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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
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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