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Could This Be Celiac?


rsfc

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rsfc Newbie

For about the past 3 months I have these symptoms. I am male, 34. They are chronic but it seems I have better days and worse days where things flare up:

 

 

it all started with back pain and stuff that felt like a urinary tract infection (tested negative) it progressed to the following:

 

Loose, soft very dark stool

Just once I had a very bloody (red) stool

Usually a bit constipated and then go a lot when I do go.

Urine seems to be more bubbly/foamy than I remember.

Low abdominal/pubic pain (usually in the front or back sides, below the belly button). The pain usually accompanies going to the bathroom (before or after or both). Sometimes pain is present sometimes not at all.

Trouble breathing that may be associated acid reflux (my guess). It's linda like asthma (which I have) but kinda not.

infrequent sore throat

infrequent night sweats

When I am having the breathing issues my skin on my face, shoulder and back tends to feel flushed, tight, sensitive. Sometiems get like a hot flash sensation when it is at its worst.

Sometimes feel light headed, exhausted.

Alcohol seems to make it worse.

 

The main things that really frustrate me are the trouble breathing and the weird stool. It's obvious they are all related and all get worse in conjunction with one another.

 

I've been to the doctor multiple times, she thought H pylori/ulcer.

did lab work for h pylori twice (one was a false positive/borderline, the second was negative).

Had basic blood test, normal.

Had endoscopy to look for ulcer and test for pylori, nothing wrong.

I've also had a chest x-ray for breathing, nothing

and a kidney scan because I have a family history of PKD, nothing

 

I'm starting to get frustrated about going to the doctor, it is costing me a lot of money. No answers.

 

My grandmother has Celiac disease. I've had asthma all my life which I read can be related. When I google my symptoms things like celian, crohns, IBD, and even colon cancer show up. I'm frustrated and getting burnt out both by the symptoms and no diagnosis.


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Herreralovv Rookie

The only way is go gluten free for at least a month, and see if u feel better. I know its hard and frustrating that no doctor really knows whats going on. Ive been there, one doctor suspected celiac, but i aint have the money to pay for a boipsy, so i just went gluten free and felt better. And now im with a new doctor that did bloodwork for celiac.

cyclinglady Grand Master

You have to be eating gluten for weeks before taking a complete Celiac blood panel.    Here's a link that lists the specific tests for celiac disease:

 

Open Original Shared Link

 

It would be worth testing if your Grandmother had Celiac Disease.  

notme Experienced

i got tested to rule out other things (like crohns, ulcer, etc) at the same time my doc was looking for my celiac dx.  cyclinglady is right - if you want an accurate test, you need to be eating gluten before you get tested, unfortunately.  i made the same move (going gluten free before i got tested - i was skeleton like and it was the last thing i was going to try before giving up and just dying..)  and my blood test came back negative.  my doc did not put me back on gluten for the endoscopy because i was gaining healthy weight (2lbs a month) and she didn't want to take a chance on me being sick/losing more weight.  she took into consideration my positive response to the gluten-free diet, which is also an indicator of celiac.  combined with visual damage to my intestines/digestive tract, she made her dx.  

 

your grandmother has it - it's genetic - there's a good chance you are on the right track.  i would get my vitamin levels checked, too :)  while you're at it :)

defeatwheat Rookie

     IGA/TTG is the test you are looking for. I got tested for half of it not the whole thing and ended up taking years more to get diagnosed. You need to be on a wheat based diet when you have the test. I had a biopsy and had pizza when coming out of anesthesia. It was the last wheat based pizza I ever ate. I'm feeling much better once diagnosed and following the diet. Celiac is genetic so there is a fair chance it is the culprit. Don't quote me but I think your chances are around 1/5 of testing positive? Anyway my dad had Celiac and so far I am the only child to have it out of five although I think all my siblings have stomach issues of some kind.

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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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