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

Feeling So Down :(


blossom102

Recommended Posts

blossom102 Newbie

hi everybody, for the past year iv'e suffered terrible stomach pains,severe trapped wind in my chest,fast heart rate and palpitations (taking beta blockers and gerd reflux tablets) constipation (although this is normal) and vomiting, i went to the doctors 8 weeks ago, and because celiac runs in my family he told me to go on a strict gluten free diet for a month,which i did,i was great,felt healthier and happier and my symptoms completely disappeared, so i returned to the dr to let him know how i got on,he has diagnosed me with celiac and even put me on prescription for gluten free bread,pasta etc, he wont test me though, he says if it walks like a duck,quacks like a duck then its a duck,which i find very frustrating, as i almost resent something i dont even know for sure i have, maybe im using it as an excuse to eat the stuff i should'nt eat anymore, like ohh ill eat that chocolate cake because its probably not even celiac (which i did yesterday and now im in agony) can anyone relate?? feeling so miserable and down and just want to go for a meal with my friends and not have to eat salad all the time just because i know its safe! sorry for moaning xxx


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I can sort of relate.  I was  formally diagnosed this year, but my husband went gluten free over 12 years ago at the advice of his GP and my allergist.  The first year was hard for him (lots of denial).  He'd continue to sneak gluten and then he'd feel awful.  It took about a year, and then he finally gave up gluten for good (except for getting "glutened" accidentally outside of the house).  

 

We were both pretty naive his gluten issues in the beginning.  We had no idea about the long term health issues that can develop over time.  Luckily, he hasn't developed any other issues, but that's not the case for me.  I didn't have any symptoms other than anemia and having had Hashimoto's Thyroiditis for almost 20 years.  I was diagnosed during a routine-over-fifty colonoscopy.  The GI doc looked at my chart during the pre-op visit and declared that I probably had celiac disease.  I was shocked.  More shocked when I fractured a vertebrae a few months later and was diagnosed with osteopenia and osteoporosis.  That diagnosis was huge, especially since I've always been active and love riding  my bike! 

 

Perhaps you should discuss this with your doctor.  If you think you can do a challenge (consume gluten for a couple of months), you can get the complete blood panel and and endoscopy.  This may help you adhere to the diet.  

 

Good luck in whatever you decide to do!  

 

P.S.  I just baked apple cinnamon cupcakes and chocolate chip cookies last night (bake and freeze).  Chocolate mayonnaise cake is next.  So, you can can your cake and eat it too, just make it yourself!  Always take a treat with you when going out.  Isn't that why everyone carries a big purses?  

GFinDC Veteran

I think you've got a pretty smart doctor there.  It would have been better for him/her to draw the blood for antibodie testing before you went gluten-free tho.  Doing the testing later requires months of eating gluten before the antibodies build up enough in the bloodstream to be measureable.  Most of the antibodies are in the gut, instead of the bloodstream.   Only you can decide it it is worth it to you to get a lab result that indicates celiac disease.   Is damaging your body for 3 months worth that to you?  One thing you already know is you get sick when you eat gluten.  Do you think that will change if you have a lab report saying this, or saying that?  More than likely your body will do the same thing regardless of lab tests.

 

Some times people report that recovery from a gluten challenge is slower than initially going gluten-free.   We have had people report new symptoms from a gluten challenge that didn't go away afterwards.  So there is a risk to it.  That doesn't seem to happen very often tho.

 

Eating gluten-free is a difficult adjustment for some people at the beginning.   But it's on the beginning for a few months to a year.  Then it gets to be the new normal and you are used to it.  So it's not a big deal then.  It can take weeks to months for the antibodies response to taper off.  If it's worth being sick for 3 more months to you then go for it.  Either way is fine, it's a personal decision to make.

NoGlutenCooties Contributor

I agree with GFinDC that it is a peronal decision as to whether or not to do the gluten challenge at this point but personnally I think your doctor is a bit of an idiot.  Getting a diagnosis before going gluten-free can be important because the biopsy can detect if there is something else going on too - besides the Celiac.  I would also suggest talking to your doctor about getting a full blood panel done so you can see if you have any vitamin deficiencies.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    2. - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    3. - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    4. - cristiana replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,438
    • Most Online (within 30 mins)
      7,748

    rednecksurfer
    Newest Member
    rednecksurfer
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
    • deanna1ynne
      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • 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.