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

My Stomach Hates Me


Ginger38

Recommended Posts

Ginger38 Rising Star

I have really been trying to watch the gluten and I don’t know if it’s just still intestinal damage causing my issues or I’ve messed up or what is going on, but my stomach hates me. I have had a lot of stomach pain and bloating lately and lots of diarrhea and urgency that has caused accidents, so embarassing. I don’t want to get in to much detail bc I don’t know what is acceptable here but based on bowel colors it appears to be gluten. I just don’t know what to do anymore. I feel like going back to just eating whatever bc what’s the point??  We are supposed to be going out of town on a trip in a few days and I’m really dreading it


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



Celiac.com Sponsor (A8-M):



LCAnacortes Enthusiast

I know your pain - I had the same problem and still have it sometimes.  The accidents are awful.  You get 2 seconds to make it to the bathroom. Not fun. Dairy can be a problem too - it can cause diarrhea/urgency.  And I was using open jars of jam, relish, mayo and soft butter among other things before I realized they were also contaminated.  All you have to do is double dip - spread something on regular bread and go back to get some more and it's contaminated and that can cause major issues. Your sponge can be contaminated and eating out can cause issues.  I am also supplementing - B vitamins and others because vitamin deficiencies were causing other issues for me. You are not alone. Hopefully things get better soon.   

Ginger38 Rising Star
On 7/9/2022 at 8:59 PM, LCAnacortes said:

I know your pain - I had the same problem and still have it sometimes.  The accidents are awful.  You get 2 seconds to make it to the bathroom. Not fun. Dairy can be a problem too - it can cause diarrhea/urgency.  And I was using open jars of jam, relish, mayo and soft butter among other things before I realized they were also contaminated.  All you have to do is double dip - spread something on regular bread and go back to get some more and it's contaminated and that can cause major issues. Your sponge can be contaminated and eating out can cause issues.  I am also supplementing - B vitamins and others because vitamin deficiencies were causing other issues for me. You are not alone. Hopefully things get better soon.   

Thank you.
 

So how long have you been gluten free and how long did it take the accidents to sort of resolve? It is awful. I was taking Imodium all the time but I’m not sure if I should be doing that.

I never thought about jars of things being an issue. We do eat out quite a bit but I do get gluten free but maybe it doesn’t really matter …

 

LCAnacortes Enthusiast
9 hours ago, Ginger38 said:

Thank you.
 

So how long have you been gluten free and how long did it take the accidents to sort of resolve? It is awful. I was taking Imodium all the time but I’m not sure if I should be doing that.

I never thought about jars of things being an issue. We do eat out quite a bit but I do get gluten free but maybe it doesn’t really matter …

 

Since early May 2022.  I just learned that we had a major celiac gene in our family and did some research and then went gluten free but boy - I mess it up all of the time.  There are a lot of ways that you can contaminate what you're eating.  We had to buy a new toaster. Your hair products and some supplements might have wheat in them. It's crazy. Things have not totally resolved yet. But since the beginning of May, I have only had a couple of blow outs.  And - way fewer "hurries".  Before I went gluten free - I would have a couple of blow outs a week - and I had stopped leaving my house because I couldn't be that far from a bathroom.  I didn't know what to eat - it was awful. Most of the issues I have had since going gluten free were caused by cross-contamination - using the contaminated relish and stuff like that. I knew where I messed up.  I was better almost immediately - meaning much fewer hurries.  My bathroom habits looked like it was before things got so bad. But I had to tell my body to calm down. One twitch and I'd go running and that wasn't needed anymore.  I should mention that I haven't been officially diagnosed.  I don't want to resume eating gluten to test for it. And - I am still having a bit of an issue - so it looks like I'll be eliminating dairy too. A lot of celiacs have problems with both. 

Ginger38 Rising Star
On 7/11/2022 at 8:44 PM, LCAnacortes said:

Since early May 2022.  I just learned that we had a major celiac gene in our family and did some research and then went gluten free but boy - I mess it up all of the time.  There are a lot of ways that you can contaminate what you're eating.  We had to buy a new toaster. Your hair products and some supplements might have wheat in them. It's crazy. Things have not totally resolved yet. But since the beginning of May, I have only had a couple of blow outs.  And - way fewer "hurries".  Before I went gluten free - I would have a couple of blow outs a week - and I had stopped leaving my house because I couldn't be that far from a bathroom.  I didn't know what to eat - it was awful. Most of the issues I have had since going gluten free were caused by cross-contamination - using the contaminated relish and stuff like that. I knew where I messed up.  I was better almost immediately - meaning much fewer hurries.  My bathroom habits looked like it was before things got so bad. But I had to tell my body to calm down. One twitch and I'd go running and that wasn't needed anymore.  I should mention that I haven't been officially diagnosed.  I don't want to resume eating gluten to test for it. And - I am still having a bit of an issue - so it looks like I'll be eliminating dairy too. A lot of celiacs have problems with both. 

