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Could I Have Celiac?


jewel1

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jewel1 Newbie

Quick history:

I've had stomach problems since Junior High (now 33)..usually the worst about 30 minutes to 1 hour after eating. Usually, symptoms are worse after eating out vs eating at home.

Main symptoms are: diarrhea, gas, stomach cramps, naseua/lightheadedness and beofre the stomach troubles start in earnest (meaning, having to run to the bathroom) I feel very flushed and hot all over. My husband would always get frustrated that I was spending my life running to the bathroom.

One doctor told me I had IBS a long time ago, and another tested me for hypoglycemia...nothing conclusive. I've been food allergy tested and possibly am slightly sensitive to garlic, peanuts and tomatoes, but it wasn't very conclusive either.

I defintiely have issues with Lactose intolerance/dairy, but not all the time. It seems to come in clumps...like 3 bad months, then 4 good months.

I'm always tired/lethargic, which is really annoying. I tend to be overweight...not under.

A year ago I started a low-carb diet where I tend to avoid most flours, oats etc and saw a HUGE improvement in my symptoms. I still have an episode once in awhile, but rarely (though I still have issues with being tired off and on).

Do you think this could be celiac disease? I've seen the symptoms lists and they're so long and varied that it confuses me. :) The one symptom I didn't really see mentioned was that intense feeling of heat/getting flushed prior to an outbreak of symptoms.

Any ideas? I'd love to hear your opnions. Thanks for all your help.

--Julie


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lesliew Newbie

Wow, you sound exactly like me, same symptoms, age and everything. I even found out the same way! I have not had the test for Celiac, and have only been attempting to live wheat free for a short time (very unsuccesfully I might add, lol). I have had the flushing before an episode before too. I could have written your post! I've had the hypoglycemic episodes too, just not the lactose... Right now, I am just assuming I am gluten intolerant and not celiac, I will see if my doctor recommends having hte test. My sister has seen improvement off wheat also, so that makes me wonder tho.....

flagbabyds Collaborator

If you are going to get tested (which I think you should) go back off hte low-carb diet because then the test will be bad, yes you could very welll be celiac, everyone's symptoms are different

Guest jhmom
Main symptoms are: diarrhea, gas, stomach cramps, naseua/lightheadedness and beofre the stomach troubles start in earnest (meaning, having to run to the bathroom) I feel very flushed and hot all over.

I had the very same symptoms plus a few more ;) . Of course mine always hit me while driving to work in the mornings ;) . I think you should look into getting tested either through your GI doc with blood tests or through Open Original Shared Link which is a stool panel test and is more sensitive than blood and more accurate.

I do hope you find some relief soon as I know exactly how you are feeling.

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    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
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