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Celiac?


Buckeye3

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Buckeye3 Newbie

Iḿ waiting for the results of my endoscopy and increasingly worried that I do indeed have  celiac disease. About a year and a half ago, I had an abrupt onset of digestive issues that coincided with the onset of menopause. My general doctor ruled out celiac with a blood test and sent me to a GI, who told me that he did not think that there was anything wrong and recommended an OTC fiber supplement. At that point, I figured that the digestive issues were related to hormonal changes and did not worry about celiac. I did have increased bloating etc. with ingestion of breads,  oatmeal and peanut butter. I used to have oatmeal for breakfast and within an hour my stomach was horribly protruded despite only having a weight of about 115 pounds.   I had some significant menopausal symptoms going on in the midst of all of this which occupied my time and attention. Now most of these symptoms are gone, with ongoing treatment,  but the one symptom that has been consistent and severe is my digestion. Constipation, significant weight loss and discomfort in my belly is daily and constant. I have a swollen belly that makes me look pregnant.  I have worked with a dietician and been able to gain weight but still feel unwell. I did test positive for multiple food sensitivities, including gluten. Digestion has been less difficult with elimination of many foods  but still very uncomfortable. If I cheat and eat gluten or nuts I pay the price. Gluten was not the most severe of the sensitivities I was diagnosed with BTW.  I am highly reactive to dairy, which gives me headaches, many fruits, veggies, some fish, eggs etc. I have been treated for leaky gut also. I have been very good at avoiding most things on the elimination diet, I have cheated with bread and PB. My new GI found some lesions in my colon but nothing specific so prescribed Linzess for the consitpation. That, plus adding Miralax, did not really help so I had an endoscopy done and am waiting for results.   Does any of this sound similar to celiac? My endoscopy did show some mild lesions but I am waiting for the lab tests to find out what they are due to. Also, I was not told to take a gluten challenge before the test, so although I did have gluten in my system it would not have been a lot. I have also been newly diagnosed with arthritis.  Some of the other symptoms I have had but have improved after treatment severe fatigue, anxiety and a decrease in my overall motivation and organization of my life.   I apologize for the length of this post. Many thanks to anyone who has any feedback.    


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GFinDC Veteran

Hi Buckeye,

You need to keep eating gluten for the celiac testing to be accurate.  The celiac tests are for antibodies produced as a reaction to eating gluten.  So if you aren't eating gluten the antibodies can start to drop off  in the blood stream and are harder to detect.

Here is a list of some the antibodies tests they might do.

Celiac disease antibodie tests

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

cyclinglady Grand Master

Keep on researching!  Another mis-informed doctor! :( Gluten Free in DC has given you the blood tests because just villi damage (hope they took at least four biopsies of the small intestine and were looking for celiac disease) can be attributed to many things (like parasites, SIBO, allergies).  So, the blood test is part of the total diagnostic package.  Read this link to the reputable site:

Open Original Shared Link

 

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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