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
      131,930
    • Most Online (within 30 mins)
      7,748

    Mhp
    Newest Member
    Mhp
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Wheatwacked
      Definitely get vitamin D 25(OH)D.  Celiac Disease causes vitamin D deficiency and one of the functions of vitamin D is modulating the genes.  While we can survive with low vitamin D as an adaptation to living in a seasonal environment, the homeostasis is 200 nmol/L.  Vitamin D Receptors are found in nearly every cell with a nucleus,while the highest concentrations are in tissues like the intestine, kidney, parathyroid, and bone.  A cellular communication system, if you will. The vitamin D receptor: contemporary genomic approaches reveal new basic and translational insights  Possible Root Causes of Histamine Intolerance. "Low levels of certain nutrients like copper, Vitamins A, B6, and C can lead to histamine build up along with excess or deficient levels of iron. Iodine also plays a crucial role in histamine regulation."  
    • AnnaNZ
      I forgot to mention my suspicion of the high amount of glyphosate allowed to be used on wheat in USA and NZ and Australia. My weight was 69kg mid-2023, I went down to 60kg in March 2024 and now hover around 63kg (just after winter here in NZ) - wheat-free and very low alcohol consumption.
    • AnnaNZ
      Hi Jess Thanks so much for your response and apologies for the long delay in answering. I think I must have been waiting for something to happen before I replied and unfortunately it fell off the radar... I have had an upper endoscopy and colonoscopy in the meantime (which revealed 'minor' issues only). Yes I do think histamine intolerance is one of the problems. I have been lowering my histamine intake and feeling a lot better. And I do think it is the liver which is giving the pain. I am currently taking zinc (I have had three low zinc tests now), magnesium, B complex, vitamin E and a calcium/Vitamin C mix. I consciously think about getting vitamin D outside. (Maybe I should have my vitamin D re-tested now...) I am still 100% gluten-free. My current thoughts on the cause of the problems is some, if not all, of the following: Genetically low zinc uptake, lack of vitamin D, wine drinking (alcohol/sulphites), covid, immune depletion, gastroparesis, dysbiosis, leaky gut, inability to process certain foods I am so much better than late 2023 so feel very positive 🙂    
    • lehum
      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
×
×
  • 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.