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New To Celiac And I Need Help

gointribal

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gointribal Enthusiast
gointribal
Posted

I am new to Celica, well, I don't know if I have it or a really bad allergic reaction to milk. I have been milk free for over a year and it helped but I wasn't totally better. Then a friend of mine who has celica, said I should try going gluten-free. I have seen great improvements, its wonderful. However I am getting married and I really want to know if I have Celica or not. The Dr did draw blood and my combined % was 2.1 but they said that was ok (even though it was high). I didn't really understand all that and had to take their word for it. I did have a colonoscopy done and I was fine. I am going in for a EDG next month and I was wondering if I HAVE to go back on gluten? I told myself yes I did and so far its been four days of hell. I can't keep going like this, but will it change the test results? Any ideas because I can use all I can get :D

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tarnalberry Community Regular
tarnalberry
Posted

I don't know what you're referring to when you say your "combined percent". The blood tests for celiac disease are anti-gliandin IgA and IgG, anti-tissue transglutimerage IgG, endomyosial antibodies, and total IgA. You *must* be eating gluten (in the amount of approximately 3 slices of bread a day for three months) for the tests to have a reasonable chance of not giving a false negative.

But listening to your symtpoms is important as well. If you feel that the dietary challenge you have done is enough for you, then perhaps that's all you need to know in order to stay completely gluten free.

sneako Rookie
sneako
Posted

Speaking of milk, ever since going gluten-free I can't stop drinking milk! I find myself going through an entire gallon twice a week. Before going gluten-free most of the container would spoil before I got around to using it. Why the intense craving?

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      Welcome to the forum, @ellyelly! How much gluten were you eating in the weeks prior to the endoscopy?  Many people with indeterminate results had cut down or eliminated gluten from their diet beforehand.  This can lower the autoimmune response and decrease the symptoms (lower antibody levels,  reduced inflammation and intestinal damage may heal).   If you weren't eating a sufficient amount of gluten per day in a minimum of two weeks prior to the endoscopy, you may want to do another gluten challenge with repeat endoscopy. Here's an article that explains, be sure to read the comments.   
    • ellyelly
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      By ellyelly · Posted

      Hi all, Such valuable insights shared here - I am so grateful to be able to read along! Thank you all for sharing your wisdom.  I (37yo female) have recently had an endoscopy to screen for celiac given a strong family history and extremely low Ferritin for the past 7 years (not responsive to oral supplements). I am awaiting celiac blood panel results (completed post-endoscopy to provide another piece of the puzzle, I think was just an accidental oversight not doing earlier).  The endoscopy results are as follows: Gastroscopy:  Stomach: Mild gastritis and one 4mm benign appearing inflammatory polyp in the body.  Duodenum: Largely normal but few shallow erosions seen in the duodenal bulb. Microscopy:  1. Sections show specialised and non-specialised gastric mucosa with increased numbers of chronic inflammatory cells within the lamina propria including occasional clusters of plasma cells amounting to mild chronic inflammation. No active inflammation, intestinal metaplasia, dysplasia or malignancy is seen. Immunostains for Helicobacter organisms are negative. 2. Sections show small bowel mucosa with normal villous architecture. A mild non-specific intra-epithelial lymphocytosis is noted at the villous tips of uncertain clinical significance. The lamina propria contains a normal population of chronic inflammatory cells. No granulomas or parasites are seen. There is no dysplasia or malignancy. Conclusion 1. Gastric: Mild chronic inflammation 2. Duodemum: Mild non-specific intraepithelial lymphocytosis with preserved villous architecture.  The GI specialist, assuming blood tests come back normal, feels it is unlikely that it is celiac given the normal villous architecture. Suggested continuing on as usual and monitoring for symptoms etc, screening with blood test if required in the future.  Worth a second opinion or does this seem accurate? Anything else I should be considering? I feel a little lost as to how to best proceed! Thanks again.  
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