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- Rejoicephd replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease2Struggling to get into a good pattern
Thank you very much @trents! This is super helpful. The only time I wasn’t sick after my diagnosis was when I was ordering and eating certified gluten-free meals from a company. I did that for a few months right after being diagnosed and then I started to try to figure it out how to cool and eat gluten-free meals myself. I think I’m probably getting low lev... -
- trents replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease2Struggling to get into a good pattern
Welcome to the celiac.com, @Rejoicephd! 1. "Gluten Free" does not equate to "contains no gluten". According to FDA advertising regulations, it means it cannot contain more than 20ppm of gluten. This is a good standard for most in the celiac community but not good enough for those on the sensitive end of the spectrum. If you find the "Certified Gluten... -
- Rejoicephd posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease2
Struggling to get into a good pattern
Hi everyone! I was diagnosed with celiac a year ago (they confirmed it on endoscopy following a positive TTG antibody and positive genetic test). I thought the gluten free diet thing wasn’t going to be that hard of an adjustment, but man was I wrong. I’m a year in and still having issues in terms of accidentally glutening myself and getting super sick (I’... -
- trents commented on Scott Adams's article in Diagnosis, Testing & Treatment5
New Blood-based T Cell Celiac Disease Diagnostic Test Eliminates Prolonged Gluten Challenge (+Video)
@miguel54b, I hear you. Some medical professionals have this attitude that gluten disorders are the latest "fad" disease and are very dismissive. Many of us have suffered much and suffered much bodily damage by having our complaints dismissed as hypochondria or misdiagnosed as some other medical problem. But let me offer a little education about gluten disorders...- celiac disease
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- miguel54b commented on Scott Adams's article in Diagnosis, Testing & Treatment5New Blood-based T Cell Celiac Disease Diagnostic Test Eliminates Prolonged Gluten Challenge (+Video)
My first blood test came negatively, a stool test positive, a Gliadin test positive, A gene test determined that a have two genes that code for gluten sensitivity. I had to do all that to get some people to believe me, still some people don’t acknowledge that I have a gluten problem. I welcome this new test.- celiac disease
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By Rejoicephd · Posted
Thank you very much @trents! This is super helpful. The only time I wasn’t sick after my diagnosis was when I was ordering and eating certified gluten-free meals from a company. I did that for a few months right after being diagnosed and then I started to try to figure it out how to cool and eat gluten-free meals myself. I think I’m probably getting low levels of gluten exposure and maybe that’s what’s making me ill. Possibly other things also not helping the situation (like dairy). Anyway this gives me something to focus on to see if it helps. So thanks for that! -
Welcome to the celiac.com, @Rejoicephd! 1. "Gluten Free" does not equate to "contains no gluten". According to FDA advertising regulations, it means it cannot contain more than 20ppm of gluten. This is a good standard for most in the celiac community but not good enough for those on the sensitive end of the spectrum. If you find the "Certified Gluten Free" symbol on a package that is even better, indicating that there is no more than 10ppm of gluten. 2. When you are choosing "gluten free" items from a restaurant, realize that it only means gluten is not an intentional ingredient. It does not rule out CC (Cross Contamination) caused by those cooking and preparing the food back in the kitchen who may be cooking it on the same surfaces or in the same pots/pans as they are gluten containing food items and handling it with the same utensils they are handling gluten-containing food. 3. About 8% of celiacs react to the protein avenin in oats as they do the protein gluten in wheat/barley/rye. In addition, some cultivars of oats actually contain the protein gluten. Many celiacs also react to the protein casein in dairy products as they do gluten or they are lactose intolerant. Eggs, soy and corn are also common "cross reactors" in the celiac community but oats and dairy are the most common.
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By Rejoicephd · Posted
Hi everyone! I was diagnosed with celiac a year ago (they confirmed it on endoscopy following a positive TTG antibody and positive genetic test). I thought the gluten free diet thing wasn’t going to be that hard of an adjustment, but man was I wrong. I’m a year in and still having issues in terms of accidentally glutening myself and getting super sick (I’m starting to think I need to just bring my own food everywhere I go). And also even when I am eating foods that say they are gluten free, I’m still dealing with an upset stomach often. My GI doc said I should avoid dairy as well, and the internal medicine doc said my gut microbiome might be messed up from all of this. I’m just looking for some answers/ideas/tips on what additional things I can do to feel better. Do you all do avoid additional categories of foods beyond just gluten to help alleviate symptoms? Thanks! -
If your total IGA is low then the values for the other IGA tests cannot be trusted. They will be depressed. Celiacs who have the DQ2 gene typically are on the more sensitive side as opposed to those who only have the DQ8. But keep in mind that having either or both of those genes does not equate to having celiac disease as 40% of the general population have one or the other and only about 1% of the general population develops active celiac disease. Genetic typing can be used for ruling it out, however. Because of the low total IGA, symptoms and the possession of the DQ2 gene, my suggestion would be for you to go seriously gluten free for a few months and see if your symptoms improve. It may be the only way you can ascertain if you are gluten intolerant because of the low total IGA.
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Ah ok, I just saw didn’t even post the DGP IgA at all. 😫 I started with itching and hives Jan 2024, been taking a ton of meds and on Xolair and even that is not providing total relief. The other primary symptoms: intermittent but worsening abdominal pain, diarrhea and bloating. This summer I am just exhausted. I uploaded my 23andMe data to genetic lifehacks and discovered quite a few variations, including DQ2, MTHFR, VDR and I have always had very low ferritin, vitamin D and B12. I still think that mast cell disease makes the most sense, but latest labs show I am barely in range for thiamine, zinc and vitamin A, so the GI stuff feels more important to figure out than the hives right now. I did SIBO testing this morning. TTG IGA <2 0-3 is negative TTG IGG 3 0-5 is neg DGP IGA 21 20-30 is weak positive DGP IGG 4 0-19 is negative Although total IGA is not resulted, there is a footnote stating it was low and the reason they ran IGG.
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