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SAHM2one

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SAHM2one Contributor

Here are my symptoms.

Seizures as a child

Anemic since birth

low ferritin

low B12

intestinal bleeds until I had my gastric bypass

severe stomach pains

told I had IBS

told I had fibromyalgia

canker sores

joint pain

red blotchy face

Get sick very easy

always tired

leg cramps

irritable

depression

headaches

can't sleep

I had both my gall bladder and appendix removed because of severe stomach pains. I have had an intestinal blockage and a gastric bypass also.

i was tested today for celiac disease by my request and will be going to Duke Hospital in NC on Thursday to see a Hematologist because of the anemia.

In your opinion does this sound like it could be celiac disease to you??


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darlindeb25 Collaborator

Your symptoms fit, it's great you have been tested, you will soon know for sure. Celiac's are foten diagnosed with several other issues before the link to celiac is even thought about. I wish they would think of it first, rule it out, then go on...that would make things so much easier.

Good luck with your tests!

ravenwoodglass Mentor

Sounds like a good possibility. Do remember that AFTER you have done all the testing you desire to do that no matter what the results you should do a dietary trial of the diet to see if it helps. This should be done no matter what the test results say, there are many false negatives on testing so do give the diet a shot. Just be sure to wait until after testing is done to try as the gluten-free diet will impact the testing results. The diet will not effect test results for any disorders other than celiac so if they tell you the celiac tests were negative you have nothing to lose with the trial but the pain.

SAHM2one Contributor

Thank you. I have started to already look into a gluten free diet. Once I have been tested ,and if I am positive my son has been tested, then my family is going gluten free no matter what.

I just ate a bagel and 5 minutes after I ate I was in the bathroom. Since I started to pay attention to what I eat, I notice that this happens a lot after I eat foods that are high in gluten.

Should have my blood results back tomorrow or Friday.

  • 4 years later...
floral Newbie

Just an FYI...only 30 percent of people with celiac get a positive test. Dr. Peter Green states this in CELIAC DISEASE A HIDDEN EPIDEMIC. Granted the book is twenty years old but I don't think things have changed much. People thought that Celiac disease was a rare disease but I think it's just rarely diagnosed. I recently went to a dinner and three people sitting at my table alone all had Celiac disease. What are the odds of that? I believe it's really gotten to epidemic proprotions but I guess that's another subject altogether.

kareng Grand Master

Just an FYI...only 30 percent of people with celiac get a positive test. Dr. Peter Green states this in CELIAC DISEASE A HIDDEN EPIDEMIC. Granted the book is twenty years old but I don't think things have changed much. People thought that Celiac disease was a rare disease but I think it's just rarely diagnosed. I recently went to a dinner and three people sitting at my table alone all had Celiac disease. What are the odds of that? I believe it's really gotten to epidemic proprotions but I guess that's another subject altogether.

FYI, The Op hasn't been on this forum in 3 years

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    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
    • trents
      @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
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