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Runningmomma

Positive gliadin is now normal

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7 hours ago, Gemini said:

You know, they really ought to standardize testing protocol a bit better for some diseases like Celiac so we have some consistency here!  I have never seen the combined assay before and I am not really sure why they would combine antibody testing like that but hey, I am not wearing the white coat!

Increased IEL's also happen in the early stages of Celiac and we all know it can take YEARS for it to get bad enough for the blood screen to scream positive or show up as Marsh damage on biopsy. As a first degree relative, you know you probably have the ability to pop for it. Have you had the gene testing done? I think the pill cam is a good idea and it will be interesting to see what it shows when you have it done.....hopefully!  Are you gluten free now before any more testing?

The celiac center at Columbia just published a study in February on TTG negative DGP positive biopsies. They utilized both screens. It is maddening. I thought I had the answer then....nope! I think they even make a TTG/DGP screen but do not quote me on it. 

Yes, I am gluten free now as of late May per my specialist. I have undergone so much testing and more then one gluten challenge. I am DQ2 positive. 

I was thinking of restarting gluten just for the pill cam as it may be several more weeks due to insurance. But I do not think I will. 

Almost daily, I go through an episode of horrible pressure in my right ribs. Sitting makes it worse. I can feel it radiate through my right neck into my head. Sometimes it causes an irregular heart beat. I would swear I had an obstruction in the hepatic curve of the colon (this symptom started last summer after stabbing pains post a colonoscopy so I thought maybe it twisted). Alas, I still "go", so obviously I am not obstructed. 

I will keep everyone posted on the pill cam. 

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Hello again! I called the gastro's office today and the receptionist told me that they mailed my results today, but she looked them up for me. I feel like this office is really incompetent. They changed my procedure time from 10 am to 7:30 am and didn't inform me. Anyway, the receptionist looked up my results and said the colonoscopy came back normal and also the endoscopy. I asked her about the tests, because they biopsied for Celiacs, h.pylori, and microscopic colitis, and she told me that my esophagus was normal. Everything was normal. When I asked her if the results said anything about marsh stages she said it just said normal. So my question is, is this normal? Lol! I feel like she was just looking at the immediate results of the scopes so now I'm in limbo till it comes in the snail mail because they are closed for the weekend. So frustrating! Isn't the celiac biopsy determined by marshes?

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4 hours ago, Runningmomma said:

Hello again! I called the gastro's office today and the receptionist told me that they mailed my results today, but she looked them up for me. I feel like this office is really incompetent. They changed my procedure time from 10 am to 7:30 am and didn't inform me. Anyway, the receptionist looked up my results and said the colonoscopy came back normal and also the endoscopy. I asked her about the tests, because they biopsied for Celiacs, h.pylori, and microscopic colitis, and she told me that my esophagus was normal. Everything was normal. When I asked her if the results said anything about marsh stages she said it just said normal. So my question is, is this normal? Lol! I feel like she was just looking at the immediate results of the scopes so now I'm in limbo till it comes in the snail mail because they are closed for the weekend. So frustrating! Isn't the celiac biopsy determined by marshes?

If it comes back negative for celiac you could still have NCGS and still require a gluten-free diet. We have a few members with this kind of issue that can give you more information on it.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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