The Test Results are Here…

Well, after months of doctor’s appointments, blood draws, tests and procedures – I finally have some official answers. A couple of weeks ago, my gastrointestinal doctor called me with the results of my blood test and endoscopy after consuming gluten for weeks to prep for the tests. My last investigative tests were done in October 2013 and everything looked great. But, I had been strictly gluten-free for almost 2 years. The only way to get accurate results is to consume gluten again. Let this be a valuable lesson to you that BEFORE you get any testing done, you continue to consume gluten and your normal diet. I can’t emphasize this enough. I write about it a lot on my blog and in social media. To get accurate results, don’t change anything before seeking medical help.

So…

After years of thinking I have celiac disease, it turns out that I actually have non-celiac gluten sensitivity and Barrett’s Esophagus. There is a great article by Jane Anderson on about.com regarding this and it’s correlation to celiac disease and non celiac gluten sensitivity.   I mentioned in a previous post that I was on a mission for an accurate diagnosis because of education from the International Celiac Disease Symposium. I didn’t believe the tests I had done were accurate or enough to confirm a celiac diagnosis. Obviously, I am frustrated and disappointed that yet again I went years without an accurate diagnosis.

The symptoms of non-celiac gluten sensitivity can overlap with celiac disease, but they also have different ones as well. According to the National Foundation for Celiac Awareness, “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.”

I specifically struggle with the joint pain, inflammation, numbness and head aches, which looking back makes total sense. Even after consuming gluten again, I didn’t get the major stomach aches that I used to get before going gluten free. I was very bloated but I didn’t get sick to my stomach and that surprised me. It also reinforced my decision to go forward with the testing to get accurate answers.

So, what about the Pretty Little Celiac? Well, the reason I started this blog was to not only share my stories (the good and the ugly) but I wanted to advocate for this disease. This experience for me just reiterates how complicated getting a true diagnosis can be and the emotional and financial toll it takes on a person going through all of this. All of these experiences taught me so much about living gluten-free and celiac disease. Meeting all of you virtually through the internet and social media, along with all of the people I met at Expo’s taught me so much. Just because I don’t have celiac disease, doesn’t mean I will stop advocating for all of you and the gluten-free lifestyle. I am not going back to eating gluten because it really does make me sick and makes me feel terrible.

My experiences going forward will be more based on gluten-free living and the challenges and life lessons associate with that. I want to focus a lot on the challenges associated with gluten-free living but also the other auto-immune diseases that I struggle with such as Endometriosis and Hashimoto’s Hypothyroidism along with GERD/Barrett’s Esophagus. Obviously, with a name like Pretty Little Celiac, I would never want to deceive anyone to think that I have something when I don’t. I am going to spend the next few days or week brainstorming options, but if you have any ideas – let me know.

I’m sharing this information with you because I want to have full disclosure. I want you to know despite thinking I had all the answers 2.5 years ago, things change. New information is discovered and that’s okay. At first, I didn’t want to let all of you down but then I realized this is just part of the journey, part of the discovery and frustration that we all go through trying to find answers.

Have you had a similar story? I would love to hear about it. Email me or post it in the comments below for others to see we aren’t alone.

Thanks for being so loyal and such awesome followers.

Comments

  1.  Sue Rice says:

    Thank you for sharing your journey and this next chapter you are about to begin. You continue to inspire to a life of wellness, no matter what your health challenges are labeled.
    I really appreciate, as do many others I would think, how much information you have made accessible and how many people you touched along the way.
    I hope you will keep us informed of your new endeavours. I too suffered from Endo for many, many years until surgery. Best wishes and I look forward to cheering you onward on your new path.
    Sue

     

    •  Rebecca Black says:

      Sue, Thank you so much for this heartfelt comment. I appreciate it more than you can imagine! I’m going to keep almost all of the content on this site and probably transfer it over to my new blog http://www.RebeccaRefined.com – that way people can still find a lot of the information that is still relevant! I think the comments from thousands of people are just as important as my blog posts for people to be able to see they aren’t alone. That was the whole point of this blog was to let people know they aren’t alone in this journey!
      Glad to know you will stick around
      Rebecca

       

  2.  Erica Markee says:

    Hi! Thank you for sharing this story. Im in the process of finding a diagnosis for myself. This is all new to me and over the last 2 months what I’ve always thought of as just “a fast metabolism/digestive system” come to find out I have osteopenia and all my celic panel blood tests came back as strong positives.. I’m waiting for my biopsy, my youngest son is going through all of this as well.. Can you let me know what your blood tests were like? Did you have the antibodies on the TtG tests as well as positive gluten allergy tests? Thanks for any help

     

