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, 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.

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!

 

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!~

Should You Take Digestive Enzymes for Gluten?

digestiveenzyme

Should You Take Digestive Enzymes for Gluten?

No.

I am frequently asked about gluten enzyme supplements and I just wanted to give you my opinion on them.

These so-called enzymes do NOT give you the green light to eat gluten if you have celiac disease. They are not a cure for celiac! There is a false belief out there that it is acceptable to take these pills with a piece of cake and you will be fine. It’s not that simple. There is NO PROOF or medical research showing that these enzymes work. Why? Because they are not FDA approved and the companies can make whatever claims they want about their products except saying it cures and treats disease.

Now, some of you will say “Hey! I use them and they work.”

Do they really? How do you know what they are doing to your intestines and body chemistry? How do you know they aren’t causing internal problems?

I seriously doubt an over the counter supplement that’s $18 from WalMart is the latest and greatest treatment or medication for celiac disease.

There sure seems to be a lot of people saying they “aren’t getting better” or “still feeling sick.” A part of me can’t help but think some of that is due to the false sense of security from taking these medications.

While these “gluten enzymes” may break down some particles of gluten, there is no way for sure to know if they are gone and not causing damage to your body. Why take that risk? Save your money and buy some supplements your body can use effectively and will help you with healing and digestion!!

The ONLY way to manage celiac disease is with a strict, dedicated gluten-free diet. It makes me a little sad when I hear people say they wish they could just take a pill because your body is clearly telling you it doesn’t want gluten and clearly rejects it. We are the only people who can manage their chronic disease with food and in a natural way which should be a blessing to all of us!

Now, there is a company that filed for patents for enzyme use in medication to treat celiac disease. Alvine Pharma is working towards finding medication for all of us suffering from this disease. They are in phase II of clinical trials but nothing has been approved yet.

ImmusanT is a potential vaccine for celiac disease which is showing promise. They are still in the early stages but it is promising to know that there are things in the works for us!

Are you looking for information about gluten poisoning? Check out my post with 47 commons symptoms!

Have you been poisoned and are looking for help on healing faster? Check out my post with 20 tips and ideas for gluten poisoning recovery! 

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

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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!

 

Would you know if you had a vitamin deficiency?

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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 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.)

     

  4.  Orthomol best multi vitamin says:

    You have hit the mark, in it something is also to me it seems it is very good idea. completely with you I will agree. vitamin d12 Orthomol

Getting Started with Celiac Disease: Podcast

started-with-Celiac

On The Air with Pretty Little Celiac Getting Started with Celiac Disease

My newest podcast from this week is up and ready to go! I cover the basics of getting started with celiac disease. Basically all the things you need to know after you leave the doctor’s office.

Were you recently diagnosed with celiac disease? Are you struggling with what to do after you left the doctor’s office?

This podcast is for you.

I cover what to expect after your diagnosis including:

1. Emotions you will feel

2. Tips to get through everything

3. A get started guide on living gluten-free

4. Major changes in your life that need to happen for you to be successful

Please leave feedback! I’d love to hear it. 

Gluten Free Fast Food Options

glutenfree-fast-food

Gluten Free Fast Food Options

One of the biggest challenges I faced when eliminating gluten from my life was trying to find something I could quickly grab when I was out and about. Often, my day runs back to back and I’m not great of preparing and planning my day around food. So, I really struggled with making sure I had safe snacks with me consistently or ended up going to a dine in place just because I knew they would accommodate my gluten-free life! But that habit became too costly and I needed to get better about planning my meals.

But, sometimes you are in a jam and need something quick. Maybe you left your lunch at home or an out of the office meeting ran late, leaving you hungry with no time to get back to the office. What do you do? Where can you go?

When doing research on these companies, numerous other sites popped up offering information as well. I will tell you when doing research to go directly to the company as your best and most accurate information on safe choices for that restaurant. Every link I put on this site is directly from the website of the company and effective as of May 6, 2013.

Fast food disclaimer of mine: Please be aware the risk of cross contamination is high at any of these fast food joints. They are taught to do things quick because no one wants to wait for fast food. You can’t be sure they are handing your food safely or that proper precautions are being met to keep you safe. Any of these options are an eat at your own risk!

McDonald’s – I hardly ever eat here because it seems the only things safe are condiments. There is strong controversy over the french fries, its not very clear. They don’t make it very convenient to locate items with specific ingredients on their list of allergens either. It’s a gigantic list of every single food they offer with the ingredients listed. There is no chart and its extremely hard to read.

Wendy’s – This is my fast food stop whenever I’m caught unprepared or traveling. Their website has pages dedicated to the issue and they make it a point to let you know they understand and what options are available to us. This ONLINE GUIDE provides their options! My go to item is a baked potato with cheese. I could eat them every day. Wendy’s are all over the place so it makes it a perfect stop on our road trips!

Taco Bell– When I was first diagnosed, I couldn’t find anything to eat here. It seems with doing my research for this article, they improved their gluten-free selections and actually have some options. Check out Taco Bell’s offerings.

Burger King– Similar to their competitor McDonald’s, Burger King struggles to offer much for those of us eating gluten-free. Their burgers with no buns and condiments appear to be the minimal selections on their list of gluten-free menu items. As much as I’d love a packet of ketchup and a 2oz greasy burger, I think I’ll pass.

Kentucky Fried Chicken – “Yeah, can I get a tomato slice and a honey barbecue packet?” Or at least that’s what I’d order from KFC’s gluten free menu. I stopped eating KFC about 10 years ago when I watched a video of their employees horribly abusing the chickens but I’m pretty sure going gluten-free is another reason I won’t be visiting here anytime soon. Just another quick fix fast food chain offering up condiments and sides as their “gluten-free menu.”

