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Supplements for those Diagnosed with Celiac Disease
Barbra S and 4 others reacted to Scott Adams for a topic
I am often asked about which supplements I take, so I'm sharing it here. I think you'll find a big variation of what supplements different people on this forum take, but here is a breakdown of the many I take. This regimen has worked well for me, but it has take many years for me to add and remove different ones. Also, all of this list may not apply...5 points -
FDA's Inaction on Gluten Labeling Fails to Protect Celiac Patients (+Video)
KelleyJo and 2 others reacted to Helen Vajk for an article
Amen. Even worse than the food labeling is the near-complete absence of medication labeling.3 points -
Family education
knitty kitty and 2 others reacted to cristiana for a topic
@sillyyak52 Welcome to the forum! I'm just about to go away for a couple of days but read this and just had to reply. I am so sorry for what you are going through... it is really tough. Perhaps finding a short video online which explains the seriousness of celiac disease might help. Just sit your family down and say, "Please just watch this...3 points -
Being a burden to family/friends
Awol cast iron stomach and 2 others reacted to dublin555 for a topic
I totally agree, it’s so much more than just the physical struggle that occurs, there is the emotional struggle that goes along with it. It’s almost like you’re always navigating people who are uncomfortable with your needs and that pressure really wears you down. The fact is, the one that really did care will understand. This has nothing to do with you b...3 points -
Is this safe for someone with celiac disease?
knitty kitty and 2 others reacted to RMJ for a topic
I am also asymptomatic. Not everyone with celiac disease reacts the same way to the same amount of gluten, so it is impossible to say for you whether or not such small traces of gluten would be safe. I am tested for tTG-IgA and DGP IgA and IgG annually. My DGP IgA went up once when I was using a certain brand of supposedly gluten free flour, it went...3 points -
Hi @DayaInTheSun Welcome to the forum! I've been a Mod on this forum for some years now and your feelings are shared by many of us. I am not sure how long you have been diagnosed, but in my own case I do find that time has helped. It was pretty exhausting at first trying to explain to friends but they now have a pretty good grasp of coeliac...3 points
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Two things: 1. If you are using drops 3x a day you should be sure to use preservative free. The preservatives themselves can cause irritation. 2. If the problem does not resolve, you may want to have a rheumatologist check for Sjogren's. There appears to be a relationship between celiac and Sjogren's.3 points
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Vomiting - celiac or constipation
Scott Adams and 2 others reacted to sh00148 for a topic
Morning All, Just an update, I got an urgent appointment through my contact with PALS. The doctor confirmed her levels were the highest possible so she likely had higher levels of inflammation. Since the appointment, they ordered a second set of bloods, but as many of you confirmed he felt there was no doubt she was coeliac so asked us to start...3 points -
Yes, get serum antibody testing done for celiac disease. You could also have NCGS (Non Celiac Gluten Sensitivity). 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...3 points
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Celiac Maybe a Possibility?
