

 

Are Gluten-Free Foods Making You Fat?

Are Gluten-Free Foods Making You Fat?
Are Gluten-Free Foods Making You Fat?

Are Gluten-Free Foods Making You Fat?

Yes. Yes, they are.

This weekend the Celiac Awareness Tour cancelled the day before the event, leaving me with a prepaid hotel room in Philly for the weekend.

Aaron and I decided to go to the city anyway and use it as a little getaway for us. Jennifer Fugo from Gluten Free School and I decided to meet up anyway since we weren’t speaking at the event anymore.

She told me about the cool things she does over at her website and all the research she’s done on sugar and gluten-free, which really got me thinking….

While it’s wonderful that companies are coming out with more gluten-free options and versions of foods we used to love, we still don’t need them. Gluten-free snack foods are usually higher in calories and fat along with lower in fiber. They are the ultimate empty calorie. Most of the products labeled  gluten-free are equally as bad for us as those products we loved filled with gluten.

As a fitness expert, I see this every day. Clients come to me wanting to know why they aren’t seeing results despite cutting calories and then go on to tell me they substitute regular junk food with low-calorie junk food. Snacks from Weight Watchers and Skinny Cow always seem to pop into the conversation. These products provide no nutritional value for your body. “Weight loss” snacks are FILLED with chemicals and processed junk which does nothing nutritionally for you, despite the marketing claims on their boxes.

Once you’re diagnosed with celiac disease, it is a tremendous life change. You struggle enough with just figuring it out along with all the emotional turmoil from the disease and health complications. You just want life to be easy. The problem is that easy in this area makes you gain weight. All those “easy” gluten-free foods are horrible for our waist line. Pancakes are bad for you filled with gluten and gluten-free. Just because it doesn’t make our auto-immune system go insane, it still isn’t the best option for us. Those products can be just as difficult to digest and cause other problems like inflammation aggravation.

Aren’t you sick of the high prices of this junk anyway? Don’t you want to eat for fuel and for happiness than instant gratification?

I’m getting ready to put together some awesome celiac fitness programming but please know we are going back to the basics on it!

Foods filled with nutrition should be priority for us, especially as we are trying to heal our bodies. Think about using the 80/20 rule for this. 80% of the time, eat foods that are nutritionally sound and make your body happy. Use the other 20% to indulge on something worth while like a great piece of gluten-free cake, a sundae, wine or whatever is your guilty pleasure. I recommend this to all my fitness clients at Bexa Body Fitness. That is how I lost my weight before and how I’ve started to do it again.

Twenty pounds later, I realized I consumed entirely too many snack foods throughout the week. I did a much better job tracking my food throughout the week and paying attention to when I had snack/junk foods. This helped me see eating patterns as well. One of my favorite tracking apps is My Net Diary. I use it on my iPhone to track my foods and fitness. There are a million apps out there, but I just found this one to work. I believe in moderation and enjoying your life. I’m don’t believe in fad diets or extreme weight loss programs. If you can’t have some things every once in a while, you are less likely to be successful.

If you try this and still aren’t losing weight – A few things could be happening –

1. Your hormones are off.
2. You’re not managing your vitamin deficiencies properly. (Supplements too expensive? Find an online vendor with bulk discount prices like Powdercity.com)
3. You aren’t writing down everything you eat and tracking it correctly.
4. You may have other health complications.

You are probably saying to yourself right now, so what the heck am I supposed to eat?

Well, instead of having lentil chips right now, I’m munching on some carrots. I hard boil eggs and consume them throughout the day. Nuts are a terrific snacking item. We try our best to stick with whole foods for dinner.

Here’s an example of what we eat for dinner throughout the week:

Monday: Salmon, green beans & red skin potatoes
Tuesday: Burrito bowls – rice, beans, ground beef, lettuce, avocado, peppers
Wednesday: Shrimp with rice – add veggies and use some gluten-free soy sauce in moderation
Thursday: Brisket with veggies from the slow cooker
Friday: Steak, spinach and sweet potato fries

Everything is very basic but tasty!

What’s your go to whole food meal?

 

Would you know if you had a vitamin deficiency?

vitamins

Would you know if you had a vitamin deficiency?

Is it preventing you from healing?

I will admit. I hate taking my vitamins. I’m not very good and remembering them and of course this weekend, I’m out-of-town and they are sitting on my kitchen cupboard at home. I’m deficient in several different things and need them to feel at my prime, so why can’t I get used to taking them?

