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- RMJ replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease15Refractory Celiac disease - what to do
Sometimes it can take a long time for antibodies to get into the normal range. My TTG IgA was normal after a year, but just barely and it bounced in and out of normal range for a few years. It took five years to get the DGP IgA normal. You may want to reevaluate your gluten free diet. I started by not eating anything with gluten ingredients. All antibodies... -
- knitty kitty replied to SMK7's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms19High IGA antigliadin, everything else normal, what does this mean?
@SMK7, Have you had a genetic test to see if you carry any of the known genes required for Celiac Disease to develop? If you don't carry any known Celiac genes, then you would have Non-Celiac Gluten Sensitivity. Having the celiac disease genes doesn't mean one will definitely develop celiac disease. The genes need repeated exposure to... -
- Scott Adams replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease15Refractory Celiac disease - what to do
Your doctor is most likely correct here, and if you had high tTg-IGA and villous atrophy you likely have celiac disease and need to be gluten-free. If regular small amounts of gluten get in your diet, it will prevent recovery. Eating out in restaurants is the primary source of such contamination. -
- Scott Adams replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease30
Supplements for those Diagnosed with Celiac Disease
Mostly trial and error and noticing the effects of the supplements over time. It's important to look at the bottom of my original post in this thread to see nutrients that can be toxic in higher does, especially over long periods of time. -
- Scott Adams replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease15
Refractory Celiac disease - what to do
As @trents mentioned, removing gluten if you have celiac disease would be key to villi recovery, and if you still are having issues trying to identify other triggers would be the next step, even though the additional intolerances will not likely contribute to villi recovery. This study indicates that a majority of celiacs don't recover until ...
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Sometimes it can take a long time for antibodies to get into the normal range. My TTG IgA was normal after a year, but just barely and it bounced in and out of normal range for a few years. It took five years to get the DGP IgA normal. You may want to reevaluate your gluten free diet. I started by not eating anything with gluten ingredients. All antibodies decreased but DGP IgA still elevated. Then if I ate processed foods I only ate those labeled gluten free. Still not enough. Now I only eat processed foods if certified gluten free or labeled gluten free and from a company with a good reputation in the celiac world. To answer another one of your questions, the incidence of intestinal lymphoma in general is very, very low. Yes it is increased in those with celiac disease , but even with the increase incidence is still very, very low.
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By knitty kitty · Posted
@SMK7, Have you had a genetic test to see if you carry any of the known genes required for Celiac Disease to develop? If you don't carry any known Celiac genes, then you would have Non-Celiac Gluten Sensitivity. Having the celiac disease genes doesn't mean one will definitely develop celiac disease. The genes need repeated exposure to gluten and an environmental trigger to turn on and start the development of celiac disease. However, NCGS is considered a precursor of Celiac Disease in those with the genetic predisposition. While antibodies, like DGP IgA and DGP IgG antibodies, may be present, NCGS does not involve tTg IgA antibodies. The tTg IgA antibodies are a definitive marker for Celiac Disease. The tTg IgA antibodies are the antibodies that attack and damage structural components in cell membranes. This damage results in flattened villa in the small intestines, the hallmark of Celiac Disease. The absence of a strong tTg IgA response in young adults and children may be due to an immature immune system. The antibodies that are present in NCGS do cause inflammation and intestinal permeability. A constant state of inflammation raises homocysteine levels which lead to cardiovascular and kidney problems. Intestinal permeability leads to increased food sensitivity, metabolic disorders, other autoimmune diseases, and neurodegenerative diseases. You would be wise to have a genetic test and go completely gluten free. If you don't have celiac disease genes and are NCGS, going completely gluten free will lower inflammation and intestinal permeability, thus lowering risk for further health problems. If you do have celiac disease genes, going completely gluten free now could prevent or postpone celiac disease from developing in future. celiac disease is triggered by repeated exposure to gluten and and environmental stressor like infection or injury. Chronic gastritis can lead to nutritional deficiencies including deficiencies in B12, iron, thiamine, and Vitamin D which can result in anemia, osteoporosis and infertility. Chronic gastritis and its accompanying inflammation can lead to further nutrient malabsorption. You might want to discuss with your doctor and nutritionist the benefits of a genetic test and a completely gluten free diet. References: https://pmc.ncbi.nlm.nih.gov/articles/PMC10381837/#:~:text=The presence of TTG2 antibodies,in celiac disease patients [24]. https://pubmed.ncbi.nlm.nih.gov/38078323/#:~:text=Titers of antibodies to DGPs,celiac disease in mass screening studies. -
By Scott Adams · Posted
Your doctor is most likely correct here, and if you had high tTg-IGA and villous atrophy you likely have celiac disease and need to be gluten-free. If regular small amounts of gluten get in your diet, it will prevent recovery. Eating out in restaurants is the primary source of such contamination. -
By Scott Adams · Posted
Mostly trial and error and noticing the effects of the supplements over time. It's important to look at the bottom of my original post in this thread to see nutrients that can be toxic in higher does, especially over long periods of time. -
By Scott Adams · Posted
As @trents mentioned, removing gluten if you have celiac disease would be key to villi recovery, and if you still are having issues trying to identify other triggers would be the next step, even though the additional intolerances will not likely contribute to villi recovery. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:
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