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Chronic Stomach Pain--while Gluten-free

healthynewman

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healthynewman Newbie
healthynewman
Posted

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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Ursa Major Collaborator
Ursa Major
Posted

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
ShayFL
Posted

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
ravenwoodglass
Posted

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
jaten
Posted

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
Fiddle-Faddle
Posted

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
shanluts
Posted
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
ShayFL
Posted

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

  • 4 weeks later...
healthynewman Newbie
healthynewman
Posted
  • Author

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
Katester
Posted

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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      Pain in the right side of abdomen

      By knitty kitty · Posted

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    • Aretaeus Cappadocia
      1 Year Elimination Diet journey

      By Aretaeus Cappadocia · Posted

      I don't know about this. Here's how I make kasha: boil water in a pot add the kasha, stir to mix, turn heat down to a gentle simmer for ~10 min, maybe 15, until tender remove from heat and serve There are lots of variations if you wish, like adding salt and butter. One variation that is really tasty, but kind of a pain, is to mix the dry kasha with a beaten raw egg, heat the dry kasha/egg mixture in the pot for a couple of minutes (to coat the kasha and cook the egg), then add boiling water and finish like the "basic" recipe above. I seldom have the patience to do all of that, though.
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    • Aretaeus Cappadocia
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      By Aretaeus Cappadocia · Posted

      I don't clean the kasha. It does take more than a minute but less than half an hour. However I understand the need for efficiency in the morning routine. I am not familiar with the lemon thing. Another one to consider is quinoa (I buy Kirkland, labeled gluten free). It is probably better to rinse the quinoa before cooking. I don't notice it myself but a lot of people don't like unwashed quinoa because of saponins that are removed by a rinse. All of these are reheatable if you want to make a larger amount ahead of time. Also, it may be possible to use the "overnight oats" strategy with some or all of these, but I have to say I never even thought about it until writing this response.
    • Aretaeus Cappadocia
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      By Aretaeus Cappadocia · Posted

      I like the Wolff's brand coarse kasha in the grocery store, but I also like the Azure Standard products (AzureStandard.com) for buckwheat, amaranth and other ingredients. The Wolff's package in my pantry is labeled "gluten free". Azure says that their packaging plant has an allergen control program but almost none of their products are labeled gluten free. I have been relying on Azure a lot for my gluten-free diet and the global outcome has been good but I never know for sure for any given product. I eat something I bought from them pretty much every day. (wish I could tell you something more definitive) Full transparency: I was diagnosed with celiac by antibody test (10x the threshold) and by biopsy, and now my antibody levels are 1/10 of the threshold, so my diet appears to be very gluten safe. However, I never had any clear acute symptoms so I never know for sure when I'm consuming gluten.
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