While celiac disease can’t be cured with a pill or a prescription, the secondary symptoms caused by vitamin deficiencies can be helped by using supplements. I go regularly to have my blood checked and am actually due to go this week prior to my check up appointment next week with Dr. Auckerman. He is actually retiring and this will be my last appointment with him, which I’m pretty sad about.

Here’s what I will tell you and suggest. If you are diagnosed with any kind of auto-immune disease, I believe you should get your blood work done 1-2 times a year to make sure everything is running like a well oiled machine. It’s important to get accurate measures of your levels to know what dose of the supplements you should take that’s individualized for your body. There are some significant deficiencies that are caused by bowel disorders and by adding these supplements into your daily regimen, you can help your body heal.

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Let me tell you what vitamin’s I take 2x per day. I preface this comment by saying I am not recommending these for you, I am simply explaining what I’m taking and why. It’s important to visit your doctor to have your own levels tested and get the appropriate amounts for your body. I’m not a doctor, I’m just a celiac patient and blogger sharing my experiences with you.

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Magnesium – Some of the symptoms of magnesium deficiency include dizziness, muscle cramps, muscle weakness and fatigue. I’d say these symptoms are some of the #1 questions I get asked about with Pretty Little Celiac. I take Cal Mag-D and Magnesium Citrate from Powder City 2x a day. One in the morning and one at night. Be careful with how much and what brand you are taking because they can cause you to have runny poo and very strange smelling bathroom experiences. If you think this could be a problem, ask your doctor to have your levels checked next time you are there! Are you looking for some natural ways to get magnesium into your body? Add lots of leafy green veggies into your diet. Almonds, cashews and soybeans are also natural carries of magnesium but I realize many of you can’t have these items.

Want some more reasons to take magnesium? How about that it helps to alleviate gastrointestinal distress? Or it can help you maintain your blood sugar levels? Or that it helps maintain and healthy heart and bones.

Read this fact sheet from the National Institute of Health on Magnesium!

Vitamin D – You can get vitamin D from fish, fish liver oils, egg yolk and in fortified diary and grain products. But what about when you can’t eat those things or are very limited? Most people in our country have a Vitamin D deficiency. I take 6,000 mg each day. Again the symptoms of Vitamin D relate to muscle weakness and bone pain. They can be subtle for most people but for those of us already struggling with bone and muscle problems, it can exaggerate the symptoms.

Vitamin B 12– This is one of the most important and over looked deficiencies, especially for those of us with auto-immune and bowel diseases. B12 deficiencies run rampant in people with diseases of the small intestine.  This is because we aren’t able to properly absorb it from our food. Some symptoms of B12 deficiency are being tired, pale skin, easy bruising or bleeding gums, stomach pains, diarrhea or constipation, mood changes, depression and tingling or numbness in fingers and toes. I always know when I’m not taking my vitamin’s consistently because I do suffer from the tingling in my fingers and toes. It feels like small pins and needles are poking away at my skin.

Cinnamon – This sneaky little guy could help you regulate your blood sugar, reduce LDL cholesterol levels and  reduce inflammation. My doctor said it also can help with hunger control as a side effect of assisting with blood sugar regulation. I take 2 pills int he morning and 2 at night. He recommends take them before meals. Many of you post about Candida and cinnamon assists with inhibiting the growth of this bacteria in your body.

DHEA Supplement – This was one of the tests I didn’t know anything about until the doctor did my tests. I was deficient in testosterone which can cause problems for me as a woman. Instead of trying to explain this complicated test and process, I suggest you read this article on Adrenal Health by Dr. Marcelle Pick. She explains it very well in this article. I know many of you suffer from mood swings, low sex drive, emotional distress and depression. This could be part of the problem. I would encourage all women who continue to struggle to get tested for this. I take 20mg/day. Read more about DHEA supplements at Serenity-Station.com.

Fish Oil & Omega 3’s – Did you know there are things called Omega-6’s? They are in all those packaged, processed gluten-free foods we consume to feel “normal.” They are also causing major inflammation in your body. Eliminating Omega 6’s from your diet, is a key component to healing our chronic disease. Omega 3’s are the superstars for our body. We need to focus on getting as many of this into our body as possible. They help with everything from asthma to cardiovascular diseases. You need DHA found in fish oil for your brain. It is one of the highest concentrated fatty acids in the brain and we need it to function.  Don’t your want your brain to be a well oiled machine? I take 6-8 of these bad boys a day. I need all the brain juice I can get.

