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

I Have Been Gluten-free For 3 Years And I Am Getting Sick...


Janie*

Recommended Posts

Janie* Newbie

Hi! This is my first post. I am 23 and have been gluten-free for 3+ years. After adjusting to the diet I felt better than ever before. Recently, however, I get terrible stomach pains after I eat anything. They feel like the pains I get when I accidentally ingest gluten, but I never intentionally eat gluten and I am very cautious about contamination. I am experimenting with the Paleo diet right now to see if I can discover any other allergies I may have. If anyone has and suggestions/comments or advice, it would be much appreciated. I feel like I did before I was diagnosed with Celiac and it is terrible!


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



Celiac.com Sponsor (A8-M):



AndreaB Contributor

I don't really have any solid advice.

I know gluten, dairy and soy are the top food offenders. I don't know how you feel about doctors but if you cut out foods and still have the same problem you should probably been seen.

It seems any intolerance can cause stomach pain, but it shouldn't be with every meal unless you're eating the same food groups. My daughter is intolerant to (among other things) citrus. She can't handle lemon juice but does ok with orange occassionaly. She gets stomach pain when she eats something she's intolerant to. An intolerance reaction can present as soon as 1/2 hour to as long as 2-3 days. The reaction usually resolves by then. If you are eating an offending food frequently (say dairy) then the reaction would be ongoing. Let's say you have milk with breakfast, cheese with lunch and butter with dinner. If your intolerant to dairy you will have an ongoing reaction since dairy is consumed with each meal. Plug in any food here that's eaten frequently.

Rusla Enthusiast

I would try to eliminate all foods one by one. First take dairy out, if no change take something else out. Keep going until you find out what it is, because of the caseine in dairy it has similarities to gluten reaction.

And welcome to the board Janie.

Janie* Newbie
I would try to eliminate all foods one by one. First take dairy out, if no change take something else out. Keep going until you find out what it is, because of the caseine in dairy it has similarities to gluten reaction.

And welcome to the board Janie.

Thank you all for your advice. I think I will go to the doctor soon if I can't manage to work it out by elimination. Feels good to know there are others in similiar situations..none of my family members have been diagnosed and my friends are all allergy free. Go figure!

AndreaB Contributor

You could also get the ELISA IgE/IgG test. My doctor uses US Biotek. We did that with our family. You can get false positives and well as false negatives with those but it gives you something to start with, if you want to spend the money.

Looking for answers Contributor

I went through a period like this myself. My GI told me to take accidolpulus (sp?) and digestive enzymes and I can't believe how much that has helped out.

Good luck!

ravenwoodglass Mentor

While other intolerances are certainly a possibility you should also be a gluten detective for a bit. Have you changed any soaps or toiletries, changed makeup, taken up a hobby or craft that uses paints, glutes, clays, cements, are you doing any remodeling? Many times when symptoms sneak back in on me it is due to a cross contamination issue with a mainstream product that I thought was gluten-free.

If you need to do an elimination diet the best way to do one is with the guidance of an allergist. Many do them backwards by trying to eliminate one food that may unknowingly be in much other stuff. A true elimination diet starts with skin tests for actual allergies and a questionaire about what you usually eat. Then the doc picks 5 or 6 non reactive foods that will provide all the nutrients you need to start and then a new food is added in pure form one at a time once a week to check for a reaction. It is boring, and time consuming but in the long run can be very beneficial. It can be difficult to find an allergist so don't give up if the first office you call says they can not help you.


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



Celiac.com Sponsor (A8-M):



NoGluGirl Contributor
I went through a period like this myself. My GI told me to take accidolpulus (sp?) and digestive enzymes and I can't believe how much that has helped out.

Good luck!

Dear Looking for answers,

I take acidophillus. I can definately tell a difference when I do not take it. I may have a yeast overgrowth, too. That can really wreak havoc on your digestive system. If you have that, a gluten free diet will only help temporarily, but then you begin feeling bad again. I still am gluten free, but it is not relieving the symptoms as well as it had been the first few months due to the yeast.

Dear Janie,

I am close to your age. I am 24. I just went gluten free about five months ago. I second the acidophillus. The paleo diet could be hard on your system, though. If you are not used to the fiber, especially from the seeds, it can really be rough on your stomach. My doctor wants me to do a rotation diet. She thinks I may have more food sensitivities. Other possibilities include gallbladder problems, or an overgrowth of yeast. For instance, with yeast, if you were on a lot of antibiotics, steroids, or birth control, crave sugar, have PMS, migraines, mood swings, food allergies, and have digestive problems like gas, reflux, diarrhea, constipation, and/or nausea, it is likely.

Sincerely,

NoGluGirl

happygirl Collaborator

Many traditional GIs know little to nothing about other food intolerances, so if yours doesn't, it might be worth it to see an allergist, as some of them are more familiar with intolerances.

Have you had the Celiac blood panel re-run recently to determine if gluten is potentially part of the problem (i.e., hidden gluten). It might be worth it to know if your scores are elevated or normal before you go down another path.

Laura

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,208
    • Most Online (within 30 mins)
      7,748

    juliemt
    Newest Member
    juliemt
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
×
×
  • 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.