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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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    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
    • Levi
      When I was first Dg’d I researched like mad. One thing I remember from then, which may have changed with advancement in medical science, is that Coeliac is a first generation disease which means either you or your husband need be Coeliac for your daughter to have inherited it. Far as I know, and I’m not a scientist just a victim, the amount of gluten (wheat, rye, or barley) one consumes does not cause a person to contract Coeliac Disease. So if neither of you as her biological parents have Coeliac then your daughter cannot pass any blame should she contract this horrific disease.     It’s humbling, and sometimes I believe GOD allows such as these autoimmune diseases for those who need it most. 
    • Lori Lavell
      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
    • Scott Adams
      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
    • trents
      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
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