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Please Help! Bad Stomach Pains


Omck

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Omck Newbie

Hi all I am new and am feeling glad I have a community of people who will understand my issues better! A bit of background: I used to eat low gluten in my early twenties for health benefits and then after I had my second child, I started suffering extreme lethargy, nausea and headaches. As time went by I was trying to pinpoint the cause but only considered gluten to be a possibility after my mother came over one night and made me white pasta, and I had horrible stomach pains the whole night. It felt like food poisoning without the nausea or diarrhea. I continued to eat gluten occasionally, and probably got cross contaminated a million times, and my health was getting worse. I was experiencing tingling in my extremities, rashes on my elbows, fatigue, head aches, insomnia, flip flops in my stomach, optical migraines (when you see a zig zag patch in your vision field which grows till you can barely see and then you get a huge headache after), brain fog to the point where I felt like I couldn't hold a conversation or make eye contact etc. over this last 2 year period it seems my symptoms were ever changing but the one thing that stayed the same was it only happens when I have gluten. I had the celiac blood test done 2 times but the doc didn't tell me that I had to have it in my system first and I had already been gluten free for a few weeks both times. It seems that I am so sensitive.. One time I bit into a white pasta noodle I was cooking and spat it out immediately and I was sick the next day. My big question for you however, is for the last year I have had about 6-7 unexplained extreme stomach aches. It is excruciating pain above my belly button that normally happens at night and last from 3-5 hours. It feels like the worst food poisoning but without the nausea and diarrahh and I get chills, dizzy and feel dehydrated. Last time it was so bad I went to the hospital and they found that my white blood cells were high but when I did an ultrasound the only thing they found was poly cystic ovary syndrome, but not gall bladder or pancreas issues like my doc suspected. Almost every time I can recall having these stomach aches, I had been glutened within a week before. Does this sound like celiac disease? Has anyone else experienced this? It seems to have some delayed response, as usually the first symtpom is light cramps in the evening, then some insomnia with loud tummy gurgles, then the next day is feel like s$#& lethargy don't want to do anything or see anyone, and finally it's the day after that these stomach aches happen. Please help me if you have any leads whatsoever, my health is so precious to me especially since I have 2 little kids under 4 :( I would do anything to figure all this out.

  • 2 weeks later...

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notme Experienced

your doctor can test you for celiac, but you have to continue to eat gluten for the testing to be accurate.  many of your symptoms could be attributed to celiac/ngci, but they could also be symptoms of other things.  i hope you find some answers :)

nvsmom Community Regular

I would advise seeing your doctor about it and getting tested for celiac disease too. The doctor may have other ideas as to the cause - we're biased around here.  LOL ;)

 

I have had extreme stomach aches that made me feel almost like I was going into shock: dizzy, faint, cold, clammy, etc.  I never did see the doctor about it... it hasn't happened for a few years now.

 

Best wishes.

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      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless chocolate cake dedicated gluten-free it was out of this world. 
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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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