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Hey @Morgan Tiernan, Sounds just like my experience. I was diagnosed with dermatitis herpetiformis over 10 years ago. It appeared suddenly as a very itchy rash which looked like Eczema. When a steroid cream didn't clear it up, my Dermatologist (who had come across it before) suspected dermatitis herpetiformis and performed a skin biopsy which came back...2 points
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Another factor revealed in your test results is that you are IGA deficient. Look at the line: Immunoglobulin A, Qn, Serum 35 (L) Reference range: 87 - 352 We also call that "total IGA". IGA deficiency results on in artificially low scores in the individual IGA celiac antibody test scores. In other words, the test score for the tTG-IGA would...2 points
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Thank you so much for the detailed reply! I was just eating my normal diet so wasn't going out of my way to eat gluten. The week before my blood test I actually had a stomach virus so I wasn't eating much of anything so I do wonder if that contributed at all. Before the biopsy I was just eating my normal amount of gluten, I would say two slices of bread per...2 points
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How to navigate living with dermatitis herpetiformis
Morgan Tiernan and one other reacted to trents for a topic
Welcome to the forum, @Morgan Tiernan! I find it outrageous that your physicians refused to test you for celiac disease despite what were obviously outbreaks of dermatitis herpetiformis. Every physician should know that dermatitis herpetiformis is a classic symptom of celiac disease! In fact, celiac disease is the only known cause for dermatitis herpetiformis...2 points -
Not All Corn Grits are Safe
Scott Adams and one other reacted to ShariW for a topic
I don't react to corn in general. I think it was cross-contact in manufacturing that got me. But if I do find that I have problems with gluten-free grits, I will see corn elimination in my diet will solve the issues.2 points -
Family education
knitty kitty and one other reacted to trents for a topic
Although I disagree with interjecting the element of dermatitis herpetiformis since this is not a real issue for the OP, I think Rogo72 gives good advice about how to navigate social situations as a celiac when finding yourself in unsympathetic company. It requires developing somewhat of a tuff skin and holding your ground in order to be safe. The psychology...2 points -
Another strange failure of the FDA just happened to me. Like many, if I DO ingest gluten I experience massive projectile vomiting. This can be life threatening when it messes with my insulin/food balance. So my doctor has prescribed for years two anti nausea drugs. I don't, thank goodness, have to use them often. This time, my doctor apparently, when...2 points
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FDA's Inaction on Gluten Labeling Fails to Protect Celiac Patients (+Video)
KelleyJo and one other reacted to Helen Vajk for an article
Amen. Even worse than the food labeling is the near-complete absence of medication labeling.2 points -
Matthew 18:21-352 points
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Test result insight
Scott Adams reacted to disneyfamilyfive for a topic
Thank you! This will be so helpful. It’s overwhelming for sure!1 point -
Test result insight
Scott Adams reacted to disneyfamilyfive for a topic
Good morning, I thought I’d quickly update this post. A week or so after my test results were posted, my doctor’s nurse called to say 2 of 3 blood tests showed elevated numbers and referred to GI for further evaluation. It took about 3 -4 weeks to get into a GI, it was over the holidays too, so I’m sure that pushed things out a bit. Met with the GI wh...1 point -
DH and swollen lymph nodes
Scott Adams reacted to Morgan Tiernan for a topic
A little late to the party in terms of seeing this and responding to it, so apologies! But I wanted to responds as this sounds exactly like my experience. I had covid, followed by shingles, followed by strep… that unlucky bout of infections is what lead me here with dermatitis herpetiformis. I was also self diagnosed in the beginning and turns out I was a...1 point -
You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but...1 point
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Weak positive blood test and marsh type 1
knitty kitty reacted to Philly224 for a topic
Thanks again everyone! Twenty mins on here way more helpful than both Dr's combined 😅1 point -
Weak positive blood test and marsh type 1
knitty kitty reacted to trents for a topic
As Scott said, if you go on a gluten free diet ahead of testing you can expect the test results to be negative. If you remove gluten from your diet, the inflammation in the lining of the small bowel will subside, antibody levels (what the blood tests are checking for) will drop and the mucosal lining will experience healing such that a biopsy will be normal...1 point -