Aleda D and 2 others reacted to Wheatwacked for a topic
It seems you have proven that you cannot eat gluten. You've done what your doctors have not been able to do in 40 years. That's your low vitamin D, a common symptom with Celiac Disease. Zinc is also a common defiency. Its an antiviral. that's why zinc gluconate lozenges work against airborne viruses. Vitamin D and the Immune System+ ...3 points -
Lymph nodes in neck + thyroid issues
knitty kitty and 2 others reacted to RMJ for a topic
I’ve had on and off swelling of a salivary gland below my jaw - sialoadenitis. It was very visible when it swelled though.3 points -
Premature Graying and Celiac Disease: A Case Study and Implications for Diagnosis
Wheatwacked and 2 others reacted to AnnaNZ for an article
I started greying in my 40s, gave up gluten in September 2023 aged 59, have taken courses of Vitamin D, B complex and zinc and my completely grey hair has started to regenerate dark brown. Real visible proof of malabsorption.3 points -
I need to correct something I wrote earlier this thread. The energy bars from Costco no longer have the Gluten Free certification on their labels. It disappeared sometime this year. The ingredients do not contain wheat, rye or barley but this product is processed in a facility where they also process items with wheat. I assume this is the problem. I...3 points
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Study Shows Protective Potential of Bacteroides Vulgatus Against Celiac Disease
GardeningForHealth and 2 others reacted to Jefferson Adams for an article
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10 years later, my celiac is progressing
GardeningForHealth and 2 others reacted to Scott Adams for a topic
It definitely makes sense to get your vitamin & mineral levels tested before you start supplementing, and unfortunately my doctors never recommended this approach at the time of my diagnosis, nor did they ever recommend any supplementation. Unfortunately this led to many years of dealing with gluten ataxia issues that were mostly only resolved decades...3 points -
Gluten as a Proinflammatory Inducer of Autoimmunity in Everyone
Lucille Cholerton and 2 others reacted to KDrutz for an article
Wondering if they tested both organic and non-organic gluten, and if herbicides or pesticides exacerbated the inflammation response. My personal experience is that I suffered with seasonal allergies and cat allergies for years until I stopped eating gluten (when my daughter was diagnosed with Celiac). After six months or so, all of my allergies were...3 points -
Scott Adams' Story of His Diagnosis of Celiac Disease
J1707 and 2 others reacted to Scott Adams for an article
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I understand the concept of rewarding those companies who are consistently in compliance with GFCO standards and the idea of doing so has merit but it is also true that while the cat is away the mice will play. As others have suggested, perhaps the introduction of unannounced, random drop in testing needs to be added to the mix to keep them on their toes...3 points
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@PosterboyThanks for the article - it definitely helped when I was looking into thiamine and niacin for celiacs. Interesting too is that schizophrenia has been linked with undiagnosed celiacs and in orthomolecular therapy is treated like pellagra with high dose niacin. I have supplemented with both and have benefited from them… they are kind of counterparts i...3 points
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Bakery Accused of Selling Dunkin' Donuts as Homemade Vegan, Gluten-Free Treats
Hildawg037 and 2 others reacted to Helen Vajk for an article
Hard to believe, but unfortunately seems true. This kind of "mislabeling" is actually bodily assault for celiacs, consciously done for profit.3 points -
Sick as a dog 6 weeks post-diagnosis
Nicole Maree and 2 others reacted to knitty kitty for a topic
@Blue Roan, How are you doing? I checked on the ingredients of those Aussie Bites. Organic Rolled Oats, Organic Oat Flour, Organic Unsalted Butter, Organic Expeller Pressed Canola Oil, Organic Dried Apricots, Organic Sugar, Organic Cane and Invert Sugar, Organic Raisins, Organic Flax Seeds, Organic Honey, Organic Shredded Coconut, Organic Quinoa...3 points -
How Long Do Celiac Patients Live?
Scott Adams and 2 others reacted to Maggieinsc for a topic
Have to say I was just diagnosed at 73 almost 74 last fall after complaining to doctors for years about my vicious heart burn. They told me to take antiacid. One head pf the department at the Medical College of Georgia said the same after he gave me an endoscope. The allergist also a department head - rheumatology - said u r allergic to wheat but go ahead...3 points -
Study Looks at Iron Levels and Celiac Disease Development
Wheatwacked and 2 others reacted to Maria Deal for an article
I find this interesting. I had horrible monthly periods & anemia, then at age 19 was told my Endometriosis was so bad I should probably have a complete hysterectomy because I probably would not have children & yes my life was severely altered. Back then, 1982, there was no “autoimmune” connection. I never even heard of Celiac then, and yes eve...3 points -
Test Result Interpretation
Scott Adams and 2 others reacted to Zoe246 for a topic
These comments are all really helpful, thankyou, it’s much appreciated3 points -
How to Navigate Gluten-Free Dining at Popular Restaurant Chains
LovintheGFlife and one other reacted to Scott Adams for an article
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Being a burden to family/friends
knitty kitty and one other reacted to cristiana for a topic
I must admit I've been on both sides. Before my diagnosis, and in my ignorance, I thought all the special diets we see around us today were unnecessary and people were making a big fuss over nothing. There is a shop in the small town where I live that sells organic and gluten free food and I used to see people walking in and buying things and thought they...2 points -
High dosage of B12 gave me life.
