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Chronic Stomach Pain--while Gluten-free


healthynewman

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healthynewman Newbie

Hey All,

I was diagnosed with celiac (blood and biopsy test) 2 years ago, and felt great on a gluten-free diet for one year. I then started having stomach pain (like heartburn) and abdominal discomfort the moved around and that came and went daily. I've had scopes, CT scans, and test for H. pylori and all are negative. Doctors ran out of ideas, other than acid blockers which often made symptoms worse.

I tried going on a simple foods diet to eliminate typical allergic foods (soy, dairy, etc.) and nothing seemed to help. Then the symptoms went away, more or less, for a few months. Now syptoms are back, and even more persistent (daily for over a month). I am super strict with my diet (eating non-allergenic food like rice, broccoli, spinach, sweet potatoes, hormone/ antibiotic-free chicken) and getting no relief. Dinner parties are not so fun, as I bring my own food and don't drink any alcohol or coffee.

I've also tried ranitidine for acid with no results. I feel like stress may play a factor in the symptoms, but not sure. Considering acupuncture and herbal remedies.

Thanks for letting me rant--I am really frustrated. I appreciate any advice.

Kurt

diagnosed 9/06 celiac

biopsy/blood


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Kurt, you may have LOW stomach acid, which obviously acid blockers would make only worse. Try eating more protein and fat for a while, along with very low carbohydrate intake.

Your problem may be that you eat too many high-carb gluten-free replacement foods. They will cause me to have acid reflux as well.

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ShayFL Enthusiast

You could also test with HCL tablets. Take 1 with a protein meal and see if you feel better or no response at all. If you feel better, you can take them for while until your body readjusts. If you get no response, next meal take 2. You will know you have taken too much if your stomach burns a bit and you taste acid. Simply drink some baking soda (1 tsp) in warm water to make that go away.

This happened to me years ago and the HCL was a lifesaver. I had to take 3 with any protein meal. Over time I gradually reduced until I discontinued. No symptoms eating protein.

Do not take with carbohydrate only meals.

ravenwoodglass Mentor

I have been under a great deal of stress lately and started getting really severe pains mostly right sided pain even when I just drank water. I don't know if it would help you but I went back to my digestive enzymes and it helped with the first dose. I tried some pepto, the thing I usually take for stomach pain and it didn't help at all that is why I did a last ditch clutching at straws trip back to enzymes. I was actually surprised that it helped and don't know if it would help you but thought it worth mentioning.

jaten Enthusiast

Healthynewman,

Has your doctor considered performing a capsule endoscopy (pill cam)? Our histories/symptoms are not exact but remarkably similar.

Because of renewed symptoms I had colonoscopy/endoscopy a few weeks ago. The endoscopy biopsy showed sprue damage (villous atrophy) even though I have been strictly gluten free for 2 1/2 years. (Lab work verified that I am successfully gluten free through an absence of antigliadin antibodies at this time.)

Earlier this week, I had a capsule endoscopy so that my dr. could view the 20-25 feet of small intestine that can't be reached with a scope.

Just a thought....

Fiddle-Faddle Community Regular

Not to scare you or anything, but celiacs are at higher risk (especially if undiagnosed for a long period of time) for B-cell lymphoma. Did your doctor already rule that out?

Many people here have issues either on top of celiac, or that cause gluten intolerance, such as Lyme Disease, mercury toxicity, and systemic yeast infections.

The capsule endoscopy sounds like a good idea.

I'm sorry you're not feeling well--hope it gets better soon!

shanluts Apprentice
Hey All,

I was diagnosed with celiac (blood and biopsy test) 2 years ago, and felt great on a gluten-free diet for one year. I then started having stomach pain (like heartburn) and abdominal discomfort the moved around and that came and went daily. I've had scopes, CT scans, and test for H. pylori and all are negative. Doctors ran out of ideas, other than acid blockers which often made symptoms worse.

I tried going on a simple foods diet to eliminate typical allergic foods (soy, dairy, etc.) and nothing seemed to help. Then the symptoms went away, more or less, for a few months. Now syptoms are back, and even more persistent (daily for over a month). I am super strict with my diet (eating non-allergenic food like rice, broccoli, spinach, sweet potatoes, hormone/ antibiotic-free chicken) and getting no relief. Dinner parties are not so fun, as I bring my own food and don't drink any alcohol or coffee.

I've also tried ranitidine for acid with no results. I feel like stress may play a factor in the symptoms, but not sure. Considering acupuncture and herbal remedies.

Thanks for letting me rant--I am really frustrated. I appreciate any advice.

Kurt

diagnosed 9/06 celiac

biopsy/blood

Hey there...any results???

I have been gluten-free for 1.5 years. I have been miserable this past week. Pain, burning, nausea and headache. I have taken Prevacid, Zofran (nauseau) NOTHING helps. I feel weak and fatigued.

I am grasping for straws!

Shannon


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ShayFL Enthusiast

Shannon...could you have picked up a bug?

  • 4 weeks later...
healthynewman Newbie

Hey Shannon,

I've appreciated all of the feedback from many people. I am going to talk with a naturopath here in Portland today and get some guidance. I have limited my diet down to rice, quinoa, brocolli and a couple other items. No luck though. I am taking probiotics and trying other avenues, but I really don't have a solid game plan yet.

Keep talking with others, and arm yourself with info. And be your own advocate when you see doctors. That's my advice for you today. Good Luck and keep positive,

Kurt

Hey there...any results???

I have been gluten-free for 1.5 years. I have been miserable this past week. Pain, burning, nausea and headache. I have taken Prevacid, Zofran (nauseau) NOTHING helps. I feel weak and fatigued.

I am grasping for straws!

Shannon

Katester Enthusiast

I had the exact same problem and still kind of do but it's getting better. My doctor figured out that my body was starving and wasn't getting enough food. My stomach isn't used to having the normal amount of food in it which means whenever I eat anything it has a hard time processing the food. If I eat more than usual, I feel horrible. I don't know if this could be possible for you also but it's just a thought. Ensures have helped a ton. Hope you feel better!

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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