Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

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

5 posts in this topic

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....


Share this post

Link to post
Share on other sites

Ads by Google:

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!


Share this post

Link to post
Share on other sites

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.


Share this post

Link to post
Share on other sites

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.


Share this post

Link to post
Share on other sites

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!


Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • Yes it most certainly could be a false negative, and I would bet you a dozen donuts that it is (gluten free, of course.   )  At the very least you can be sure it is related to gluten.  These gluten rashes take forever to clear up.  I don't know about you, but whenever I start to doubt my gluten intolerance, I just look at my skin, and the old blood stains on my sheets, and I am reassured that it's not all in my head, and I need to avoid gluten as if it were a bucket of battery acid.
    • Hello, My fiance and I are going to Singapore for our honeymoon next year and I was wondering if anyone knew any cafes/restaurants etc that have gluten-free dishes? We previously went two years ago and enjoyed ourselves so much that we definitely wanted to go back our our honeymoon. Catch is I got diagnosed as being gluten intolerant a few months ago, negative for Coeliac though. If I eat gluten I have bad nausea, bloating, diarrhea etc. Not pretty for a honeymoon :-) I am more than happy to eat fruit at breakfast and make do with steamed rice at dinner etc but if anyone has any ideas on anywhere I can safely eat that would be much appreciated. I don't care how much it costs! Also is it possible for me to bring packaged gluten-free food into Singapore from Australia? I am not sure on the rules. Thank you!!
    • Went in and talked to the manager of our pm and asked about the gluten free pizza, and he told me he can't guarantee its 100% gluten free because of the flour in the air from the other crusts being made.  I value the honesty.   The other employee also mentioned changing gloves.   I was thinking wow great, until I walked out and got to thinking about cross contamination from everyone grabbing the toppings out of the same bins and spreading the sauce with the same utensils.    My son was just diagnosed this week so we are new to the whole lifestyle.   So any help or info is greatly appreciated.    Thanks  
    • Before i was diagnosed 2 years ago i had a severe chronic itchy scalp.  It would develop minor pimple like blisters then turn in to sores from the intense scratching.  At the time the dr i saw did a punch biopsy on the original sore, it came back with a florescent pattern and micro abcessing.  i saw a dermatologist who said it was a staph infection (wasn't checking for dh) sent me home with cream and a steroid lotion, didnt work. Shortly after i was diagnosed with celiac and went back to the dermatologist.  He did a punch biopsy BUT he took it from the top of my butt cheek saying that was the most common spot for dh to manifest.  My results were negative.   my question is...   Can this be a false negative due to the punch biopsy not being taken from skin adjacent to the lesions? since being gluten free the intensity has subsided but is still there.
    • Hi Morna.  I will have to add Tom and Chee's to my list.  I have found so many new restaurants on this forum.  My family's birthday season is coming up (I swear, everyone was born between September-December), so I am going to have to check out the bakery on Campbell Station.  Sneak in some gluten-free cake and goodies and see if anyone notices.  I miss cake.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member