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I Didn't Know Who To Turn To...

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Posted 05 April 2013 - 01:38 PM

My doctor told me about a month ago that I needed to go on a gluten free diet to see if it improved my stomach issues because I told her I was miserable and tired of drinking Pepto on a weekly (sometimes daily) basis. 


SO I have and I feel so much better! I have energy. I'm not feeling weighed down after meals. I actually know what it means to be full and not feeling like I over ate when I didn't. I have even seen improvement in my diabetes. 


But the more I look into things, maybe I'm not doing the right thing! Should I have the testing done? Does it matter whether I have celiacs or not? I'm so confused.....and scared for several reasons. 


I don't want to go back to gluten and being sick. Period. It was awful to live like that for years and being told I'm crazy for all the aches and pains I had including random swelling in my joints on my thumbs. And the fibromyalgia diagnosis was bogus now that I know that having celiacs and gluten sensitivity could cause me to hurt the way I was hurting. 


I don't get to see my doctor until May due to changing jobs. If I do need to get tested, I will already be about a month and 1/2 into the diet and from what I read, my tests may not show it. Which refers me back to reason number 1. I can't imagine having to eat it for 2 or more weeks. 


My family thinks I should leave it alone and just accept that I'm gluten intolerant and move on. I kind of want a definitive answer without the pain and suffering. Does it matter if I feel better and plan to eat this way for the rest of my life because I have noticed a significant change? Can I 1/2 and 1/2 it until I go see my Dr. again and maybe it will diminish my symptoms? 


Hopefully your guidance can help me make a decision....

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Posted 06 April 2013 - 02:11 AM

I agree with your family.  I was scheduled for a Endoscopy but cancelled as the GI wanted to do it separately from the Colonoscopy. In doing that my co-pay would have been $490.00 (for both) and I don't have the money.  My Int Med (my PCP) just talked with me yesterday and suggested I do just the Colonoscopy as 3 of my doctors have agreed I'm Celiac-DH.  I have family history of colon cancer and had polyps 3 years ago.  


I know eating gluten-free is the answer for me. . . you will have to make that decision for yourself.  I sure won't start eating gluten for a test, not after what I've been experiencing for way too long!  Good luck!

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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  






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Posted 06 April 2013 - 09:01 AM

Welcome to the board.


You are right that eating gluten-free will eventually cause all celiac tests to show a negative result. Some people will test positive even after a few months of eating gluten-free, depending on the damage in their intestine and how quickly their body stops making autoantibodies. You might have enough autoantibodies for a positive blood test after 1 1/2 months (you're gluten-free now?) but you might not; after 3 months it will be even less likely that you get an accurate result.


Is it possible to get the blood tests done now? Perhaps from some other doctor? Even if you do this, I would advise you to eat gluten for a few weeks before getting tested (if you're gluten-free) - a couple of slices of bread a day is enough.... There really is no way to ensure you get an sccurate test without the pain and suffering, unfortunately.  :(


There is no real benefit to getting tested except that you'll know if it's celiac or non-celiac gluten intolerance (NCGI). Bothe require a strict, 100% gluten-free diet for life so really, your treatment will be the same.  It really comes down to what you are most comfortable with.... Not helpful am I?  LOL


Best wishes to you, I hope you feel better soon.

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Nicole Posted Image

"Acceptance is the key to happiness."

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Posted 06 April 2013 - 02:49 PM

I am personally of the opinion that a dietary challenge is a valid diagnostic test and you do not always need to have a definitive diagnosis from your doctor to go gluten free.  Or that you even need a diagnosis.  If hitting yourself in the head with a stick hurts your head, you don't need a doctor to tell you to stop it.


On the other hand, if going gluten free leaves some symptoms behind that you would otherwise see a doctor for, then you'd probably want to follow up on those issues.  You couldn't be tested for celiac if you were gluten free, but you can still be tested for other issues.

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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA


nosy parker

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Posted 07 April 2013 - 05:36 PM

I may be in the minority but I think that an official diagnosis is important.  Not that it's easy to get, given the reluctance and lack of knowledge by the medical community.  If at all possible, I would do what I could to have the doctors exhaust all the possibilities to be sure I got the correct diagnosis.  I believe that it will make things easier medically once you have something official that says, yes it's celiac. It's a really serious disease and I would want my doctors doing the follow-up with the full knowledge that I have this disease. And of course it would be important if you have, or plan to have kids.  Or even for relatives who may be suffering from celiac and don't even know it.


If you do all that and you still don't get an official diagnosis, obviously going gluten-free at that point would be best for your health.


But I say all this not knowing just how sick you get on gluten.  It's just my opinion.


Good luck!

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