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How important is it to get a celiac diagnosis?

Carolyann
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Carolyann Newbie
Carolyann
Posted

How important is it to be “officially diagnosed” via bloodwork or biopsy given my history?

Symptoms: chronic loose stools, abdominal bloating & cramps for 10 years. Chronic migraines, diagnosed Hashimotos thyroid (autoimmune) for the past 50+ years.  History of colon polyps for the past 20 years. I am English (some Irish heritage). For several years I have had an aversion to breads & pasta. A little over a year ago I tested positive for HLA-DQ2.5 haplotype. I immediately went gluten free & my signs & symptoms resolved within a short time. I am terrified of going back on gluten in order to be diagnosed & wonder how important a medical diagnosis is given there are no treatments other than going Gluten-free? I’m 73.

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trents Grand Master
trents
Posted

Some people seem to need an official diagnosis to foster the resolve needed to keep from cheating on the diet. You know, "Maybe it's something else besides gluten." "Or maybe it's just coincidence that I get sick when eating wheat." Other than that, save the bucks. Your improvement when going off gluten is the proof in the pudding.

Carolyann Newbie
Carolyann
Posted
  • Author
6 hours ago, trents said:

Your improvement when going off gluten is the proof in the pudding.

Trent, That’s pretty much how I feel. I am a nurse & health educator (retired) & I’m pretty confident that my self-diagnosis is accurate & that my symptoms are not some other ailment. Ironically, a doctor friend (also retired) keeps urging me to get an “official diagnosis.” Yet, he cannot give me any strong reasons to be diagnosed by biopsies or blood tests. I see my internal medicine doctor in a few weeks for my annual exam so will  see what she says.

Scott Adams Grand Master
Scott Adams
Posted

To me it sounds like self diagnosis may work for you. A side benefit will be lower life insurance, and possibly private health insurance, premiums for life.

On the down side it may be harder for you to get follow up medical care, but many people who are diagnosed don’t seem to be getting this anyway. I have excellent health insurance through Kaiser, yet they’ve never offered me any follow up tests unless I’ve pushed them for it.

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    • PixieSticks
      Working in a kitchen with gluten?

      By PixieSticks · Posted

      Hi yes! I was diagnosed 10 years ago through a biopsy. I’ve been gluten free ever since but no one I’m around is gluten free. I sometimes wore a surgical mask in the kitchen. but I believe particles were still getting through. I’ll definitely look into n95 instead. thanks for the reply. 
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      By BoiseNic · Posted

      Ya I used to react to iodine, but it doesn't bother me anymore after strict adherence to a gluten-free diet for many years now. I am happy to report that for the first time ever in my life, a probiotic formula is not making me break out, but actually seems to be helping. The strains in this formula have been specifically tested to help with skin issues. It is gluten and dairy free also. 
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      @Whyz, I take a combination of Thiamin (Benfotiamin), B12 Cobalamine and Pyridoxine B6 for my pain and headaches.  Really works well without hurting the digestive tract.  Riboflavin B2 also helps with migraines.  Most newly diagnosed people have vitamin and mineral deficiencies.  Check with your doctor and nutritionist.   If you follow the updated gluten challenge guidelines, you can wait until two weeks (minimum) before your appointment, then eat lots of gluten, like six slices of gluten containing bread or "name your poison".   Here's the Updated Gluten Challenge Guidelines: Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer. While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.   Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.   References: https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/ And... Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader  "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced." Keep us posted on your progress!
    • Scott Adams
      Advantages vs. Disadvantages of having an official Celiac diagnosis

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      I don't believe that existing life insurance policies require such notifications--health checks are typically done before such policies are obtained. I believe it would primarily affect any new policy you get, and perhaps any policy renewal.
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      Feeling ill

      By Scott Adams · Posted

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