I have T1 Diabetes, underactive thyroid and Vitiligo. All are related to Coeliac from what I know.
I read somewhere that diagnosis of Coeliac in T1D can be more tricky - I don’t know if this is entirely true. My Serum Total IGA came back slightly out of range but it is saying the result is “satisfactory” (4.88; range 0.63-4.84). I’m due to speak to my Dr tomorrow but as it has been marked satisfactory I know they will say that I’m fine (they have done before). It’s not that I want to be diagnosed as Coeliac but I feel so crappy in my day to day life that I would prefer to know something if it’s going to improve my standard of living.
I feel so much worse when eating Gluten but without diagnosis it is somewhat difficult to get people to fully acknowledge that I medically need to steer clear.
my question is two fold:
firstly, is my result anything of concern and/or should or could they have done more tests to rule it in or out;
secondly; is there anything I should be aware of before speaking to my GP tomorrow as I want to be fully armed with facts on whether I should let this go or whether I should demand further investigation.
massively appreciate any help
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FishfaceMcGraw
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Hi. Hopefully can offer an helpful reply to your question.
First, it is a “Coeliac Screen” blood test that is usually done on the NHS, and the tests needed initially to help suggest coeliac as likely or not. It does not diagnose but suggests whether further tests needed - usually gastroenterology referral to gastrointestinal endoscopy and biopsy to confirm.
The blood test is for Total igA, and igA TTG (anti tissue transglutaminase antibodies). Was this done? Total igA is part of it, usually to make sure there’s no igA deficiency to make sure the igA anti tissue transglutaminase result is accurate - which is the important test for specific for coeliac disease. You’re “satisfactory” Total igA is normal though a bit raised (may suggest inflammation somewhere). What is your ttg result? If that’s not been tested, that’s what you need to get tested. Also its important to be on a gluten containing diet for tests to be accurate. If it is normal range it’s unlikely active coeliac disease. But that’s not to say it cannot be triggered later.
Second, have you any symptoms associated with coeliac disease? Bearing in mind not everyone has the classic digestive symptoms. Some can have mostly neurological symptoms.
Having said that, you’re absolutely on the right track regards gluten association with thyroid disease and Type 1Diabetes. This is clearly reported in the scientific literature and new research keeps coming out. Gliadin (gluten) cross reacts with the thyroid, and studies show there’s benefit to following a strict gluten free diet. Type1D shares similar genetic susceptibility though in terms of antigens it is milk protein that is stronger associated than gluten according to studies but nonetheless both implicated by molecular mimicry.
The common denominator is autoimmunity. You’re right to push for investigation as you’re far more at risk of Coeliac disease with already having autoimmune diseases.
It’s important to get tested before following a gluten free diet. Bear in mind a negative blood test does not rule it out. Only a biopsy can confirm a diagnosis. And it’s true in type 1s igA ttg antibodies can be transient. But if tests positive further tests are needed to rule it in or out.
It’s true that diagnosing coeliac disease can be complicated. If after all that tests normal but coeliac’s is suspected, especially if you trial an elimination diet and see improvement in symptoms and health, a DNA test for genetic susceptibility and risk can all but rule it out. There’s a few companies offering these tests privately. It’s possible to get tested if recommended by specialist on the nhs but not mainstream. Also bear in mind the nhs and some private companies only do the standard genetic typing test looking for the two high risk alleles HLA DQ2.5 and HLA DQ8. There’s an extended test that looks for all 16 associated risk alleles (known to date as research ongoing). Most coeliacs in Northern Europe carry the DQ2. Studies are coming out showing variation among countries. So genetic susceptibility comes down to ancestry.
Great answer. I am currently under investigation for Endocrine symptoms including adrenals. A late diagnosis of Celiac after false negative IgA. I am interested in T1D answer as have symptoms. Also low Thyroid. Thank you.
Sorry to hear. I’ve been reading up on genetic susceptibility as had the DNA test. The NHS ruled out high risk DQ2 and 8 a couple years ago. But because I was so ill and losing weight from the gluten challenge couldn’t complete it in order to confirm a diagnosis, was advised strict gluten free diet. This helps but it hasn’t resolved all my symptoms and I keep reading up on the latest research. Recently there’s new research on genetic susceptibility so I decided to test again and found out have low risk alleles DQ2.2 and 7. Plus have lactase non persistence. This was a game change for me as it made sense. I was allergic to milk as a child and still don’t do well with it, I’ve tried numerous elimination and reintroduction diets. There’s rheumatoid arthritis in the family - the research shows this is antigen driven too and antibodies to milk involved. There’s a bacteria in milk that survives pasteurisation that researchers have linked similar in RA and crohns patients. Newly diagnosed Type 1s and LADA patients have antibodies to milk according to research. Though a cause never been proven.
The thing about autoimmune is there is likely a culprit antigen for each one so it’s like trying to find a needle in a haystack. It has been said coeliac disease provides a blueprint for all others as it’s the only one to date with a known antigen - gliadin (gluten).
Thyroid tissue also cross reacts with gliadin but not proven causal to date. Milk protein casein cross reacts with gliadin. There’s many pieces of a puzzle! It’s a real rabbit hole to go down trying to figure this out.
In terms of diet therapy, when faced with several autoimmune diagnoses. I would be aware of certain foods and start by trialling elimination of all the known cross reactive foods with gluten. Ensure a nutrient dense diet and optimal intake of vitamin and minerals. Low carb high fat or a paleo diet approach is great for this. If applicable get rid of all processed foods.
The research by Vojdani 2013 is helpful. Cross reactive gliadin foods include yeast (bakers and brewers), milk, cheese, instant coffee (unless states gluten free by manufactures), millet, oats, corn and rice.
Gluten free oats are something to watch out for with DQ2. There’s a study showing the molecular basis of oat intolerance in Coeliac patients that causes villous atrophy and ongoing inflammation - even in those asymptomatic.
Oh you are so right. How interesting that they found your lower alleles and just goes to show. I do stay away from oats even gluten free as cannot tolerate them. Also I have two lower risks DNA lactase positive genes so on tablets and cut dairy down taking calcium from leafy greens etc. I believe my Celiac being missed has been instrumental in the AI onslaught on my body. By them time it was on the radar all my gamma globulins had all been depleted (im hypogammaglobuanemia also), so went on to be missed re blood tests false negative. I was throwing out constant cd4/cd8 raised which is a flag for autoimmune conditions but by then already has other clusters, thyroid, Sjogren's, borderline diabetes and so on. The journey continues as now more Endocrine. Take care.
Definitely a journey. You’re so right too. Autoimmune all stems from the gut, sorry to hear Coeliacs was missed for so long and what you’re having to deal with now. Take care too and best wishes 🤗
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How many of you in the UK can eat everything clearly labeled as gluten free?
Oh, I'm 'super sensitive' don't you know......gluten free labelling of a different type!
