Pre Diagnosis Topic #100000000

[IMissBigDirtySandwiches]

Ok, so any help or insight would be appreciated here.

These are the symptoms:

Bloating (painful bloating). I would have a flat stomach before meals, people would be like wow you've lost weight and then after the meal they'd be like...oh right...you look pregnant...

Gas which seemed to be constant especially after eating, Constipation, stomach pains, costochondritis (this really was the worst and was what made me take steps to get diagnosed). Heartburn, acid reflux, GERD. Nerve pains (tingling), Burping, Passing mucus, Having either loose stools with mucus or constipation.(sorry, but I"m sure you're all used to it), no energy. Eating something was immediately followed by sleep or groggyness or general irritatability.

The bloating and the generally feeling huge and uncomfortable any time any amount of food passed my lips was very frustrating. Also going very red faced - This is allergy related I think although god knows what to. I think it's Dairy.

My brother was celiac when he was a kid (diagnosed by a doctor) but according to my mam "grew out of it" (not sure if that's possible?)

I waited until all the tests had been done to test the gluten free thing because the more I read the more I was like "This is me". I stumbled across the Celiac Diva Vblog where she lists her symptoms and it was so similar. I was so sick of being written off as having IBS by my doctor and was not up for popping pills before meals for the rest of my life. So I went gluten free and the results were amazing. My energy returned. My stomach deflated. FINALLY. It was generally looking like celiac or gluten intolerance

So after all this the blood tests were negative. I actually just cried with frustration. The endoscope showed no damage but there was small bowel inflammation. My consultant didn't mention crohns at all because I"d had a colonoscopy 2 years ago and been grand. I'm 25 by the way. So I meet with her in two weeks. I know it sounds strange but I"m praying she'll tell me I"m celiac or at least gluten intolerant. I feel like I already know I am but I don;t want to be plagued with self doubt or told I have IBS again. As far as I know IBS doesn't cause inflammation.

So any thought would be seriously appreciated.

Thank you

[GFinDC]

Hi, welcome to the site.

You have learned one very important thing already, you feel better when you don't eat gluten. That in itself is the real information you need to be healthier. A diagnosis might be "nice" but it won't change the reality that your body does not like gluten and reacts badly to it. Have you gotten the results of the endoscopy? They usually take a couple weeks. The endoscopy should include 5 or more biopsy samples that they will send to a lab for analysis. Celiac damage can be visually observed but it can also be microscopic. It depends on how badly your gut is damaged at the time of the endoscopy.

There are no tests for NCGI (non-celiac gluten intolerance) so if you have that a doctor can't help. The tests for celiac are not perfect and can have false negatives. But your body has reacted positively to not eating gluten and that is not something to ignore. Regardless of what any tests say, you should not damage your body by continuing to eat gluten.

Hopefully your test results will be clear and you will get a correct diagnosis. but you may be one of the many who never get diagnosed but still feel better not eating gluten.

[IMissBigDirtySandwiches]

Thanks for the reply. I got some endoscopy results straight away because they found small bowel inflammation. My mam is actually a lab technician at that hospital and told me the biospsy sample didn't show celiac. I"ve read online that villi damage doesn't necessarily have to be there for you to be celiac but I"m not sure if it's true.

So I guess I'll be off gluten for the forseeable future. Do many celiacs have issues with dairy also?

[GottaSki]

Welcome! Fun screen name

I'll second everything GFinDC said - the tests are not perfect. If your doctor only took one biopsy of the small intestine you could have damage from Celiac Disease that was missed. Regardless you need to remove all gluten from your diet.

Oh --- you do not grow out of Celiac Disease - this misinformation was taught in medical school until very recently. Just over three years ago, my very young doctor said "you probably don't have Celiac Sprue, that is a childhood disease that most people outgrow."

A family history and classic symptoms that improve when gluten free is a darn good reason to remove gluten - especially at 25 - you can start improving your health or wait for symptoms or damage to get worse - they usually do.

And yes, people with Celiac Disease often have a problem digesting dairy.

Good luck!