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Benefit Of Testing


4boys1mama

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4boys1mama Newbie

Alright, here we go. My first post! A few months ago, my life turned completely upside down. (Husband went to rehab, lost his job, I went back to full time work after 6 years of being a SAHM, have four kids, and also attend college.) So major upheaval/stress. I started having all sorts of digestive issues and strange symptoms and kept thinking "Wow, I'm really just falling apart."

-Nearly 30lb weight gain within the span of a few months

-Incredible amounts of bloating.

-GAS. Either super stinky (sorry, TMI) or gets trapped inside my body and can be felt radiating into my shoulders.

-No regularity or predictability in bowel movements. Alternating between constipation and diarrhea.

-Dry, itchy skin, including what always feels like a vaginal yeast infection but isn't

-Limbs always falling asleep, so weird

-Fatigue

-Inflamed gums, teeth chipping

Anyway, I went to the doctor for my yearly physical and explained to her that I felt like something was really wrong with me. Maybe thyroid issues because I had experienced a bout of postpartum hyperthyroidism a few years ago. She checked me out and pretty much just laughed at me saying that "it was just stress" because after all, I have 4 kids, work, and go to school full time. She did some blood panels and everything was fairly normal except the following:

-Slightly elevated bilirubin (this has been consistent for at least 5 years)

-Super low total cholesterol (this is also consistent, and there is NO reason for it, considering a few weeks ago I was eating, well, like an obese person.

-VERY Vitamin-D deficient (which she just blew off as me being a lifelong Seattle-ite.)

After all that, my doctor concluded that my symptoms are stress related and told me to come back in a year. I've thought about the possibility of Celiac disease for several years. In the last few weeks I've reduced my gluten consumption and when I DO eat it, I feel an immediate onset of gas, bloating, pain. I feel like I want the testing for my own personal confirmation and to rule out other causes, but I can't even IMAGINE going back to full gluten in order to get an accurate test result. So tell me--what were your reasons for testing, or for NOT testing? What are the benefits and/or the downsides?


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jtolpin Newbie

Alright, here we go. My first post! A few months ago, my life turned completely upside down. (Husband went to rehab, lost his job, I went back to full time work after 6 years of being a SAHM, have four kids, and also attend college.) So major upheaval/stress. I started having all sorts of digestive issues and strange symptoms and kept thinking "Wow, I'm really just falling apart."

-Nearly 30lb weight gain within the span of a few months

-Incredible amounts of bloating.

-GAS. Either super stinky (sorry, TMI) or gets trapped inside my body and can be felt radiating into my shoulders.

-No regularity or predictability in bowel movements. Alternating between constipation and diarrhea.

-Dry, itchy skin, including what always feels like a vaginal yeast infection but isn't

-Limbs always falling asleep, so weird

-Fatigue

-Inflamed gums, teeth chipping

Anyway, I went to the doctor for my yearly physical and explained to her that I felt like something was really wrong with me. Maybe thyroid issues because I had experienced a bout of postpartum hyperthyroidism a few years ago. She checked me out and pretty much just laughed at me saying that "it was just stress" because after all, I have 4 kids, work, and go to school full time. She did some blood panels and everything was fairly normal except the following:

-Slightly elevated bilirubin (this has been consistent for at least 5 years)

-Super low total cholesterol (this is also consistent, and there is NO reason for it, considering a few weeks ago I was eating, well, like an obese person.

-VERY Vitamin-D deficient (which she just blew off as me being a lifelong Seattle-ite.)

After all that, my doctor concluded that my symptoms are stress related and told me to come back in a year. I've thought about the possibility of Celiac disease for several years. In the last few weeks I've reduced my gluten consumption and when I DO eat it, I feel an immediate onset of gas, bloating, pain. I feel like I want the testing for my own personal confirmation and to rule out other causes, but I can't even IMAGINE going back to full gluten in order to get an accurate test result. So tell me--what were your reasons for testing, or for NOT testing? What are the benefits and/or the downsides?

Im new to Celiac, not to food allergies though.... To me, if you know eating gluten causes problems, dont eat it... If you feel better, go with it, kwim? good luck!!!

nvsmom Community Regular

I feel like I want the testing for my own personal confirmation and to rule out other causes, but I can't even IMAGINE going back to full gluten in order to get an accurate test result. So tell me--what were your reasons for testing, or for NOT testing? What are the benefits and/or the downsides?

I want the testing done so it will be easier for me to stick to a diet change (I'm not very good at that) and to rule out other health problems. I also want to be sure because this could affect my children and my mother (who has had (supposed) heat rashes and stomach issues for years.

I don't have my results back yet. I've done a home tTg test, which was slightly positive, and I'm expecting a positive EMA and another tTg test... not sure what I'll do if it's a definite negative.

Best wishes.

Nicole S

KMMO320 Contributor

I want the testing done so it will be easier for me to stick to a diet change (I'm not very good at that) and to rule out other health problems. I also want to be sure because this could affect my children and my mother (who has had (supposed) heat rashes and stomach issues for years.

I don't have my results back yet. I've done a home tTg test, which was slightly positive, and I'm expecting a positive EMA and another tTg test... not sure what I'll do if it's a definite negative.

Best wishes.

Nicole S

I went through testing only to have everything come out negative. I KNOW what I feel and I went gluten-free and felt amazing. My Dr said she took TWO samples during my biopsy, which is nothing..she should have taken at least 4!! I am so mad, I cant retake the Endo because it cost me 1000 out of pocket!!

So I am at a crossroads..do I just eat gluten because she says I can and she is a dr and Im not, and all my symptoms are in my head..or do I go gluten free? I am struggling with it. I really feel like I am going crazy and its all in my head. and I just dont know what to do anymore. :(

MitziG Enthusiast

Get the testing done. That low cholesterol is a big red flag. And if the testing comes back negative, go gluten-free for awhile anyway. I bet you will get relief.

MitziG Enthusiast

Oh, and extreme stress like what you have been under can be a trigger for celiac.

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  • Posts

    • Fayeb23
      Thank you that’s really helpful, hopeful won’t have to have a biopsy.
    • RMJ
      That means the normal range (i.e. not celiac disease) would be a result less than 14.99.  Your result is WAY above that. Some gastroenterologists would diagnose that as celiac disease even without a confirming biopsy because it is more than ten times the top of the normal range.
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      Thank you. These were the results TTG ABS NUMERICAL: > 250.0 U/mL [< 14.99]  Really don’t understand the results!
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      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
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