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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to melthebell's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Persistent isolated high DGP-IGG in child despite gluten-free diet

    2. - melthebell posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Persistent isolated high DGP-IGG in child despite gluten-free diet

    3. - trents commented on Scott Adams's article in Winter 2026 Issue
      4

      Why Celiac Diagnosis Still Takes Years—and How to Change That

    4. - Jmartes71 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

    5. - par18 commented on Scott Adams's article in Winter 2026 Issue
      4

      Why Celiac Diagnosis Still Takes Years—and How to Change That

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

    • Total Members
      133,498
    • Most Online (within 30 mins)
      7,748

    genliu
    Newest Member
    genliu
    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

    • trents
      Welcome to the celiac.com community, @melthebell! I certainly would have a biopsy repeated as it has been 5 years since the first one. You mentioned he was scheduled for an endoscopy but make sure a biopsy is also done. It's possible he, like you are, is a "silent" celiac where the damage to the intestinal mucosa happens very slowly and can take years to manifest to the point of being detectable and where symptoms are minimal or absent. At 10 years old, his immune system may not be mature enough het to trigger the usual IGA responses that the IGA celiac tests are designed to detect.  I would also have genetic testing done to confirm that he has or doesn't have the potential to develop celiac disease. The genetic profile can also offer insight into the type of celiac disease a person will develop if they ever convert from latent to active. Take a look at table 2 under the section "Types of Celiac Disease" in the article found in this link: https://pmc.ncbi.nlm.nih.gov/articles/PMC9980758/  Genetic testing is available from 3rd party labs. I think you just have to send in a cheek swab sample.
    • melthebell
      Hello community; it's nice to have found you. I am a 42 year old biopsy confirmed celiac. I have had it since I was 18. Well managed on a gluten free diet. No idea if I have the gene (presume I do) as never tested. Diagnosed as was anaemic and had a high celiac market (can't recall which), and a positive biopsy. Asymptomatic. Given this, I regularly test my two children. My eldest is the child in question. First tested at age 5 due to slight anaemia. Everything negative except for a slightly high DGP IGG (slightly elevated at 25). Not IGA deficient. Did a biopsy with a pediatric gastro, was negative. Next test at age 8. Everything once again negative, high DGP IGG at 116 U/ml this time. Living in a country now with no celiac knowledge so decided to whack him on a gluten-free diet and see how he goes. Next test at age 9 after a year on gluten-free diet. Everything once again negative, high DGP IGG at 174 U/ml this time! On a gluten-free diet. Final test was a week ago at age 10, on continued gluten-free diet. Once again a positive DGP IGG, this time over 250 U/ml. On a gluten-free diet. what the heck is going on with my kid? We have seen a pediatric gastro via telehealth, who was equally puzzled and suggested doing a gluten challenge and an endoscopy, which we have schedule for end of April. Kid is otherwise fine. Energetic and growing well. No significant gastrointestinal symptoms. Has anyone encountered something like this before?
    • Jmartes71
      Domino's and Mountain Mike also has glutenfree pizza.However the issue is the cross contamination. Not worth a few minutes of yum yums i n the taste buds with a painful explosion later.
    • Scott Adams
      I don't recall seeing "many people here recommending RO water," but reverse osmosis (RO) water is water that has been purified by forcing it through a very fine membrane that removes dissolved salts, heavy metals, fluoride, nitrates, PFAS, and many other contaminants. It is one of the most thorough household filtration methods available and can be especially beneficial in areas with well water or known contamination concerns. While RO systems also remove beneficial minerals like calcium and magnesium and may produce slightly “flat”-tasting water, most dietary minerals come from food rather than drinking water, so this is not usually a health concern for most people. Overall, RO water is very clean and safe to drink, and it can be a smart option where water quality is questionable, though it may not be necessary in areas with well-tested municipal water.
    • Scott Adams
      With the wide availability of frozen prepared gluten-free pizzas, for example DiGiorno's, it's probably best to avoid the risk of eating pizza in restaurants that also make regular pizza.
×
×
  • 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.