Noodles & Company – I’ve had a mixed bag of success here. Sometimes it’s a great experience with no problems and other times I end up with regular noodles in my dish. They have done their homework and offer a great allergen and nutrition guide. I would love to see the same amount of enthusiasm go to training and educating their staff at the different locations! Be very clear when you go here and hopefully they will treat your food right.

Chipotle – Pretty much anything here is good except the flour tortillas. Check out their allergen and gluten free guide online.

Pei Wei – This chain is the little sister of PF Changs so it’s no wonder they know a thing or two about gluten-free. Their edamame needs to be requested gluten-free because they use chicken stock in making it regularly. I find this odd especially since this is a popular side dish for vegetarians and I’ve never seen it marked as being cooked in chicken. Check out their allergen and gluten free guide online.

Five Guys Burgers and Fries – I’ve heard wonderful things about them from other people but was sad by the information on their website. It isn’t very clear if they are gluten-free or not. It just says our buns contain… but nothing about the fries or meat being gluten-free. Several people told me they cook their fries separately and will make you a naked burger with no bun. If you know more than what they put on their website, or have a good experience, please post it below!

Sonic – How about a naked hotdog and a sundae? I’ve actually eaten that before here so don’t judge me…lol This is another one that’s tough to find some good options for gluten-free menu items. In desperate times, you can find something but I wouldn’t plan on actually eating here on purpose!

Carl Jr – They do have a low carb burger but gluten isn’t even listed on their allergen menu. They indicate which products contain wheat but not gluten. We don’t have them in Ohio so I can’t tell you what I’ve experienced. Have you been there? Let us know!

Del Taco – Avoid like the plague. Don’t believe me? Check out their menu which lists everything except soft drinks as containing gluten.

In N Out Burger – No allergy information listed on their website? Really? I find that extremely odd. But here is their menu of nutritional information.

El Pollo Loco – Just like anywhere else, eat here at your own risk. They don’t have a dedicated fryer but actually give a great disclaimer to say the risk of cross contamination is extremely high. They have a list of gluten/wheat free items on their site for those who are avoiding or can tolerate a small amount.

Chick-Fil-A – They have a few options for you! They specifically state it is a challenge to prevent cross contamination but they do have policies in place to reduce the risk. I wonder why the kids chicken nuggets are gluten free but the regular ones are not? How are they different? I’m going to have to check it out next time I’m over that way! Here is their list of nutrition and allergen information.

Coping with Celiac Disease: A Therapist’s Perspective (Podcast)

Coping with Celiac Disease: A Therapist’s Perspective

When I was first diagnosed with this disease, I didn’t understand it and struggled to figure it out. Some of you are there now and are looking for help or some of you think you have it figured out but maybe just need to hear something new. I invited Jummy Olawale on my show to talk about the most common struggles associated with celiac disease ( besides the food!).

I’m so glad I decided to do this. Her insight is poignant and dynamic. She really gives inspiration and hope along with tips and suggestions for dealing with this disease. She’s doesn’t have celiac and isn’t a specialist in the disease but really can provide some help for those of us needing help. If you feel out of control or like you lost your footing, this is the perfect place to start.

Here’s a little snippet of what we discuss on the show:

1. What are some coping skills to use when someone goes through a major life change like celiac disease? When everything in your life as you know it, changes in an instant? How do you handle the sense of feeling alone and like a hypochondriac because no one else understands the complexity or the seriousness of the disease?
2. What are some coping skills for handling all these emotions? Sometimes we can have other life issues going on and this is just a huge burden on top of the lemons life throws at us. Especially when you have a bad day and just want to go home, order a pizza and lay around all night.
3. What’s the best way to explain a disease like this to husbands, family, kids and friends? How do you get them on board with helping you instead of constantly minimizing the disease and asking you to just “try a bite because it won’t kill you.”
4. How do you handle the disappointment when family and friends (or your spouse) doesn’t sympathize and isn’t as supportive as you think they should?
5. Marital problems – Handling a non-supportive spouse – what do you do? When your spouse is the only one that understands, how do you find other outlets to cope instead of stressing them all the time.
6. Changing you mindset of food being pleasurable and instead of thinking about it as fuel. People get so upset that they have to eliminate all the things they love that are poisoning them. When they get poisoned, they beat themselves up and get mad at their bodies for betraying them.

On The Air with Pretty Little Celiac is also on iTunes! You can just search “Pretty Little Celiac” and subscribe to it and all the episodes will feed right into your player!

Want to know more about Jummy Olawale?

Jummy Olawale is a dynamic speaker, life coach, Licensed Professional Counselor, Pastoral Counselor and Licensed Chemical Dependency Counselor with extensive international and multicultural life experience and education.
Biography

Jummy was born in Nigeria, Western Africa where she lived and attended elementary and secondary school. She migrated to London, England where she completed her High school and college education. She earned her Bachelor of Arts (BA.) degree in Psychology and Natural Science from Canterbury Christ Church University College, Kent. After getting married, she migrated to the U.S. where she now lives with her husband and their two children. Jummy earned her Masters of Arts (MA.) degree in Counseling Ministries from Methodist Theological School in Ohio.

Jummy utilizes narrative therapy, cognitive behavior therapy and motivational interviewing approaches. She specializes in individual, couples, and marriage therapy, multicultural counseling, parenting support, career coaching and life coaching.