Weak positive blood test and marsh type 1
Philly224 reacted to Scott Adams for a topic
This article has some detailed information on how to be 100% gluten-free, so it may be helpful:1 point -
Weak positive blood test and marsh type 1
Scott Adams reacted to Philly224 for a topic
Thank you! Kind of starting to accept that, sucks but id rather switch to a gluten-free diet now than regret it later. I'll probably just listen to this Dr for now and go on a gluten-free diet, I have an appointment in May with a Dr that specializes in celiac so im hoping I will have a better experience there.1 point -
Weak positive blood test and marsh type 1
cristiana reacted to Scott Adams for a topic
From the article regarding the tTG-IgA test: So the most likely explanation of your positive tTG-IgA test would be celiac disease.1 point -
Weak positive blood test and marsh type 1
cristiana reacted to Scott Adams for a topic
There is no such thing a "mild celiac disease," and your blood test results and biopsy results indicate that you indeed likely have an issues with gluten. It also would make no sense for you to go gluten-free for two months and get the blood test done again--I can predict the results for you--negative. The real question here is how much gluten were...1 point -
Enegy level extremely low
Scott Adams reacted to DebJ14 for a topic
My iron was not low, but my B-12 levels were extremely low. I had zero energy. I had micronutrient testing and I was put on a boatload of supplements. Everything recovered pretty quickly except for my D, B12 and antioxidant levels. The doctor ordered genetic testing and found that I have a genetic inability to process all three. Thus, my dosages were...1 point -
How to navigate living with dermatitis herpetiformis
Morgan Tiernan reacted to Scott Adams for a topic
If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:1 point -
Can food allergies like milk and soy flatten villi?
Scott Adams reacted to Matt13 for a topic
Hi knitty kitty, Scott and all, Thanks for kind words and asking!I will def. talk about histamine intolerance on my next visit to gastro doc. My doc.gastro says that lactose or casein is very unlikely to create marsh 3b histology like gluten in adults in intestines. (that was previous question for Scott) Regarding my last EGD the villy was OK so...1 point -
I’m so confused…
Scott Adams reacted to Kwinkle for a topic
Thank you. I already cut out dairy and eggs because I found out I was having a problem with them. To be honest I’m just getting worn out 😂1 point -
Can food allergies like milk and soy flatten villi?
Scott Adams reacted to Deanne jones for a topic
Hi Kitty, thank you for your e mail, I have seen a nutritionist who seemed to be happy with the food diary I had been keeping and nothing was mentioned about extra vitamins, and I’m still using milk etc . The steroids seem to be working and everything is functioning as it should however, the course of tablets finish at the end of February and I...1 point -
I’m so confused…
Scott Adams reacted to Celiacandme for a topic
You might also be sensitive to other things while you are healing. Dairy, for example. It won't harm you from a celiac standpoint but is inflammatory and could be bothering you. Have you been keeping a food & symptom journal? Might be worth it for a week to see if you notice something you are eating prior to the times you feel your worst. I hope you start...1 point -
I’m so confused…
Scott Adams reacted to Kwinkle for a topic
Thank you - I am fighting the good fight. I feel like when I see improvement then I go back downhill again. What I do know is if I can’t get past this fatigue and loss of appetite I’m heading for problems.1 point -
I never buy any nuts from a facility that processes wheat. It’s not worth the risk. Surprisingly, Trader Joe’s nuts do not come a factory that processes wheat, and I do not react to them. I am sensitive to gluten.1 point
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I hope you don't have to wait too long until her endoscopy. Is she able to bring her lunch with her in the meantime?1 point
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Perimenopause/menopause
Scott Adams reacted to Celiacandme for a topic
Thanks for taking the time to respond, Scott.1 point -
Not All Corn Grits are Safe
ShariW reacted to knitty kitty for a topic
@ShariW, Some of us react to corn the same as we react to gluten because maize and gluten share some similar segments which trigger the Celiac autoimmune response. Maize Prolamins Could Induce a Gluten-Like Cellular Immune Response in Some Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC3820067/#:~:text=The current treatment...1 point -
New Guy Here...
