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

Intermittant Symptoms?


grey144

Recommended Posts

grey144 Newbie

Hi all,

Question from a newbie - Can symtoms be intermittent? I would think that the severity of symptoms could be intermittant, as I understand celiac disease, depending on the amount of gluten consumed. But can symptoms come and go entirely? My problem is I (or my mds) never thought about celiac disease/gluten so I never paid any attention to whether there was anything food-related to incidence.

I hit on the celiac disease possibility when trying to figure out why I have a B12 deficiency - once my rheumatologist had me tested for pernicious anaemia and the test came back negative, he told me I was just stressed, and didn't even want to treat the b12 deficiency. Granted, I am stressed, but...

About a year and a half ago, I had a bout of really severe fatigue and muscle/joint pain, coupled with ataxia and various neuropathies, and a B12 deficiency. I saw a neurologist and rheumatologists, had a million tests, and all they could find was the B12 deficiency. Symptoms eventually improved, but still daily (and nightly) pain and fatigue (milder), as well as constant upset stomach, "urpiness", and frequent nausea and various of the GI-stool symptoms( all started about the same time, as far as I can tell). I also had a really strange, ITCHY, blistery rash for a year or so on my elbows that's pretty much gone now; treated by topical steroids and antibiotics.

But my symptoms aren't always severe or incapcitating - or present. Looking at the big list of symptoms for celiac disease, I have about 30 of them, or have had at one point or another, but may or may not have them now. They've led to me being tested for everything from MS to diabetes. (all negative). Only test that's ever shown anything is the B12 (never explained). I'm being treated for acid-reflux now and my gp. thinks that most of my GI symptoms could be explain by acid reflux.

My m.d. just ordered the TTg test, and I'm waiting for the results. But I understand from reading that if celiac disease isn't very severe, and there isn't yet damage to the intestine, it might come back positive even if I did have celiac disease. I'm trying to decide if celiac disease is a possibility, and whether I should push for more tests if it does come back negative. If I were to go gluten-free, I understand it'd be harder to get an accurate diagnosis.

I hope that some of the more experienced on the board can give me some advice on how best to explore if celiac disease is a possibility for me.

Thank you! And I hope I didn't write too much or ask the wrong kind of question; please forgive the newbie if I did.

Thanks again,

kate


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

My symptoms have never been severe enough to keep me out of work or particularly at home for very long. (I don't get the bad diarrhea...) And they seemed to bother me more at some times than others. I used to think they were intermittent as well, but after going gluten-free, I realized that they were less intermittent than I thought (though not always as bad as on the day before).

kalo Rookie

Hi Kate. I've just been learning about this for under a month. Everything I've read leads me to believe you SHOULD get tested for it. All your symptoms point towards celiac disease. I don't know about intermittent but my doctor did ask me if I ever had times where I felt better. The answer was yes, although very rare. That was before he mentioned he thought I should be tested for this. Anyways, do a search for celiac testing and you will find enterolabs. They have a non invasive simple stool test that is VERY sensitive and accurate and doesn't matter whether you are gluten free or not. Expensive test (if you do the full panel like I did) but worth it. You might also try going gluten free and see how you do after a few months. I'm still waiting for my test results. Hugs, Carol B

celiac3270 Collaborator

Well, all I know about intermittant symptoms is that when you hit puberty symptoms can decrease in severity regardless of gluten intake or go away entirely. This is why doctors used to think that you grew out of celiac disease.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,200
    • Most Online (within 30 mins)
      7,748

    TGE
    Newest Member
    TGE
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
×
×
  • 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.