knitty kitty and one other reacted to trents for a topic
I think you would do well to take a high potency B-complex such that you get more balanced dosage across the spectrum of B vitamins. They work in concert.2 points -
Coping with celiac
Scott Adams and one other reacted to Mari for a topic
mcg Vit. B12Hi dlaino - You mentioned that you are now feeling sick all the time. If this is making you miserable you might want to go to your health provider, describe what you are feeling and your symptoms so that theySome of the people here can give you useful advice about taking supp;ements and the amounts you could take to improve your overall health...2 points -
Welcome to the forum, @Kwinkle! Realize first that the B vitamins are water soluble which means excess is excreted in our urine and does not build up in our tissues like fat soluble vitamins do. So, there is little risk of toxicity with large doses of the B's. Second, if you start with smaller doses they may not be large enough to be therapeutic...2 points
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I would not be comfortable with just wiping down the rack after a gluten-containing food was cooked on it. When I cook pizza in the oven, my gluten-free pizza goes on the top rack - nothing else is ever placed directly on that top rack, gluten or not. Contact with minute traces of gluten cause me symptoms within a few hours. If I heat a gluten-free roll...2 points
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Welcome to the forum, @Travel Celiac! The high total IGA does not indicate that your celiac disease is actively flaring up. Total IGA is not a test for celiac disease per se but rather is test given to determine if you are IGA deficient, which you are not. IGA deficient people will experience artificially low individual IGA antibody tests such as the...2 points
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I did some reading from the link you posted and will definitely use the information provided to my advantage! I feel very lucky with my current situation, as my family has been very supportive as well as my closer friend-group. I appreciate the welcome and the information!2 points
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Gluten Free Bread
Scott Adams and one other reacted to Lockgirl for a topic
I was in love with BFree Baguettes but recently I found Against the Grain Rosemary Baguettes at my local Natural Grocers. I was not sure at first. At this store, it was in the frozen section. Once I got it home and opened, the bread texture looked a little weird. Then I tasted it...Unbelievable! I used to love real sourdough in the old wheat days, and I have...2 points -
Premature Graying and Celiac Disease: A Case Study and Implications for Diagnosis
knitty kitty and one other reacted to Beverage for an article
I started going gray at 23, a very white streak that looked cool at first but quickly expanded. I did not have typical intestinal symptoms, lots of extreme allergies and got a lot of colds. I wasn't diagnosed with Celiacs until age 59. I realized the connection immediately. Now I'm 68 and normal greying for my age.2 points -
Blunted villi almost 4 year after diagnosis
Aleda D and one other reacted to Wheatwacked for a topic
That's the vitamin D working for you. Pipingrock.com has Liquid Vitamin D3, 5000 IU, $3.50 118 Servings Per Container. double the dose for 10,000 IU. Between malabsorption and avoiding foods and losing the fortififications required in gluten foods (what? our american diet is deficient? There is a reason governments require fortification. Gluten...2 points -
Different gluten sources causing different symptoms?
DebJ14 and one other reacted to Scott Adams for a topic
While I understand wanting a formal diagnosis, it sounds like you will likely remain gluten-free either way, even if you should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal N...2 points -
Gluten as a Proinflammatory Inducer of Autoimmunity in Everyone
Slimkitten and one other reacted to Russ H for an article
It would be interesting to look at populations that have never been exposed to gluten.2 points -
Family Seeks Policy Change After Alleged Discrimination at Provo, Utah Water Park
Anna M and one other reacted to GreenEyedMama for an article
This happened to me at Michigan Adventure last summer. I called ahead and spoke with guest services to see what their policy was for me to bring food in for myself as a Celiac. Upon arrival, I stopped as directed to get my cooler tagged for the day, a worker then came over and started to separate my food into a small personal child size lunch box cooler....2 points -
Welcome to the forum, @lorishaw! One factor you are likely not aware of is that your low Immunoglobulin A (IgA) (what we typically refer to as "total IGA") would cause the TTG-IGA test score to be artificially low. Low total IGA (or IGA deficiency) suppresses individual IGA test scores. It is not itself an antibody test for celiac disease but if it is...2 points
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Anosmia - no sense of smell?
