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Possible Gluten Sensitivity?


viper

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viper Newbie

I'll try and keep this short.  I was diagnosed with IBS a long time ago and several things were always tried with little to no success.

 

About 3 months ago I started having lots of visible shaking and feeling fluish all over, with nausea and the usual ibs diareah.  Including some sweating episodes where I would just sweat profously mainly on my face.

 

After several visits to the ER and multiple rounds of Psychicatric drugs, we started doing some tests.  One of the thoughts was Celiac.  So I went gluten free.  The Drs did the blood test with not much to show for it.  I'm still trying to get a copy.  After about 3 weeks I finally got an endoscopy done.  I had been gluten free at this point for that period of time if not longer.  The response I got was Mast cells were slightly elevated in my intestinal tract and that the villi didnt show signs of damage.  The GI tells me that I can start eating gluten again when I feel up to it.  I tried eating gluten this thanksgiving with my family (stuffing and apple pie).  after about 3 to 4 hours of eating I "crashed" started flushing, sweating, and shaking all over again.  3 days later I felt good this morning but feel very run down and "shaky" like i have low blood sugar tonight.  Even though I know if I test it I wont have low blood sugar.  I've tried to keep eating healthy foods I havent touched glueten again for those days.

 

Do you guys feel like this could be Gluten Sensitivity?  Is it usual for the effects to linger around so much and treat you like a roller coaster where part of the day you feel good then part of the day you fell like your going to pass out?

 

Vip.


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cyclinglady Grand Master

The only sure way is to stick to the diet for more than six months.

I am formally diagnosed but my husband is not. He has been gluten free for 12 years at the advice of his GP and my allergist.

Yes. You can feel good and then feel awful in just a few minutes. Getting glutened, for me, can last a week or so.

I hope you find relief! This forum has tons of information.

viper Newbie

So Sunday night 72 hours after ingestion of gluten i developed a hives type of rash.  It got worse last night and started lightening up this morning a bit?  Has anyone had this latent of symptoms of a rash or should I be looking for another antagonist of my symptoms.

cyclinglady Grand Master

Was it insanely itchy?  It could be DH, but I'll defer to those who have DH.  They are the experts.  

WestCoastGirl Apprentice

A rash to me usually says "allergy," or possibly hives, unless it's DH. Is it both intensely itchy and painful?

 

I think you know you're having some reaction to gluten - you've just proved that to yourself. Whether or not it's specifically celiac, it seems gluten and you don't get along. So even without a DX, personally, I'd remove gluten from my diet.

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      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
    • trents
      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note: "Total IGA" goes by other names as well. I will include a primer on celiac disease antibody testing which does a good job in covering the nomenclature variations connected with the various tests. Elevated IGG scores can certainly indicate celiac disease but they are more likely than elevated IGA tests to be caused by something else.  
    • GlorietaKaro
      Thank you— yes, valid and essential— The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it.    There are many, probably most people in my area of my age and gender, who avoid gluten, but many just avoid it casually— eating the occasional plate of wheat pasta or a delicious-looking dessert, or baking cookies with wheat flour for gatherings.  That is not an option for me. I don’t eat other people’s cooking or go to restaurants that do not have strict cross- contamination procedures. It can be boring and lonely, and people do look at me as if I am being a bit dramatic but weeks of symptoms after a single small exposure has taught me to respect my experience.    Thank you very much for your response— sometimes I just need to hear that I am not crazy—
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