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Whats Wrong With Me? Pls Help!


imagine22

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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


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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.


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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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