Check out this article by Dr. Mercola on the problems with Omega-6. 

Just another reason to ditch those over processed, over priced gluten-free foods!

So, my advice for you is to get tested regularly for vitamin deficiencies to maximize your body’s ability to heal and fight off other problems that may occur. I can’t tell you what to take or how much to take, but I will tell you to go get tested! Any doctor can test for these and will know how to help you supplement for them. You don’t need to find a specialist unless your levels are way off and they refer you to a endocrinologist.

I’d love to hear your feedback! Tell me what vitamin’s do you take? Have they helped?

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Comments

  1.  Mindy says:

    Hello,

    Thanks so much for sharing! I have struggled with what to take for the 5 years since I became sick and diagnosed. The doctor had me on Vitamin B12 for the first year. I now only take a multi-vitamin a day which also has the Omega-3’s included. May be time for a change though since my energy level still has not picked up. The only time I have a burst of energy is after a good meal of protein. Otherwise I am sluggish.

    I am still a bit confused about how much Vitamin D to take. I recently heard that too much (over 2,000mg per day) is too much.

    I would like your feedback on this multi vitamin to see if you think it is a good product. I picked it because it is gluten free. I do have to get it by mail order. Here is what I take per day too.

    Pro-Biotiks brand (Gluten free Bio-35) http://www.pro-biotiks.com
    Jarrow Formulas – L-Glutamine 113 grams (heals stomach) this really worked after my biopsy
    Jarrow Formulas – Milk Thistle
    Sundown Naturals – Vitamin D3 2000 i.u

    I have also begun taking :
    Instaflex (for joint flexibility)

    Look forward to hearing your opinion.

    Thanks!
    Mindy

     

  2.  Laura says:

    Hi,
    Thanks for sharing this. The doctors (gastro, gyno, & general MD) that I go to never test my vitamin levels unless I specifically ask for them. I wonder if I should be seeing a Naturopathic type of doctor in addition to my regular docs to regularly test me for those.
    My recent tests showed that I am low in B12 & D, & was wondering how much B-12 you take per day and what form do you take it in? (sublingual or chewable tabs?) I’m also curious how deficient you are in vitamin D to be talking 6,000 IU per day? (I’m only taking 2,000 IU)
    Lastly, how many mg of the cinnamon do you take per day?
    Thanks!

     

  3.  Christina Nelson says:

    It was my “Very Low” Iron that finally had me take a hard look at gluten as an issue, even though I’ve not eaten red meat in 20 years. My doctor advised me to take Iron and B-12, even though my B-12 levels were “within normal range,” but they were in the lower third of that range. I’ve taken both sublingual and regular B-12 or B complex. If you have a severe absorption issue, sublingual can really help jump start you; I like the Trader Joe’s version with stevia.
    I had leftover Vitamin C and that helps iron absorption, so I added that and a general multi-vitamin that I’d taken intermittently for years. Since a lot of people are deficient and I avoid the sun, I added Vitamin D (also recommended for depression). I’d been thinking about Fish Oil Omega-3 for a while and finally added it after other recommendations for both depression and ADHD, as well as heart health. More recently I added Primrose Oil for PMS symptoms for the PMS week, and it seems to help my symptoms.
    I use a large Sunday- Saturday pill case and several smaller reusable pill cases so I have the vitamins with me. I have a hard time remembering also, especially since most need to be taken with food and I don’t always eat enough at a “meal” to take them (a yogurt or smoothie may not be enough). I also have a probiotic, but it’s in the refrigerator so I forget that even more often, but can at least add it to a smoothie. My previous probiotic didn’t require cold storage so I had it with my morning medications which is a more reliable routine.
    When I’m on top of my vitamins I feel so much better! I feel like I’ve finally gotten some energy and can be more productive. If I forget my vitamins all week, I feel more sluggish, unable to get up and grumpy. A good week is when I take them most days and a great week is everyday. I’ve experimented a bit too and am better WITH the B-complex in the mix. Everyone’s different! We have to find what works for us.
    Next appointment, I’ll ask for a vitamin panel; They rarely offer it. But especially with things like Iron and some fat-soluable vitamins or minerals, you CAN get too much! (I know Vitamin A and zinc are two.)

     

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