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

New And Kinda Confused


ebradford

Recommended Posts

ebradford Newbie

I went to the doctor yesterday because I just could not stand how thirsty I am all the time any more. The nurse checked my sugar first thing, and it was fine. Then the doctor came in and started asking me some questions.

I told her I cannot get enough water (15-18 8 oz glasses a day and I am still thirsty). Of course, I have to go to the bathroom all the time as a result. We discussed my joint pain--thumb, elbow, shoulder and hip. I have been checked for RA, lupus, gout and nothing shows. Bone scans on my thumb (which is the worst) are fine. She asked about any digestive issues, and I told her pasta kills my stomach (diarrhea), that usually my bms are soft and greasy, and that I try to avoid pasta and usually bread because they make it worse.

But, by and large, the joint pain, fatigue, and foggy memory are worse concerns for me.

The first thing she said was it sounds like celiac. She is referring me for blood work, mentioned something about a biopsy, and so here I am--doing my homework!

I read that avoiding gluten can throw off testing. I can't say I have been gluten free, but I don't eat a high level of it, either. My stomach just does better when I don't have the pasta and such.

It felt so good to have someone validate what I was feeling, as I had started to think of myself as a bit of a hypochondriac. Part of me is worried that any testing will be negative and I will go back to feeling like it is all in my head!

Does this sound typical of celiac?


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Eh, if it does, then you probably have NCGI (non-celiac gluten intolegence). There is no testing for that outside of a gluten free trial I belive.

It could very well be. Pasta, and i was (correction still am) a pasta fanatic. The wheaty stuff would set my stomach off and fealt like lead. It did eventually get worse too.

Now i eat a corn/quinoa mix pasta and i'm happy :D

At any rate, you're probably getting enough in ya. Generally its reccommended for those who are doing a trial to do 1-2 slices of bread per day. But i think you can also sub that with other gltueny things.

mushroom Proficient

Congratulations on finding a celiac savvy doctor. The symptoms you describe are associated with celiac disease and, as Wolfie mentions, gluten intolerance in general. Tlhere is no way of knowing without testing which it is. It is true that low levels of gluten eating can affect test results because the tests are measuring the antibodies your body is making to gluten, hence: no gluten, no antibodies. :) In fact, this is the way to test for compliance with a gluten free diet - the absence of antibodies. I don't know how much gluten you are eating but eat as much as you can manage until your testing.

Welcome to the board and let us know how we can help.

ebradford Newbie

Thank you for the support and advice. I go in for blood tests next week, so I guess I will up my intake until then. And I will read up on both celiac and gluten intollerence!

nvsmom Community Regular

I met a celiac once whose only symptom was severe throat and mouth ulcers... celiac can affect almost anything, even brain and skin.

Good luck with the testing. I hope you get some clear and definitive results. If you are unsure of what the results mean, bring them here. There are a few veterens around here with a wealth of information. :)

And good luck with the gluten consumption... perhaps eat it in the evening before bed to minimize symptoms affecting your day. Best wishes.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,136
    • Most Online (within 30 mins)
      7,748

    drewsmom01
    Newest Member
    drewsmom01
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Zuma888
      Thank you for your response. You are right, this is not worth the damage to my thyroid since I know gluten is bad for me anyway. I stopped the challenge and did the IgA and tTG-IGA tests and am waiting for results, although I know it is likely they will be false negative anyway. I figured since I wasn't ever really strict about cross contamination, they might show positive if I do have celiac. I did the genetic testing a few months ago and was positive for DQ8.
    • Scott Adams
      I’m so sorry you’re going through this—it sounds like your body is sending a clear signal that gluten is a major trigger for your Hashimoto’s. The dramatic spike in your anti-TPO (from 50 to 799!) and the severe symptoms you’re experiencing suggest a strong immune reaction, even if celiac testing wasn’t done earlier. While a formal diagnosis would clarify cross-contamination risks, continuing the challenge may not be worth the damage to your thyroid and quality of life, especially since you already know gluten worsens your antibodies and symptoms. If you need answers, you could discuss genetic testing (HLA-DQ2/DQ8 genes) with your doctor—this can rule out celiac predisposition without a gluten challenge. For now, prioritizing your health by quitting gluten again (strictly, given your sensitivity) and supporting gut healing (like probiotics, L-glutamine, or zinc carnosine) might be the wisest path. Your thyroid will thank you!
    • trents
      Well then, I'd say he's making excellent progress. It can take some time for antibody numbers to normalize. Even though new antibodies are no longer being produced, it takes a while for the old ones to be disposed of. Make sure you keep an eye on the alkaline phosphatase levels. It is probably true that is tied to his adolescent growth spurt but it's worth tracking. Thirteen years of elevated liver enzymes was what eventually led to my celiac disease diagnosis. But I was 50 years old by that time and it was my ALT and AST that were mildly elevated all that time, not my alk phos. I just found out last week from an ultrasound that my liver is 20% larger than normal and I'm hoping that is a legacy effect. I have more testing lined up. 
    • CeliacMom79
      Hi. Sorry, his previous levels were >250 and we do not know how high they were. So yes, "off the chart". By 'detectable' I just meant that at 234 we now actually have a number as a baseline that we can measure future labs against. All his other liver test functions have been normal.  Just the elevated ALP. Thank you.
    • NoGlutenCooties
      Hi all I'm looking for a safe place to eat in Wilmington, DE. Any ideas? Thanks Jenny
×
×
  • Create New...