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

New And Kinda Confused

ebradford

Recommended Posts

ebradford Newbie
ebradford
Posted

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
shadowicewolf
Posted

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
mushroom
Posted

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
ebradford
Posted
  • Author

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
nvsmom
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,439
    • Most Online (within 30 mins)
      7,748
    Lillian Steele
    Newest Member
    Lillian Steele
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

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

      By Scott Adams · Posted

      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
      Inconclusive results

      By Scott Adams · Posted

      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
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

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

      By cristiana · Posted

      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.