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Breaking Celiac Point- Frustrated Confused Anyone...


Jeano

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Jeano Newbie
:( So today I met with the gastronolgist waiting to hear the results of my upper endoscopy, he informed me that he did not find any sprues (other than the inflammation in the stomach area currently being treated with Nexium), my blood work showed antibodies of celiac so he said its possible it could be in my small intestine... So he thought it would be a good idea for me to try a gluten-free diet for 6-8 weeks and see if I felt any better and follow up visit with him then. I have been sick for almost a year off and on, I am always tired, my joints hurt, body aches, abdominal pain, vitamin D and vitamin b-12 deficient, blood sugar up and down , etc--- ahhhh I am going to lose my mind, - oh and I've had just about test after test, doctor after doctor- they probably already think I am crazy, the gastronolgist asked me today if everything was okay with my family and job- I told him don't even go there- I am not depressed, I am frustrated with no confirmation of what is going on with my body,! Did I mention I take 2 presidone steriods/ plaquenil (some drug that takes 2 months to work for inflammation of joints although the test show no inflammation ), a day just to help me get thru the day?--- I feel like one of those mystery diagnosis cases, I have gotten to the point if I don't feel any better trying this gluten free diet and try to lose 20lbs, I am going to demand specialist, and do some crazy research mission till I find answers.. Any one ever been where I at???? Any suggestions or comments?

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itchygirl Newbie

I'm on Plaquenil for my Sjogrens, it worked quicker than two months. more like two weeks. Hopefully after you go gluten free things will get a lot better, you can get off the steroids and be healthier (and loose the 'roid bloat) Have you seen a Rheumy?

You don't sound like a mystery, you sound like an undiagnosed celiac ;)

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    • DebJ14
      Migraines ran in my family, on my father's side.  All of my female first cousins on that side, and our grandmother suffered from Migraines.  Grandmother died in 1984 so we do not know if she ever would have been diagnosed with celiac disease. However, all 4 of us cousins were diagnosed with celiac disease between 2003 and 2007.  The dermatitis herpetiformis rash is a blistery, super itchy rash.  When they do the biopsy they take it from non-involved skin that is next to the rash.  If done wrong, the results may not be accurate.  Have you ever had one done? In that case, I agree that maybe she has you still on gluten for a biopsy.  But, if she has not ordered it nor referred you to a gastroenterologist, then I would question her advice.  
    • trents
      Scott Adams makes an excellent point about the possible pending scope with biopsy being the reason you were advised to keep eating gluten, @NCalvo822! You might want to get some clarification about that. What you don't want to happen is to go gluten free and then have to go back on gluten at some point in order to produce valid scoping/biopsy results.
    • NCalvo822
      Definitely useful info. Thank you!
    • Scott Adams
      It's possible that your doctor wants you to do an endoscopy to confirm the diagnosis, and if that is the case that could be why they don't want you to go gluten-free before that procedure is done.  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • NCalvo822
      Hi! Your history is interesting as I see parallels with my history. I too had migraines since childhood, but they run in my family so I didn’t think there could be any connection to the celiac. Also, the migraines have tapered off after menopause. I too have trouble walking in a straight line. And yet another similarity is I have been seeing both a dermatologist and an allergist for many years. The allergist has run many tests for my skin issues, but concluded I am not allergic to anything. I do occasionally get hives and am on daily medication to control the hives and other rashes or similar issues. At my last appt with allergist recently, I informed them of my new diagnosis of celiac disease. They said that it has nothing to do with my skin issues. They didn’t even put it in my chart. I know because I read the notes from the visit on the patient portal. However, your post has me second guessing my skin issues and possible connection to celiac disease.
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