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- Rogol72 replied to sillyyak52's topic in Coping with Celiac Disease5Family education
Hi @sillyyak52, I empathize with you. I would suggest showing them pictures of "dermatitis herpetiformis" which is a complication of undiagnosed/untreated Coeliac Disease. You can find them on Google images. It's pretty alarming to see and it may be the wake up call they need to visually understand what gluten can really do to the body. In this case... -
- AndiOgris replied to AndiOgris's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2False blood test positive?
Hi Trents, Thanks for your response! And yes, the TTG-IGA was the only test done. We did some more general blood tests at the time of the initial celiac test in 2023, but none showed any deficiencies usually associated with celiac disease. I'll mention the new gluten challenge guidelines to my doctor, perhaps he will ask me to do the test again... -
- captaincrab55 replied to sillyyak52's topic in Coping with Celiac Disease5Family education
Welcome sillyyak52, I'm not sure of your age or if you live with your parents. Is there a nurse in your family or friend of the family that may be able to explain your diagnoses? You can get a second opinion by taking your lab results to another GI Doctor. Good Luck! -
- trents replied to SaiP's topic in Coping with Celiac Disease11Dangerously underweight, Perfect gluten free and insomnia
So, you have three symptoms of a gluten-related disorder: weight loss, brain fog and lose stools. Of the three, the lose stools that firm up when you cut back on gluten is the only symptom for which you have reasonable cause to assume is connected to gluten consumption since the other two persist when you cut back on gluten. But since you do not have any... -
- trents replied to AndiOgris's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2
False blood test positive?
Welcome to the forum, @AndiOgris! Recently upgraded guidelines for the "gluten challenge" recommend the daily consumption of at least 10g of gluten for at least 2 weeks to the day of testing to ensure valid testing, either for the antibody testing or the endoscopy/biopsy. 10g of gluten is roughly the amount found in 4-6 slices of wheat bread. So...
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Hi @sillyyak52, I empathize with you. I would suggest showing them pictures of "dermatitis herpetiformis" which is a complication of undiagnosed/untreated Coeliac Disease. You can find them on Google images. It's pretty alarming to see and it may be the wake up call they need to visually understand what gluten can really do to the body. In this case the skin ... The Coeliac rash that won't go away without a strict gluten free diet and Dapsone treatment (a toxic antibiotic). I'd also look at @glutenhatesmyguts on youtube ... a funny educational take on Coeliac Disease ... the clips titled as follows may help ... "Celiac Disease Explained | Why Gluten REALLY Hates My Guts!" and "Story time: I almost ..." This person is on Tiktok also and has a category "Coeliac & gluten-free Info ". There's plenty of Coeliacs on Tiktok and IG posting frequently and advocating for themselves about the need to be strict and what happens when they get glutened. Celiac Canada also has good resources on YT, both long and short educational clips ... @CCACeliac . Do you know any Coeliacs in your area who could help you explain the need to be so strict? Some Coeliacs have mild symptoms while others have awful reactions to just a few crumbs. Or maybe the nurse could put you in contact with some other Coeliacs or a support group to help you with your family. Hope this helps you. And keep advocating for yourself no matter what. -
Hi Trents, Thanks for your response! And yes, the TTG-IGA was the only test done. We did some more general blood tests at the time of the initial celiac test in 2023, but none showed any deficiencies usually associated with celiac disease. I'll mention the new gluten challenge guidelines to my doctor, perhaps he will ask me to do the test again? And I'll see what he says more generally... Thanks again!
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By captaincrab55 · Posted
Welcome sillyyak52, I'm not sure of your age or if you live with your parents. Is there a nurse in your family or friend of the family that may be able to explain your diagnoses? You can get a second opinion by taking your lab results to another GI Doctor. Good Luck! -
So, you have three symptoms of a gluten-related disorder: weight loss, brain fog and lose stools. Of the three, the lose stools that firm up when you cut back on gluten is the only symptom for which you have reasonable cause to assume is connected to gluten consumption since the other two persist when you cut back on gluten. But since you do not have any formal test results that prove celiac disease, you could just as easily have NCGS (Non Celiac Gluten Sensitivity). In fact, what testing you have had done indicates you do not have celiac disease. NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten is the antidote for both. What muddies this whole question are two things: 1. Lack of official diagnostic data that indicates celiac disease. 2. Your persistence in consuming gluten, even though in smaller amounts. Your anxiety over the insomnia seems to outweigh your anxiety over the weight loss which prevents you from truly testing out the gluten free diet. What other medical testing have you had done recently? I think something else is going on besides a gluten disorder. Have you had a recent CBC (Complete Blood Count) and a recent CMP (Complete Metabolic Panel)? You say you don't believe you have any vitamin and mineral deficiencies but have you actually been tested for any. I certainly would be concerned with that if I was losing weight like you are despite consuming the high amount of calories you are.
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Welcome to the forum, @AndiOgris! Recently upgraded guidelines for the "gluten challenge" recommend the daily consumption of at least 10g of gluten for at least 2 weeks to the day of testing to ensure valid testing, either for the antibody testing or the endoscopy/biopsy. 10g of gluten is roughly the amount found in 4-6 slices of wheat bread. So, there is a question in my mind as to whether or not your gluten consumption was intense enough to ensure valid testing the second time around. And was the tTG-IGA the only antibody test that was run? That is far from a comprehensive celiac panel. Concerning your negative biopsy, there is the possibility of patchy damage that was missed due to inadequate sampling as you alluded to. There is also the possibility that the onset of your celiac disease (if you have it) was so new that there had not yet been time to accumulate damage to the small bowel lining. Your total lack of symptoms at the time of diagnosis would seem to support this idea. Having said all that, and this is my informal observation from reading many, many posts like yours over the years, I wonder if you are on the cusp of celiac disease, crossing back and forth across that line for the time being. My suggestion would be to keep a close eye on this for the time being. Watch for the development of symptoms and request a more complete celiac panel a year from now. Here is an article that discusses the various antibody tests that can be run for celiac disease. Note: The EMA test is kind of outdated and expensive. It has been replaced by the tTG-IGA which measures the same thing and is less expensive to run.
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