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

Constant Unsettled Stomach No Matter What


AlexandarZ

Recommended Posts

AlexandarZ Rookie

I've had celiac for about 3 years and i have a constant unsettled stomach. When i wasnt diagnosed i was eating gluten obviously because i had no idea, i was 15 at the time but then i got diagnosed and stopped completely. For the first two weeks my stomach was really normal you know? like no stomach aches no random trips to the toilet and no i wasnt eating anything different i was eating everything gluten free nothing out of the ordinary and nothing in specific. After that two weeks my stomach just went down hill like i wasnt eating gluten anymore but i was. Now everyone tells me it takes awhile for your stomach to heal, but im a 18 year old kid and i have to plan my life on how my stomach is feeling. I could eat the same food one night and have a good stomach the next but then eat the same thing then be grounded because i'll have stomach aches and have to constantly go toilet. To put it simply sometimes i get diarrhea for no reason  at all. Everyone says maybe i'm sensitive to other foods and should keep a diary but i eat the same food and feel good then the next day if i eat the same food ill get diarrhea or something or an unsettled, uneasy stomach. 

Sorry for the lengthy post, but please this is ruining my life. I dont care if i have to occasionally watch my friends eat at restaurants while drooling but when i get celiac i was under the impression that when you eat gluten free you will have regular stool and normal bowel movements..... and notice when your about to need to go toilet. This is kind of ruining my life, no doctors can help and yes i've been to dietitians. I would really much appreciate a reply because i don't know what to do. 

BTW: IBS medicines don't work, i have tried celiac enzymes, no improvement.


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



Celiac.com Sponsor (A8-M):



BZBee Apprentice

Did you check your hand soaps and lotions to make sure they're gluten free? What was the last result of your blood tests? Have your antibodies gone down? It could be another intolerance. I know that I'm also lactose intolerant but I can manage small amounts of dairy, but if I have too much I get an upset stomach and the big D. So you might eat a large amount of something your intolerant to on a certain day to give you that reaction. Just a thought.

AlexandarZ Rookie

Did you check your hand soaps and lotions to make sure they're gluten free? What was the last result of your blood tests? Have your antibodies gone down? It could be another intolerance. I know that I'm also lactose intolerant but I can manage small amounts of dairy, but if I have too much I get an upset stomach and the big D. So you might eat a large amount of something your intolerant to on a certain day to give you that reaction. Just a thought.

last time i had a blood test the doctor said the antibodies have gone down so much that he didnt need to schedule another blood test with me. Ive been checked for fructose intolerance, dairy intolerance but results come back saying i'm not either.

frieze Community Regular

your reactions may be more delayed then the time span you have checked.

dilettantesteph Collaborator

In my case, I felt all better just stopping eating bread and Cheerios.  Then I started noticing reactions to lower levels of gluten.  I researched where else gluten might be and I'd feel all better and then start reacting to even lower levels.  Then I'd research more.  This went on for some time until my diet is mainly unprocessed.  If you are like me, you may be reacting to gluten cross contamination.  Are you living at home?  Does your family eat gluten?  Could you bet getting cross contamination there?  Do you eat in restaurants and could cross contamination there be a problem?  Do you eat a lot of gluten-free processed foods?  Small amounts of cross contamination can build up.  

 

Try more produce and unprocessed meats and see if that helps.  I wish you the best.

Juliebove Rising Star

Sorry to hear that.  I can relate.  I am 54.  I have random stomach things and I don't always know what is going on.  But I do know now that I am intolerant to things I never would have dreamed of.  Lovage, cloves, mint, thyme, tarragon, chamomile, coffee...  Plus a whole slew of foods.

 

You might try eating very plain foods for a while.  No seasonings except perhaps for salt and pepper.  Or maybe just salt because I suppose pepper could cause a problem.  Watch any and all cosmetics you use.  Try brushing your teeth with baking soda.  Try something generic like castile soap on your body and hair.  See if that helps.  Then if it does, try adding things back in slowly to see what you react to.

aleshae16 Newbie

For me, next to gluten, I found I don`t digest rice well. Effects hit me up to 48 hours later sometimes. It can be confusing. I also avoid sugar.


