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

Just Started Gluten Free Diet And Feeling Worse


Mich

Recommended Posts

Mich Newbie

First a little history,

I had the blood test and it came back negative for Celiac My doctor thinks I still have Celiac and wants me to go gluten free. I see this doctor for a vitamin d deficiency. I currently take very high doses (100,000 miligrams a week) to keep my d levels at normal. That is really my only symptom except I have a long history of stomach problems and nausua. I was treated for H. Pylori and gastritis in 2000 and had a long recovery from that for my gut to heal. I find that whole grains do not agree with my stomach, but it includes brown rice as well as gluten products. I also have problems with egg and dairy. BMs are never a problem.

Well, I started the gluten free diet on Friday and my stomach is killing me worse than before! It is a clenching feeling. Normally I feel a little irritation in my stomach, this feeling is more intense like gastritis. I am eating a lot trying to sooth my stomach. Was the gluten actually soothing my upset stomach? Is my problem really Celiac?

BTW: the doctor recommending the gluten free diet and that has me on the vitamin d is my gynocologist. My primary physician has done nothing for me despite my complaint of chronic digestive problems.

Thanks for the help.

-M


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

Stay with it Mich, you may feel this way for a bit, but it should get better. Your body has to rid itself of all the gluten poisons in it now. Use a heating pad and look forward to feeling better, ok!

RiceGuy Collaborator

The only thing I can add at this point, is that vitamin D isn't measured in milligrams, so I think the amount you describe would be truly excessive if not deadly.

It is quite possible to overdose on many nutrients, including vitamin D. Since the body stores vitamin D for later use, I personally find it difficult to accept the idea that your level would continue to be low for very long after starting the injections. I may be wrong though, as I'm certainly not the expert on this. I do know that many nutrients play a role in the absorption of others, so it would not surprise me if something else is causing the vitamin D to not be utilized.

Many Celiacs find they need B vitamins. B12 in particular, and some minerals such as magnesium, and calcium. Apparently this may or may not show up on blood tests.

Mich Newbie

Thanks for the responses.

I was wrong to say miligrams, the prescription bottle actually says "units" so I am unsure what I take. And they are not injections, just pills. My levels are actually now normal, but because I take prescription d. If I go off the prescription or take less, my levels shoot down and I have muscle pain. I was tested for calcium at one point and that was normal, but I take a calcium supplement too.

My stomach feels much much better a week on the diet. :D Maybe the initial pain at the start was stomach damage that needed to heal a bit. I still am ravonously hungry though.

Archived

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

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

    • Total Members
      133,202
    • Most Online (within 30 mins)
      7,748

    Nana Susie
    Newest Member
    Nana Susie
    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.