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questiongirl

Having Almost Every Symptom But Doctor Says My Suspicions Are Unlikely..

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Hello! I've been having these following issues for months now, but my doctor believes that I could not possibly have celiac disease.

Obvious symptoms:

- Diahrrea and constipation

- Smelly stool

- Bloating (and lots of it!)

- blood on toliet paper from rectum (scary, i know its not celiac related..)

- General discomfort

- Some days having complete loss of hunger/apetite

The less obvious symptoms i have that I only found out were related to celiac after research:

- VERY sensitive teeth (i heard its only in the young, and im under 18 btw dont know if that means young)

- Legs falling asleep ALL THE TIME

- Fatigue

- Possible DH - Looking at pictures on the internet, my rash is no where near as severe. I have the small, red dots all over my body. Larger patches are on buttocks, and groin region, especially between legs (quite unpleasant) but for the ones around my body, they are very spaced out, and not close together like i see in the pictures. For example, theres two close on my neck, then some on the back of the neck, then about three dots on my chest... not really 'rashy', and they are itchy but not as severe as i've heard them being described

One thing though is, I haven't lost much weight. I'm about the same as I've always been, but I just look bigger with my insane bloating :(

Also, some days i feel alright. Like now and then i'll have a full meal, and ill be ok. The only really, really relevant symptoms which are always constant is the bloating, and constipation/diahrea

Ok so even with these things, my doctor ruled out celiac and had me do the barium test to search for an ulcer, which i did not have. Does it sound like celiac to you guys?

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Yep. You either need to find another doctor, try going gluten-free for a while, or both. I don't know WHY so many doctors have their heads in dark places, but your experience is pretty common. Look around the forum and read read read. You will see that you're not alone, get great advice, and lots of understanding.

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Ditto to what Bartfull said.

Also - many of us gained weight when our symptoms came to a head, so not being underweight/thin is not useful in terms of a doctor trying to rule out celiac.

From your post, it sounds like he's just running with the theory of you having an ulcer...well, what about your rash? Is he ignoring that too? Why is he so sure it's NOT celiac??

Yay for you for finding this forum - please consider either taking more information to your doctor and asking for him to do the blood tests for you (remembering that there can be false negatives), or perhaps finding a more knowledgeable doctor. Good luck. Sorry you're having such scary symptoms.

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Most doctors are pretty ignorant about celiac. Unless you are an emaciated 6 yr old boy, they pretty much insist you can't have it.

But...you are the boss. Go back and INSIST on a full celiac panel (print the full list from this website- few drs will do the correct tests if you don't)

Do NOT stop eating gluten until all tests are done. Once the tests are done, regardless if it is positive, go gluten-free for a few months. Gluten intolerance is very common and won't show up on a test. You will likely find relief soon!

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Everything in your post sounds exactly like me. I am overweight but look bigger because of bloating. I ignored most of my symptoms for years because I assumed they had nothing to do with each other. I have sensitive teeth as well.

Up until recently (Im 35 now) I have only ever had one cavity in my life and it was a small one. Now, I have several all of a sudden.

I get canker sores frequently.

I would get another dr. I switched my dr 3 times until I found one who listened to me when I told her how I felt. The other 2 just wrote me prescriptions. I dont want to be on meds..I just want to know WHY I feel like this.

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You will learn (as you read more and more on this forum) that celiac disease can manifest itself in many different ways. Some people have what doctors consider the "typical symptoms", some people have very weird, seemingly unrelated symptoms, while some people have no symptoms at all. I didn't think I had many symptoms as I was slightly overweight and felt okay most of the time, but after a week of being 100% gluten-free eating only whole, unprocessed foods, the daily migraines I had been suffering daily for 2+ years were gone and I had that "OH, this is what it should be like" moment when I used the restroom (sorry, TMI). Since going gluten-free a year ago after positive blood work and biopsy, I have lost 15 pounds and feel great most of the time. Unfortunately, when I do somehow get cross-contaminated, I get more sick than I ever did before I went gluten-free.

I would get tested, and if the test comes back negative, go gluten-free anyway. Do it 100% though. And by that, I mean only unprocessed foods. Many of us (myself included) can get glutened by food labeled "gluten-free" so I would stick to produce, eggs, and meat for awhile to see if symptoms improve. Also, avoid dairy for awhile too (I didn't have this problem, but apparently many celiacs can't digest dairy until completely healed).

It's really stressful figuring out what the problem is, but it will be worth it once you start feeling better. It could take months/years to heal, but hopefully you will be like me and notice improvements in just a few days.

Good luck!

-Caroline

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