Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Thinking I Need To Be Gluten Free


lesliev523

Recommended Posts

lesliev523 Rookie

Hello-

I have had stomach issues for a few years now. I am a 38 year old female, and for the past four years or so, I have had trouble with constipation (to the point where my doctor felt I was becoming dependant on laxitives). I have been extremely bloated, with indigestion and acid reflux. Three years ago, I had appendicitis. Then about four months ago, I started to get gall bladder issues. At least we think. My HIDA scan was normal, but I showed polyps on my ultrasound. I did have an endoscopy, which resulted in some biopsies. As far as I know, the biopsies were normal.... although at the time I was focused on the gall bladder, so I am wondering if I should ask more questions on those results. I had my gall bladder out on Friday 9/16/11. I still feel like crap, although it could be a result of the surgery.

I am thinking of trying to go gluten free because while I was watching what I ate for my gall bladder, I noticed other things. Going low fat didn't necessarily make a difference. I did notice that ice cream, pizza, and burgers made me feel ill. But when I had a plain old order of french fries, I was fine. Beer also triggered me, but not in a stomach issue way... if I had a few beers, I noticed I was extremely stuffed up and congested the next day.

Does this sound like it could be gluten allergies? I am going for a follow up tomorrow, and am going to request a blood test for celiac.... as well as to be tested for other food allergies. I would love some feed back.

Thanks!


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



Celiac.com Sponsor (A8-M):



Marilyn R Community Regular

It definitely sounds like you're headed down the right road. Can you ask your GI for a copy of the radiology report from the endoscopy biopsies? I've had doctor's offices fail to report abnormal labs...

lesliev523 Rookie

It definitely sounds like you're headed down the right road. Can you ask your GI for a copy of the radiology report from the endoscopy biopsies? I've had doctor's offices fail to report abnormal labs...

That is a good idea. I asked my doctor about it today, and she said there was nothing indicating celiac. I am so frustrated.

So do I try to go gluten free until they decide to do the allergy tests? I have to wait a few more weeks before I can have that done because they want to make sure I am fully recovered from having my gall bladder out first. UGGH!! HELP!!

Roda Rising Star

I wouldn't think having your gallbladder out would affect the celiac blood tests.

lesliev523 Rookie

I wouldn't think having your gallbladder out would affect the celiac blood tests.

I agree.... but they think that I should start feeling better and that the issues I am having currently are related to the surgery. Honestly, I don't think it is. It is almost like I feel worse than I did before surgery. Sure, I am still surgery sore. But the nausea, cramping, and gas are so much worse than before. And I really don't think that those symptoms are surgery related.

I almost think that my doctors think I am silly for questioning gluten, and that they keep putting me off.

So should I just go gluten free and to hell with the testing?

Bubba's Mom Enthusiast

If you're still eating gluten I'd ask for a Celiac blood panel to be done at the very least. In some people (about 30%)the blood tests come back normal even with Celiac disease..and..you could still have a sensitivity/intollerance if not full blown Celiac.

Your symptoms sound like you have a problem with gluten.

If your Dr doesn't want to run the test, or if it comes back negative you can still try eliminating gluten on your own and see how you feel.

GB problems/symptoms are pretty common in Celiacs. Most Dr.s have a very narrow range of symptoms they think of in regards to the disease and are relunctant to test or DX it. Keep pushing for answers.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,387
    • Most Online (within 30 mins)
      7,748

    Tim Semas
    Newest Member
    Tim Semas
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
×
×
  • Create New...