Scott Adams and one other reacted to Beverage for a topic
I lost my sense of smell years ago, it was what made me try a naturopathic doctor in 2015, and he diagnosed me with Celiacs. It's come back from time to time, some supplements seemed to help, like thiamine and K2, but then it faded away again. Since it came back occasionally, it gave me hope that it wasn't nerve damage. Weirdly, it came back like gang busters...2 points -
I thought they did but after questioning them apparently not. It’s left up to the manufacturers and they arent monitored unless there is a complaint. I’ve had things labeled gluten free and when I questioned the company they said the imported ingredients aren’t tested. Stay away from the gluten free Idahoan Scalloped Potatoes. 😂2 points
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@gameboy68 First, it looks like you do indeed have celiac disease, and a follow up with a gastroenterologist would seem to be in order. Many on these boards will draw your attention to the B12 and D3 levels. While those are important (you may have macrocytic anemia, often caused by low B12), what strikes me is your low sodium level. Your...2 points
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That blows my mind. But I also have a friend who I told about the cooking situation, and he said he wouldn’t be able to date someone who he’d have to change so much of his style for. Not starting a relationship makes a little more sense than ending one because of it. But neither actually makes sense to me. If you care about someone, you makes those adjustments, as...2 points
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1 Week Gluten-Free And I Have The Worst Gas Please Help!
knitty kitty and one other reacted to RicePasta for a topic
I was experiencing similar symptoms after going gluten free and had a hard time pin pointing the issue. After a lot of trial and error with foods I singled out a common ingredient in most gluten free baked goods and a variety of other gluten free items. Tapioca, cassava, and arrowroot. I did some research and found out that these foods are related to the...2 points -
Sorry it took so long to reply, thank you for your insights, I will increase my vitamin D. I'm a soCal girl, born and raised in HB Cali, you know I love my sunshine. I am in Palm Springs are, I get plenty of sun, with sunscreen of course. Thank you again.2 points
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I am not sure how to feel...
PA Painter and one other reacted to trents for a topic
You can purchase wheat free/gluten free cornbread mix (I use one by Krusteaz) but most traditional cornbread mixes do contain wheat flour.2 points -
I am not sure how to feel...
knitty kitty and one other reacted to Mari for a topic
Hi Shortsgirl - = So sorry that your parents are not accepting of your need to stay Gluten Free. You need to get out of this game they are using to convince themselves that you are a person that does not have this problem. Kitty knitty wrote that they are in denial. That is often a word associated with addiction. It is well known that wheat and or gluten...2 points -
I wonder if your request actually went to the doctor or was just denied by other staff. Perhaps some references to scientific articles would help to make your point: Gluten induced cognitive impairment (brain fog) in coeliac disease Cognitive impairment in celiac disease… Celiac Disease and Neurological Manifestations: From Gluten t...2 points
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By Scott Adams · Posted
The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS. Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. -
By Scott Adams · Posted
Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios: 1. Non-Celiac Gluten Sensitivity (NCGS) - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies. - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839) 2. Autoimmune Diseases - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity. - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3) 3. Chronic Liver Disease - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation. - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031) 4. Inflammatory Bowel Disease (IBD) - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common. - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020) 5. Infections and Parasites - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage. - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010) 6. Cardiac Conditions - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability. - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019) Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that! -
I called zero water and they state their filters do not contain gluten or gluten containing ingredients.
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I agree. Doesn't look like you have celiac disease. Your elevated DGP-IGG must be due to something else. And it was within normal at that after your gluten challenge so it is erratic and doesn't seem to be tied to gluten consumption.
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By Jack Common · Posted
Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results. These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal) During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal) To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal) Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
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