knitty kitty reacted to trents for a topic
I have concern as well about the long term use of any PPI. I understand it was given to you to address the GERD but PPIs were never intended to be long term solutions. Yet, docs prescribe them like candy and never monitor for the ongoing need. They just leave people on them indefinitely which has long term negative health consequences from raising gut PH...1 point -
Top Brands of Gluten-Free Canned Chili
Scott Adams reacted to trents for an article
My wife just brought home some Wendy's canned chili from Costco. I've eaten it at Wendy's and it's on their menu there as gluten free. However, it's not stated as such on the can. On the other hand, wheat is not in the allergen list on the can.1 point -
Top Brands of Gluten-Free Canned Chili
Scott Adams reacted to Roadqueen44 for an article
Wendy’s canned chili is gluten free. My husband just brought home canned skyline original chili. Is it gluten free? It’s not stated on the can and does have dried yeast, spices and natural flavors.1 point -
Biopsy results - second opinion?
knitty kitty reacted to ellyelly for a topic
Wow - this is all so helpful KnittyKitty. I have just checked and they have done a total iga test thankfully! Will definitely share the results. How interesting about the impact of iron on antibodies. I had an iron infusion about 1.5 months prior to the endoscopy, but haven’t started supplementing again (awaiting updated tests). I had planned to see a...1 point -
Cycle of dermatitis herpetiformis
Scott Adams reacted to RonMc for a topic
I use Dapsone for my dermatitis herpetiformis. Was not an issue in the beginning of diagnosis. Once I did the covid vaccine it changed and now I cannot stop using the medicine for more than 24 hours or it flares up with a vengeance. Then it takes just over two weeks for the med to get it back under control. My dermatologist was able to identify and treat...1 point -
Biopsy results - second opinion?
knitty kitty reacted to ellyelly for a topic
Thanks so much for the link and for your thoughts! I have been on a gluten - containing diet and ramped up my intake in the couple of weeks leading up to the endoscopy, so I’m hopeful that the biopsy is painting an accurate picture. I don’t quite understand what else might be causing the lymphocytosis and the inflammatory cells/ clusters of pla...1 point -
OTC pain reliever that are gluten-free and corn free??
knitty kitty reacted to trsprecker for a topic
I definitely try to get those in my diet. There is most likely a genetic component to the issues. Thank you so much for the advice!!1 point -
Family education
knitty kitty reacted to Rogol72 for a topic
@sillyyak52, If it makes you feel any better, I have a sibling who thinks the dinner table (at fine dining restaurants, and less formal pub grub settings etc.) is a personal buffet table and dips into the food of whoever is sitting beside or opposite to them just to get a taste (no plate is safe!) ... never asks for permission ... and has no consideration...1 point -
Navigating Low-Gluten Hosts for Catholics with Celiac Disease (+Video)
LovintheGFlife reacted to Scott Adams for an article
Celiac.com 01/08/2025 - For Catholics with celiac disease, safely partaking in Holy Communion can be a deeply personal and complex issue. The unique challenge lies in balancing religious practices with medical requirements. Here, we explore...1 point -
Family education
Rogol72 reacted to knitty kitty for a topic
@sillyyak52, Count another one in the same boat! My family has always been in denial. They said my tummy aches were a ploy to miss school. My parents passed from health problems associated with uncontrolled Celiac Disease (Abdominal Aortic Aneurysm and Glioblastoma brain tumor). My sister still has her head buried in the sand. I agree with...1 point -
Can food allergies like milk and soy flatten villi?
