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

Whats Wrong With Me? Pls Help!


imagine22

Recommended Posts

imagine22 Contributor

Pre diagnosis with celiac (By blood test & biopsy) 4 mths ago I got D about once a week and was tired all the time. When I was having the tests I had to eat more gluten than i normally did and go D 1-2 time sa day. Then after going gluten-free I initially felt much better and got D once a week still, then it gradually got more and more frequent and now I get D 1-3 times a day despite being STRICTLY gluten-free for 3-4 months. Oh when I get glutended (havent for 2 mths though, I get stomach cramps and flatulence for 2 days after and D so its not that im getting glutened). I also had a month of headachs everyday in december /Jan but they stopped totally.

I think there may also have been some traces of blood in it too. Im worried why and i worse gluten-free is something else wrong?

thanks


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



Celiac.com Sponsor (A8-M):



Nantzie Collaborator

It sounds like gluten may be getting in. Also, are you also dairy-free? Most people have a problem with dairy for the first several months. It turns out it's the very tips of the villi that are destroyed that make the enzymes that digest dairy. Once the villi grow back, most people can have dairy again.

As far as checking for hidden gluten or sources of cross contamination, I would suggest

- Checking for hidden gluten.

- Checking personal care products such as soaps, shampoos, cosmetics, medicines, etc.

- Check for cross contamination - are you using kitchen items that were also used for gluten? Cutting boards, toasters, colanders, some kinds of pots and pans, wooden spoons, etc. Are you using butter, peanut butter, mayo, etc that is also used with gluten?

You didn't mention if you were male or female. If you're male, you also need to have your wife or girlfriend check her cosmetics and nail polishes. If you have gluten-containing nail polish and use your hands to prepare food, or eat food with your hands, you're getting glutened.

I hope you feel better soon.

Nancy

GlutenWrangler Contributor

If you are 100% positive that you are not ingesting any hidden gluten, I think that it would be a good idea to see a doctor. Blood in your stool can mean various things, from ulcers to ulcerative colitis and Crohns Disease. Less serious causes include a rectal fissure and hemorrhoids. Even if you find that you had been ingesting hidden gluten, you should still make sure that the blood isn't the result of another underlying condition. Good luck,

-Brian

flowergirl Rookie

The same thing happend to me when I went gluten-free. It solved some of the problems like the brain fog etc but I had increased episodes of D and was still tired all the time. Via elimination I soon found out that it was the sudden increase in soy as alternative to milk that caused the trouble. I started to avoid soy, chocolate, dairy etc (see my signature) and things improved slowly but significantly. I think eating organic and leaving out processed food (also gluten-free processed food) helped a lot.

Try elimination of food groups that cause intolerances and allergies. You may be surprised with the results...

Flowergirl ;)

sfm Apprentice
Pre diagnosis with celiac (By blood test & biopsy) 4 mths ago I got D about once a week and was tired all the time. When I was having the tests I had to eat more gluten than i normally did and go D 1-2 time sa day. Then after going gluten-free I initially felt much better and got D once a week still, then it gradually got more and more frequent and now I get D 1-3 times a day despite being STRICTLY gluten-free for 3-4 months. Oh when I get glutended (havent for 2 mths though, I get stomach cramps and flatulence for 2 days after and D so its not that im getting glutened). I also had a month of headachs everyday in december /Jan but they stopped totally.

I think there may also have been some traces of blood in it too. Im worried why and i worse gluten-free is something else wrong?

thanks

I have been having similar episodes, gluten free since before Thanksgiving. Like you say - I know when I have gluten - the cramping, bloating, gas, pain. But even when not, I sometimes have frequent D, find myself questioning my diet even though I know how careful I am being! I wonder if it is just that my stomach is not fully healed yet? So other things are affecting me, or simply I am "out of whack?" I have taken immodium occasionally - just to interrupt the D. It seems to help quiet things down.

Besides that one symptom, I cannot describe how much better I am feeling - better every day. But I know the frequent D, if it continues, could be a sign of something else, so I am unsure how long to give it. :blink:

Sheryll

Flor Apprentice

I'm glad I found this site -- I'm in the exact same spot. I went gluten-free three months ago, had been off dairy for at least six months before that.

Following birth of my son, I had rotavirus, mastitis, antibiotics, exhaustion, sleep-deprivation and a lot of emotional stress -- I think it triggered a more latent celiac disease. So for the last two years I had chronic diarrhea, joint pain, gas/bloating, anxiety, depression, constant fatigue. Was diagnosed IBS but knew that wasn't right.

I actually had a dream in which I was told I had celiac disease (at the time I didn't know anything about it) -- crazy, no?

So, about a week or two after I went gluten-free, ALL my symptoms disappeared. But then about three weeks later they started coming back -- and steadily, not as if I'd just slipped and gotten a little gluten by mistake. I went on Elaine Gottshall's "selective carbo diet" which meant cutting out all other starches and refined sugar. THAT worked for about a week -- symptoms gone again -- and then the symptoms returned.

SO I went BACK on her diet (which is tough to stick to) -- because I suspected bacterial overgrowth in my intestines -- but even despite that diet for over a week now, my symptoms are back in full force -- diarrhea, gas, bloating, joint pain, the whole thing.

I feel lost about what to do next. I was so delighted about my immediate response to the gluten-free diet and now it seems like nothing works. Is it just a matter of time or is there something else going on? Candida? What?

I think my only daily vice left is two cups of black tea with a T of soy milk in it and....dark chocolate. I've had a very occasional glass of red wine, but haven't noticed any correlation.

By the way, I had nutritional deficiencies and bone density tests done and despite two years of solid diarrhea and undigested food, I don't have any deficiencies that show up.

I would be most grateful for any ideas!

  • 2 weeks later...
imagine22 Contributor

I found out what was wrong!!! :) it was my multivitamin --> elevit - i was booked in for a colonoscopy & endoscopy and told to quit all vitamins, meds etc before it and i miraculously recovered and stopped losing weight and getting D within a few days of stopping the vitamin. I check by taking it again and yes symptoms returned. so i dont take it anymore and im fine :) the strange thing is they state gluten free on them and the labelling here is very strict so i dont know why they would make me so ill if not due to gluten, but hey im better.


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,684
    • Most Online (within 30 mins)
      7,748

    Betty Siebert
    Newest Member
    Betty Siebert
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.