  3.  Chatmal says:

    I’ve been following you for a while (about 2 years now) and am part of the support group. I too am non-celiac, so they tell me. I get much of what you described: immediate runs followed by brain fog, possible migraine, fatigue. I’m not even sure what else anymore! I’m not willing to eat gluten because of how terrible I feel when I get glutened, but I may still do the gene test to be sure. Auto-immune diseases seem to run in the family so it’s hard to tell if there’s something else wrong with me or if that’s it. Clearly there’s more work to be done! I’m just grateful to have insurance again so I can continue the quest for answers.
    In my own trials, I think I may also be Corn Sensitive. I’m testing it now. I instinctively was avoiding most bread, pasta, oats and processed foods. So far, I think Corn gives me brain fog, fatigue even with 12-hours sleep, bloating, inflammation, joint swelling / achiness and weird skin breakouts that are not like normal pimples (for someone over 40?). Blemishes appear about 2-4 days afterward and have been on my neck, cheeks and earlobes (??). Most of these symptoms actually seem to have a 24-36 hour delay which is why it’s been so hard to notice and associate with corn. Perhaps it’s why 2 days after a party with tortilla chips and salsa or guacamole, I’m zonked and can barely get out of bed!
    Corn is such a special ingredient! It’s in everything — candy, soda, GF chips, GF breads & baked goods, and practically every medication has corn starch! It explains why I was fine with my homemade brownies with corn-free flour, but not after a store-bought cupcake. I’ll have to find my threshold since I need my daily meds!
    So, Rebecca, just know you’re not the only one on a health quest! And part of the quest is hoping the doctor, PA or NP will listen to us and our crazy-sounding theories!

     

  4.  Nancy says:

    It must be a bit of a relief to know that you can move forward knowing that you do not have celiac disease. I started following your blog about a year ago when I suspected that gluten was the root of my issues: brain fog, lethargy, numbness in my arms and feet, headaches, and such. Ultimately, I was diagnosed with Hashimoto’s which shocked me. Since then, I try to eliminate as much gluten as I can from my diet, and it seems to be working. Stress is the biggest trigger for me now. I will continue to follow you, and I wish you the best of luck with whatever the future may bring.

     

  5.  Kaila says:

    Wow, what a touching story. I’m so glad that you were able to find some answers. My story is almost the opposite of yours. I presented as a celiac with atypical symptoms. Now, I had weight loss and stomach pains, but they were mild in comparison to my other problems. My GI looked for everything but celiac. (I claimed wheat bagels were the only food that made me feel better). During my diagnosis process, I gained such a deep respect for my GI because so many diseases/conditions have similar symptoms when you’re looking into the digestive tract (and even other immune problems/organ systems too!). Once I went gluten free (post Celiac diagnosis), my acid reflux magically disappeared within days. I hope that the Barrett’s Esophagus diagnosis helps solve/explain some of your other conditions, and I look forward to following your blog to learn more about your journey.

    After years of thinking I have celiac disease, it turns out that I actually have non-celiac gluten sensitivity and Barrett’s Esophagus.

     

  6.  Hayley Haynes says:

    How long did you eat gluten before getting the blood test panel done to test for celiac? I am working with my new thyroid dr taking Amour and my chiopractor (for fibromaylgia) to feel better but if things don’t improve want to test for food sensitivities. The test is expensive so I want to do it correctly but dread the side effects of adding gluten back into my diet.

     

  7.  Pats44 says:

    For me it makes little difference. Gluten is bad for you, so avoid it. I am either coeliac or have ncgs. I only found out by doing the Fodmap diet – had no idea what coeliac or gluten was before and despite many trips to the docs had never been tested. No ive been gf for almost 6 months and theres no way im glutening myself for weeks for a test, just no way. So I’ll continue to eat GF and take vitamins

     

  8.  Angela says:

    Virgin coconut oil is the best thing to take for GERD,, by the spoonful, up to 3 tablespoons per day.
    For inflammatory bowel conditions, eat two Mrs Crimbles coconut macaroons (gluten-free) per day.
    Very best wishes
    Angela

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.

 

 

Taking Control of Negative Events in Our Life

I can’t even believe it has been a month since I last posted on this blog. I apologize greatly for being missing in action. When we moved to Virginia from Ohio, we thought we had everything taken care of with my business and our house and right before Christmas, all of our planning fell through leaving us with a  lot of unplanned work. I’ve been going back and forth to Ohio much more frequently than I anticipated and it’s sucking up much of my time. I promise I’m not neglecting you!

But, through all of the emotional turmoil and personal things I’ve been going through, it really made me want to do a post on processing difficult situations. It seems like the last 2 months have been filled with chaos from multiple areas of my life!  I’ve written before about the emotional struggles when going gluten-free or getting a celiac disease diagnosis but I think it’s important to emphasize these feelings happen much more in our lives than we anticipate.

With everything I’ve been through in my life, I believe I’m a pretty strong person. I try to live a happy life and take things with a grain of salt, but every now and then something happens to shake me to my core. After all these years, I can say I make a pretty mean lemonade. (from all the lemons thrown at me of course!)

I want to share with you how I handle these situations.

One of the biggest challenges I faced recently was feeling betrayed by someone I trusted completely. This shook me to my core and caused feelings I haven’t had in a long time. But, what it showed me is the feelings I’ve had for this event are the same for when I was diagnosed with celiac disease, my miscarriage, realized gluten-free is for life or any other health problems I’ve discovered in the last 2 years.

