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- trents replied to Katiexox's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1Advice please
Can you post what blood tests were done specifically for celiac disease, the results and reference ranges if available? If her gluten intake was reduced prior to the blood draw it certainly could result in false negatives on some tests. There is also the possibility that she has NCGS (Non Celiac Gluten Sensitivity). -
- Russ H replied to AllyJR's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms10Confused about my results
There is a good paper here on causes of seronegative villous blunting. The most common is seronegative coeliac disease. Not All That Flattens Villi Is Celiac Disease: A Review of Enteropathies -
- Katiexox posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1Advice please
Desperately in need of some advice of possible 🫠 (sorry for the long post but I’m one exhausted mama) My daughter is just gone 2 years old, for as long as I can remember she’s had problems with her stomach, she was diagnosed with a Dairy and Soy allergy so has been dairy and soya free since around 7 weeks old. I’ve been begging the doctors to liste... -
- Scott Adams replied to Lotte18's topic in Gluten-Free Foods, Products, Shopping & Medications1New painkiller, Journavx
You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance"... -
- Scott Adams replied to AllyJR's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms10
Confused about my results
Your situation is actually more common than many realize, and while confusing, there are logical explanations for your test results. The key points are that your biopsy showing villous blunting and increased lymphocytes does indicate intestinal damage typically seen in celiac disease, despite your negative blood tests. This phenomenon is known as seronegative...- 1
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Can you post what blood tests were done specifically for celiac disease, the results and reference ranges if available? If her gluten intake was reduced prior to the blood draw it certainly could result in false negatives on some tests. There is also the possibility that she has NCGS (Non Celiac Gluten Sensitivity).
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There is a good paper here on causes of seronegative villous blunting. The most common is seronegative coeliac disease. Not All That Flattens Villi Is Celiac Disease: A Review of Enteropathies
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Desperately in need of some advice of possible 🫠 (sorry for the long post but I’m one exhausted mama) My daughter is just gone 2 years old, for as long as I can remember she’s had problems with her stomach, she was diagnosed with a Dairy and Soy allergy so has been dairy and soya free since around 7 weeks old. I’ve been begging the doctors to listen to me and to look into it, I came across celiac disease a few months ago and pushed for her to be tested. Some of her symptoms are - Extreme stomach pain, she’s never had a night where she isn’t rolling around in her bed screaming in pain (not just a cry, she will be fast asleep and then let out a high pitch scream and start crying) this will go on all night! - Gas, I know gas is normal but she just doesn’t stop all day and night, and it smells so so bad! You can hear her from the other rooms in the house - Bloating - Slow growth and weight gain she’s still in 9-12 size clothes at 28 months - Iron deficiency - Diarrhoea or constipated, or really mushy - Constantly tired - Complains of leg pains and gets cramps - Mouth Ulcers - Gets infections like ear and tonsillitis every few weeks She’s super super fussy with food and just won’t eat! So trying to get gluten into her wasn’t easy as most days she just point blanks refuses She had her blood test done last week and they said it came back clear but was showing she was pretty anemic! We are currently waiting for a referral to see a pedantic doctor and her dietician. Im just completely exhausted, she’s constantly poorly and miserable and I hate seeing her like this and being fobbed of by doctors who just don’t seem to understand that I know my baby and I know something isn’t right! Can the test be unreliable? Any advice welcome🥺
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By Scott Adams · Posted
You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/ When I looked this one up I didn't see any gluten ingredients. -
By Scott Adams · Posted
Your situation is actually more common than many realize, and while confusing, there are logical explanations for your test results. The key points are that your biopsy showing villous blunting and increased lymphocytes does indicate intestinal damage typically seen in celiac disease, despite your negative blood tests. This phenomenon is known as seronegative celiac disease, which affects about 10% of celiac patients. Your partial HLA-DQ2 genetic result doesn't rule out celiac either, as a small percentage of celiac patients don't have the complete genetic markers. The fact that you've responded so dramatically to a gluten-free diet is another strong indicator that this is likely celiac disease rather than NCGS, since NCGS doesn't usually cause intestinal damage. Your doctor might consider ordering additional tests like IgG-based celiac tests (tTG-IgG or DGP-IgG), or repeating the endoscopy after you've been gluten-free for a longer period to check for healing. Many celiac specialists would actually diagnose you with celiac disease based on your biopsy results combined with your positive response to the gluten-free diet, regardless of the blood test results. It may be worth consulting with a gastroenterologist who specializes in celiac disease for further evaluation. Your experience highlights why celiac disease can be so challenging to diagnose and why doctors need to look at the whole clinical picture rather than relying on any single test.
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