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



Celiac.com Sponsor (A8-M):



Brandiwine Contributor

I'm kind of going threw the same thing, I was doing great for awhile and then I would have a problem with a meal that I eat frequently with no problems. I could literally eat a safe meal on Monday and then eat the exact same meal on Friday and be sick for the rest of the week. It's been like this for a couple months, then I started taking B complex and got probiotics from Young Living and so far I have been better. I started thinking maybe it was a deficiency, since Celiac pretty much promises us that. So I looked it up and vit B deficiency can cause upset stomach and D. Since I have been taking these, everyday gets better, my stomach doesn't hurt anymore, no more nausea or D (crosses fingers) hope this helps.

Juliebove Rising Star

I'm kind of going threw the same thing, I was doing great for awhile and then I would have a problem with a meal that I eat frequently with no problems. I could literally eat a safe meal on Monday and then eat the exact same meal on Friday and be sick for the rest of the week. It's been like this for a couple months, then I started taking B complex and got probiotics from Young Living and so far I have been better. I started thinking maybe it was a deficiency, since Celiac pretty much promises us that. So I looked it up and vit B deficiency can cause upset stomach and D. Since I have been taking these, everyday gets better, my stomach doesn't hurt anymore, no more nausea or D (crosses fingers) hope this helps.

Interesting!  I was having problems that seemed to be caused by *excess* B vitamins.  I take quite a few supplements and just kept adding and adding based on things that I read or that people told me to do.  Only after the Dr. wanted to put me on Metanx for numbness, did I take notice.  I can not take it as it contains dairy but it also contains very high levels of B vitamins.  I was particularly concerned about B6 because I know that excess can cause neuropathy, which I already have.  I was like...  Why would he put me on more when I already take so many?  Then I realized that he probably wasn't looking at my chart and didn't know how much I already took.  So I added up the numbers and whoa!  I was taking mega doses of all but B6.  And too much B can cause the same sort of symptoms as too little.  So I stopped taking all of the individual ones except for B12 and only because I take Metformin and that can deplete it.  But I backed down from 1,000 mg to 500.  Dr. had told me to take 1,000 mg daily but...  Again, I don't think he knew of the multi and the B and C Complex.  I do still take those.

 

Then a couple of weeks ago as I was doing up my pills, I mistook the Pantothenic Acid for HCL.  I put it in the morning and night compartments.  But the capsules look the same as many others.  Wouldn't be able to pick them out.  I did look up the dose and it wasn't in the danger range.  But...  My blood sugar was raised for two weeks.  Now I am not taking it and blood sugar is mostly in normal range again.

Brandiwine Contributor

Hmmm, do you take any probiotics? I started the B and the probiotics at the same time. 

Pegleg84 Collaborator

I also sometimes get random problems, like being fine after you eat a perfectly safe meal at home, but feeling rotten after the leftovers, etc. I've been trying to "rotate" my foods somewhat, not eat too much of the same thing at once or the next day. I'm not strict about it, but it does seem to help a bit. I also take digestive enzymes with meals which helps.

 

If you're having problems all the time, then best to look at possible sources of cross-contamination, and then figure out if you might not have another intolerance or something else going on.

 

in any case, good luck!

Juliebove Rising Star

Hmmm, do you take any probiotics? I started the B and the probiotics at the same time. 

 Yes.  I take Culturelle.  The dairy free kind.

AndrewNYC Explorer

i was under the impression that when you eat gluten free you will have regular stool and normal bowel movements..... and notice when your about to need to go toilet.

 

it isn't always so simple.   Try reducing your diet back to the basics and really see from there what upsets your stomach and what doesnt.   For example, starting tomorrow just eat meat.   Plain meat.   Hamburger, no ketchup, no seasoning, no bun, no gluten free bun, no lettuce, no onion.    Eat one for breakfast lunch and dinner.    Feel okay?    The next day you can add potato.    Just plain baked potato.    no toppings, no salt, no chives, nothing.    Add literally one thing at a time back to your diet and see what the tipping point is for you.   

frieze Community Regular

don't worry about the B12, you are not absorbing what is in the multi any way....are you taking it (the plain B12) on an empty stomach?

igorm Newbie

last time i had a blood test the doctor said the antibodies have gone down so much that he didnt need to schedule another blood test with me. Ive been checked for fructose intolerance, dairy intolerance but results come back saying i'm not either.

Feel sorry for you, I have similar problem, may be even worse. I cannot eat anything but rice, potato, meat, bananas, olive oil, and some walnuts. Anything else I try to add causes loose stool in 1 day eventually D. I had negative lactose intolerance test, but cannot eat dairy (even goat milk). I cook everything myself, and do not know what to do next.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,906
    • Most Online (within 30 mins)
      7,748

    Betty t
    Newest Member
    Betty t
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Xravith
      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • 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.