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I Didn't Know Who To Turn To...
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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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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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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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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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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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    • Hi Calla, I think the safe answer is 12 weeks on gluten for a blood test.  I am pretty sure they say 2 weeks on gluten for the gut endoscopy.  But usually people/doctors don't want to  do an endoscopy before a positive blood test, so catch 22 there. There's a chance you still have active antibodies in your blood after 3 weeks off gluten.  But nobody can tell you for sure.  If you can get you doctor to test you now and in 9 more weeks if you are negative now, that might work.  If the doctor is willing to do 2 tests, that would be great. The best thing would have been to do all celiac disease testing before going gluten-free.  But sometimes it doesn't work out that way. The University of Chicago celiac center has an FAQ that answers some of your questions. http://www.cureceliacdisease.org/faq/i-dont-have-the-money-to-get-tested-for-celiac-disease-but-a-gluten-free-diet-makes-me-feel-better-is-it-okay-to-start-the-diet-without-being-diagnosed/ Welcome to the forum!  
    • Couldn't have said it better!  
    • If you are going for an endoscopy, then please ask for a celiac antibodies COMPLETE panel.  This will help you determine if you have been diet compliant (zapped by hidden sources of gluten or accidental cross contamination) and if your doctor misses the (possible) damaged areas during the procedure.    That way you can rule out celiac disease and THEN worry about the possibility of other AI issues.   I did this last summer.  I got really sick.  My GI thought SIBO right off the bat.  But I asked just to be tested for celiac disease.  Sure enough, I had elevated antibodies.  No need to test for SIBO or anything else at that point.  I just waited a few months for symptoms to subside.   Good Luck to you!  
    • That's good Megan, that you were tested.  Many people have the genes, but only some develop the disease.  Your doctor is right about celiac often appearing after some kind of physical stress or illness. The tricky thing about eliminating one food is that you body may be reacting to multiple foods.  So not getting better could mean you just eliminated one problem instead of 3. It's not unusual to have digestion issues for quite a while after going gluten-free.  Our guts are damaged and that damage has to heal.  But it can't heal until the immune system stops it's attack.  The immune system attack/reaction can keep going for weeks to months.  So it can be a slow recovery.  Often people report getting better and then getting worse and going back and forth on symptoms. What doesn't help is that our bacteria in our guts can get really screwed up by the disease process.  We can't properly digest things so there is more undigested food for bacteria to thrive on.  Avoiding sugars and carbs can help with that issue. Here are some starting the gluten-free diet tips for the first 6 months.  Some of these you have already taken care of: Get tested before starting the gluten-free diet.
      Get your vitamin/mineral levels tested also.
      Don't eat in restaurants
      Eat only whole foods not processed foods.
      Eat only food you cook yourself, think simple foods, not gourmet meals.
      Take probiotics.
      Take gluten-free vitamins.
      Take digestive enzymes.
      Avoid dairy if it causes symptoms.
      Avoid sugars and starchy foods. They can cause bloating.
      Avoid alcohol.
      Watch out for cross contamination. Helpful threads: FAQ Celiac com
      http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/ Newbie Info 101
      http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/
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