Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


angelluv1019

Recommended Posts

angelluv1019 Newbie

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....


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



sisterlynr Explorer

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!

nvsmom Community Regular

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.

tarnalberry Community Regular

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.

nosy parker Apprentice

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!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,738
    • Most Online (within 30 mins)
      7,748

    Werthesmiths4
    Newest Member
    Werthesmiths4
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  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:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. 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:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.