We all grieve differently. Grief isn’t just something happens when someone passes away or leaves our life forever, it happens when major life changes cause us to question everything. You start to think about what you could have done differently, what you should have done or how you could have prevented the situation. For me, anxiety takes over my body for a few days and so does a somber and angry person – who frankly, I forgot existed. When I process these events, I go through the same process every time. Maybe these sound familiar?

First, I cry. I actually remember telling my husband when we first met that I “never cried.” LOL Yeah, Right.

Second, I want to be left alone. While I love and appreciate the texts, emails and messages, I really just need time to process the situation and my feelings. I also use this coping method to protect those around me because I tend to become angry and snappy while projecting my hurt onto them. I realized over the years that I just need to be alone.

Third, I process the situation. I run through the scenarios. I need to go through steps 1 and 2 to be able to effectively complete this step or else I end up with lots of irrational thoughts!

Fourth, I start planning for what’s next. I realize what is done is done and now I need to take action and move on. I need to grab the reins and start steering the horse, taking control of the situation.

And, finally, I learn from the situation. Setbacks, adversity, negative events are all a part of life. It happens to all of us. I don’t typically take the “why does this always happen to me attitude” and if I do, it doesn’t last long. If we can’t learn from our mistakes, we can never get better, never move on and never find our happy place again. We live in a world of anger and resentment with that situation controlling our lives. I don’t know about you, but I would much rather have the happy Rebecca in charge of my life instead of the Debbie Downer Rebecca.

I am fortunate to have this blog and lots of readers to share my stories with! But, I’m just one person. There are thousands of you out there who have similar stories and I think there should be a place for all of us!

In case you didn’t know, Andrew Cordova and I have a GFMagazine podcast that you can find on iTunes. We have a  bunch of episodes on there about coping and I have them on my Pretty Little Celiac podcast as well. In the last 9 months, we realized through all of the feedback from our readers that there is a need for a community to safely talk about issues like this one. A place where we can process our feelings, without feeling defeated or bullied online.

That’s when we came up with the idea for the GFree Community. We are in the pre-launch stage, but we are trying to get people who might be interested in this to sign up for more information. So far, we are thrilled at the response we’ve received already since we first started promoting it last week. Just click here to find out more and to join us!

I’m ready to start blogging again so you will see much more from me in the near future.

Rebecca

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!

 

Workout of the Week – July 8th 2013

wowjuly812
Workout of the Week

This weekend, I hit a number on the scale I thought I would never see again. I feel amazing but I don’t look the part, which is always a struggle for me in the fitness industry. I absolutely love my clients because they encourage and support me as much as I do them and they never judge me for what I look like because I have the knowledge and education to help them. They realize my health problems have taken a toll on my body and I continue to struggle with random things as they come up which is just part of living with a chronic disease.

For the past few weeks, I’ve been experimenting with different workouts and am realizing, shorter and more intense workouts are getting the job done without leaving me sore for a week and preventing me from getting a workout in the rest of the week. This is the most incredible feeling. It’s like when you are working on a puzzle but you can seem to find a key piece that’s holding up the rest of your board.

I’ve been playing around with foods as well and am realizing after an internal struggle of not wanting to give up corn and grains, I think they need to go bye-bye. I just feel better when they aren’t in my life. I’m less bloated and I feel like I have more energy. I need to stop fighting my body and go with the flow.

I’m very petite and adding 30 pounds to my frame is a lot of weight. It’s time to focus, create a goal board and stick to the program. Now I know what my limitations are and what works for me, I can finally create a program for myself that will trigger weight loss and help build lean muscle with a good diet and supplements.

My before pictures are taken and tucked away in a secret file. I think to hold me accountable I will post the progress pictures every other week. That will keep me in line with following the guidelines of my program along with allowing me to see results. What I’ve learned in the last 5 years, is you can’t use the scale exclusively to see results and I’m going to show you exactly what I mean in the next 3 months.

The past few weeks, I’ve limited my intake of sugar and am feeling pretty good! The cravings are going away which is something that happens if you can fight through the cravings in the first 10 days. Food will taste much better when you eliminate fake sugars and corn syrup from your life. It takes a bit of time for your taste buds to adjust but when they do, you will be pleasantly surprised!

I’m excited to take this journey with you. I hope I can inspire you to do the same!

I will post workouts throughout the upcoming weeks and an example of what I’m eating during the day to help you with ideas on getting fit yourself. I’m working on videos as well which I will post each week on the YouTube page, so make sure you subscribe!

 

Your Top 6 Questions about Gluten Free and Celiac Disease Answered!

Your Top 6 Questions about Gluten Free and Celiac Disease Answered!

Tune in to hear what I have to say!

You can subscribe to my podcast from your iTunes player to make sure you don’t miss an episode.

6 questions I answer –

1. Do I really need to replace all my items?

2. Do I really need gluten-free beauty products?

3. What do I do when I find myself craving gluten filled foods?

4. How do I deal/cope with the frustrations of celiac disease?

5. Are those digestive enzymes like GlutenCutter safe for me?

6. How do I take control of my weight after going gluten-free?

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!~