Scott Adams reacted to Lotte18 for a topic
Hi Knitty Kitty, Thanks for sending all of these articles. Some of them are too complex for me to parse. That said, I had extensive blood tests done when the ataxia started. I was a little low on Vit. D. My doc thought I might be low on Vit. K. But no. K levels were completely normal as were all of my B Vits. levels. I take a D supplement but even...1 point -
Being a burden to family/friends
knitty kitty 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...1 point -
Being a burden to family/friends
knitty kitty reacted to CatS for a topic
I understand your frustration about socializing while having celiac disease. I also have allergies to nuts, dairy, all forms of gluten including oats, strawberries and MSG. I get anxiety while grocery shopping and really take my time to read all labels. I always carry a magnifying glass with me wherever I go to read labels. Many products are labelled Gluten...1 point -
Thank you for this! "Medical" advice, and I use the term loosely, is so rampant and so unproven nowadays (I even have relatives that fall down these rabbit holes and are shocked I don't follow.), so I am skeptical of everything. I appreciate the confirmation of my suspicions that this was more hearsay. Onward with my rice and corn. lol1 point
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Rice, corn, and other gluten-free grains.
ShariW reacted to Scott Adams for a topic
Your approach is spot-on—trusting reliable sources like Mayo Clinic and sticking to a gluten-free diet that works for you is the best way to navigate all the noise out there. The claim that rice and corn contain forms of gluten harmful to celiacs is indeed a misconception. While these grains do contain proteins that may technically be referred to as "glutens" ...1 point -
Is this safe for someone with celiac disease?
Dora77 reacted to Scott Adams for a topic
A dedicated rack is a great idea if everyone in the house understands and supports the idea, and just to clarify, I didn't recommend just wiping the rack down, but washing it well in soap and hot water.1 point -
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...1 point
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Is this safe for someone with celiac disease?
Dora77 reacted to Scott Adams for a topic
Scrubbing with soap and water well should be enough to clean a pan so that it is safe for those with celiac disease. Different celiacs will react to different levels of gluten.1 point -
Is this safe for someone with celiac disease?
Dora77 reacted to knitty kitty for a topic
Hello, @Dora77, Pancreatic elastase is a digestive enzyme that requires Thiamine Vitamin B 1 to be produced. Thiamine is needed to make insulin, too. Thiamine, Niacin B 3, and Pyridoxine B6 are needed to make digestive enzymes and turn carbohydrates, fats and proteins into energy for the body, and for repair and healing of the body. The Gluten free...1 point -
Psychiatric and Neurological Manifestations of Celiac Disease in Adults
Scott Adams reacted to Franny f for an article
For the person who thinks celiac disease is a joke. I hope he never has to experience the fear of getting stomach and head issues I’ve been dealing with for years. Most of the time I eat mindfully of gluten but through the holidays I let it go just a little bit and boy did I suffer. Still am. Starting to get a little better but what a wake up call. I’v...1 point
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I’m reading that some sites list a high Immunoglobulin A result for my age above 300, another site says above 356, and other sites are saying above 400. I don’t know what to make of this result 🤷♂️
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You got some bum steers my friend. I have little confidence that you can trust your test results as differentiating between NCGS and celiac disease. And I think you would be much more likely to have gotten that note you need if you had been diagnosed with celiac disease. But believe me, I understand the predicament you are in with regard to the risks of repeating the gluten challenge. We have heard this story many times on this forum. People experiment with the gluten free diet before getting an official diagnosis and then cannot tolerate the gluten challenge later on when they seek an official diagnosis.
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For the upper gastrointestinal endoscopy, they said 7 days of gluten. So I did 8...fast food and Krispy Kreme doughnuts. For the earlier blood test, the younger doctor said I didn't have to. My immune system went down, I was in the bathroom a lot, and as my wife said my brain wasn't braining.
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Thanks guys. I just got my results but I don’t know what they mean… celiac disease reflex panel Immunoglobulin A normal range 66-433 my results are a score of 358. Is this normal? I have no idea what to make of it…
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How long was your gluten challenge? I hope it was longer than a week. If not, your testing was likely invalid. Recently upgraded guidelines call for the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat bread) for at least two weeks prior to either the blood antibody test draw or the endoscopy/biopsy. And if you had been gluten free for all those years, you likely had lost any tolerance to gluten you may have had when consuming it regularly. That's probably why it was such a tough sledding experience. Before I was diagnosed, I had very minor GI symptoms. Now, after many years of being gluten free, I get violently ill for hours if I get a good slug of gluten, like when I got my wife's wheat biscuits mixed up with the gluten free ones she made me.
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