Yeah I haven’t been officially diagnosed but have positive antibodies and definitely improve when I am on a strict gluten free diet. I messed up bad for a longer period time recently and it seems like this time around the healing process is going much much slower. I’m still having all kinds of issues. Maybe I’m getting it somewhere else too that I’m not aware of. Eating out is a nightmare- bc I’m sure even if you order gluten free there’s cross contamination. We are getting ready to go out of town and I’m pretty much dreading it bc I haven’t gotten completely well since this last round. And even more depressing I feel / look like I’ve gained 20 pounds. I don’t know what’s going on with me. I usually take Imodium as a precaution but I’m not sure that’s healthy long term, but I don’t want to have issues out in public🤦🏼‍♀️

LCAnacortes Enthusiast
14 hours ago, Ginger38 said:

Yeah I haven’t been officially diagnosed but have positive antibodies and definitely improve when I am on a strict gluten free diet. I messed up bad for a longer period time recently and it seems like this time around the healing process is going much much slower. I’m still having all kinds of issues. Maybe I’m getting it somewhere else too that I’m not aware of. Eating out is a nightmare- bc I’m sure even if you order gluten free there’s cross contamination. We are getting ready to go out of town and I’m pretty much dreading it bc I haven’t gotten completely well since this last round. And even more depressing I feel / look like I’ve gained 20 pounds. I don’t know what’s going on with me. I usually take Imodium as a precaution but I’m not sure that’s healthy long term, but I don’t want to have issues out in public🤦🏼‍♀️

I am so sorry.  I have definitely been on that road. I have a change of clothes with me at all times. I haven't bothered to take Imodium or whatever because it didn't seem to help. I don't eat out much and I tell my server I am gluten free so no croutons etc. Then I take notes on how it went.  If we did okay then I go there again. If not - then I don't. If you are sharing food with others - they need to get on board to a point anyway. Meaning don't touch the lettuce after touching bread - or the lettuce is now contaminated.  The 20 lbs could be water retention  I still deal with that too but it has been better since going gluten free.  Vitamin B1 (Thiamine) supplementing could help with that. Hopefully it helps to know you have friends right there in that boat with you.

Ginger38 Rising Star
On 7/13/2022 at 3:00 PM, LCAnacortes said:

I am so sorry.  I have definitely been on that road. I have a change of clothes with me at all times. I haven't bothered to take Imodium or whatever because it didn't seem to help. I don't eat out much and I tell my server I am gluten free so no croutons etc. Then I take notes on how it went.  If we did okay then I go there again. If not - then I don't. If you are sharing food with others - they need to get on board to a point anyway. Meaning don't touch the lettuce after touching bread - or the lettuce is now contaminated.  The 20 lbs could be water retention  I still deal with that too but it has been better since going gluten free.  Vitamin B1 (Thiamine) supplementing could help with that. Hopefully it helps to know you have friends right there in that boat with you.

Thank you! I probably need to start keeping a change of clothes with me. It’s so hard. I never thought about cross contamination in things like jelly, salad dressing, peanut butter etc. T have started trying to take a B1 supplement but sometimes it makes me nauseated. 
Yes it’s helpful to have people who understand 


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



Celiac.com Sponsor (A8-M):



RMJ Mentor
On 7/9/2022 at 4:55 PM, Ginger38 said:

I have really been trying to watch the gluten and I don’t know if it’s just still intestinal damage causing my issues or I’ve messed up or what is going on, but my stomach hates me. I have had a lot of stomach pain and bloating lately and lots of diarrhea and urgency that has caused accidents, so embarassing. I don’t want to get in to much detail bc I don’t know what is acceptable here but based on bowel colors it appears to be gluten. I just don’t know what to do anymore. I feel like going back to just eating whatever bc what’s the point??  We are supposed to be going out of town on a trip in a few days and I’m really dreading it

You say you’re really trying to watch the gluten, but you just posted on another thread that you eat the toppings off of a gluten-containing pizza crust.  You clearly need to be much more careful about gluten contamination.

Ginger38 Rising Star
3 hours ago, RMJ said:

You say you’re really trying to watch the gluten, but you just posted on another thread that you eat the toppings off of a gluten-containing pizza crust.  You clearly need to be much more careful about gluten contamination.

Thank you, I’m still learning and clearly have a lot to learn. Trying to figure out what I’ve been doing that I shouldn’t be doing. Sounds like peeling skin off chicken and toppings off pizza is not a good idea 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,964
    • Most Online (within 30 mins)
      7,748

    Cbear
    Newest Member
    Cbear
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • 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.