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Celiac Disease Pre-Diagnosis, Testing & Symptoms
If you haven't yet been diagnosed this is the place you can discuss your symptoms and any test results that may indicate that you might have the disease.
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Recent Activity
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- DayaInTheSun replied to DayaInTheSun's topic in Coping with Celiac Disease5Being a burden to family/friends
Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid. Before that ... -
- Kiwifruit replied to Kiwifruit's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms7Years of testing - no real answers
This is all really useful information, thank you so much to you both. I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again. -
- trents replied to Gill.brittany8's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms19 Year Old test results - help interpret
Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the... -
- Gill.brittany8 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms19 Year Old test results - help interpret
Hi everyone After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra i... -
- Mnofsinger replied to Mnofsinger's topic in Related Issues & Disorders7Food Tasting Salty
Those are great points and some follow up thoughts and ideas. I think you're both stating the same thing in two different ways, but I appreciate the "accuracy" of what you're getting to. 1. Are you both stating that the "too salty of a taste" could be triggered by a histamine reaction, and the flavor is coming from the electrolytes? If...
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By DayaInTheSun · Posted
Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid. Before that I was able to eat all those things (minus gluten) I was diagnosed with celiac way before I had Covid. Hmm, not sure really. I may look for a different allergist my current one told me to take Zyrtec and gave me an epi pen. -
This is all really useful information, thank you so much to you both. I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.
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Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. It takes both the genetic potential and some kind of triggering stress factor (e.g., a viral infection or another prolonged health problem or an environmental factor) to "turn on" the gene or genes. Unfortunately, your daughter's doctor ordered a very minimal celiac antibody panel, the tTG-IGA and total IGA. Total IGA is not even a test per celiac disease per se but is a check for IGA deficiency. If the person being checked for celiac disease is IGA deficient, then the scores for individual IGA tests (such as the tTG-IGA) will be abnormally low and false negatives can often be the result. However, your daughter's total IGA score shows she is not IGA deficient. You should consider asking our physician for a more complete celiac panel including DGP-IGA, TTG_IGG and DGP-IGG. If she had been avoiding gluten that can also create false negative test results as valid antibody testing requires having been consuming generous amounts of gluten for weeks leading up to the blood draw. Do you know if the GI doc who did the upper GI took biopsies of the duodenum and the duodenum bulb to check for the damage to the small bowel lining caused by celiac disease? Having said all that, her standard blood work shows evidence of possible celiac disease because of an elevated liver enzyme (Alkaline Phosphatase) and low values for hemoglobin.
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By Gill.brittany8 · Posted
Hi everyone After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra information just in case. The results are confusing because they say “No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease.” But just a few lines down, it says DQ2 positive. Can someone help make sense of this? Thanks so much. result images here: https://ibb.co/WFkF0fm https://ibb.co/kHvX7pC https://ibb.co/crhYp2h https://ibb.co/fGYFygQ -
By Mnofsinger · Posted
Those are great points and some follow up thoughts and ideas. I think you're both stating the same thing in two different ways, but I appreciate the "accuracy" of what you're getting to. 1. Are you both stating that the "too salty of a taste" could be triggered by a histamine reaction, and the flavor is coming from the electrolytes? If that is the case, wouldn't the individuals mouth always be salty during a "Glutening" situation, or are we saying that the person could get "use to the flavor" until introducing food or beverage and that could be enough to "stir the pot" and notice the salty flavor? 2. To push back on "#1": If that were true anyone with issues of histamine releasing foods/treatments would experience the same thing. Also, I did not experience a situation where most beverages were "too salty". Thoughts?
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