What Could My Problem Be?

[Galaxianz]

I've had terrible problems with gas since I can remember. With it comes terrible pain - from dull aches in the intestinal area to strikingly uncomfortable pains in my throat. I assume it is gas as the throat pains subside when I lie down with my rear in the air.

As a child I can recall episodes where I'd be in so much pain that I'd be on the floor, then came a ton of gas.

I've just had another episode where it got so bad. I am 21 years old and no one has been able to help me.

I'll summarize my problems in key points:

- I cannot burp. Rarely (like once every 6 months) I can sit in a certain position (usually the fetal position in a chair) and I'll have one of the "almost hiccups" that I describe below and a tiny tiny burp can pop out.

- I have terrible gas that comes out of only one way. When I have an onset of any symptoms I get "almost hiccups" which are like hiccups but aren't..

- Coffee and tea (even decaff) give me symptoms and soon after I've consumed, I need to go to the toilet for a #2.

- I've never noticed lactose intollerance.

- Hot drinks seem to be bad..

- Beer bloats me up to the point where I am full up, therefore I prefer spirits.

- I suspect mashed potato can have an affect on me too, though it is so difficult keeping track of what is effecting me when I eat meals.

- I am very young looking, I am 22 this year and look substantially younger and elements of me are still developing (chest hair has yet to come)

- I do not gain weight at all.

- When I bloat, the lower area bloats up and I look pregnant.

- There's often dull pains in the large gut area.

- Symptoms usually bring on tiredness to the point where I feel like going to bed quite badly.

- I go into a bad mood when symptoms are bad.

- My stomach usually sounds like a boiling pot.

I just had a mocha earlier. I know that Mochas are bad like the other coffees, but I think it is especially bad. I have just experienced another painful episode which I am certain is the Mocha..

I have been to the doctor several times regarding this. I had a blood test and apparently it was 'normal'. I queried them about celiacs and he refused to refer me to more advanced checks, saying that the blood test would have identified if I needed to be referred for those checks. He simply said it was IBS and that was that.

I went to the doctors another time and saw a different doctor, this time the doctor tried to say it was all 'mental' and gave me Amitriptylyne (spelling?).. I took it for a few days but didn't finish the course.. This wasn't for me.

Please, if anyone can offer any suggestions or point me in the right direction, then I'd greatly appreciate that. This is a big problem in my life. It affects me personally and socially. I cannot lie down with my girlfriend as there's always noises coming from my stomach. There's usually discomfort. I'd just like to identify the problem and resolve it by any means neccessary.

[ravenwoodglass]

False negatives are not uncommon. You have a couple choices, you could try Enterolab for stool testing for antibodies or you could do a strict trial of the diet or you could look for another doctor who is more knowledgeable about celiac. You do sound like you could be one of us.

[jerseyangel]

Yeah, I agree. My advice would be to try going completely gluten-free for 6 weeks, keeping a simple food/symptom diary. Gas is your body's way of telling you that you're eating something that you are intolerant to.

Your symptoms sound very familiar--and I never burp either. When I was still having symptoms, the gas would shoot upwards and cause such pain that I underwent cardiac testing. Frequent hiccups can also be a symptom of a hiatial hernia.

I'm sorry that your doctor wouldn't work with you on this to try and figure it out. If it's a food issue, you can get to the bottom of it by cutting out things like gluten, dairy, soy and corn at first--starting with a simple diet of meat, cooked veggies and fruit and rice. As you begin to feel better, add things one at a time with a few days in between and jot down how you feel--this is an elimination diet of sorts and is the only real way to figure out what is adversely affecting you.

[jeramy]

Yup, you've got to self-advocate. Definitely drop all gluten instantly. This isn't easy, if you don't have knowledge of where gluten can hide. It's not as obvious as just wheat, barley and rye. Check out the unsafe and safe ingredient lists on this site. AND to get started and take the guess work out of it... go to the store and buy yourself a bunch of gluten-free packaged products or order the stuff online.

I'd also recommend the book "The Gluten-Free Diet". I have been on a gluten-free diet for 12 years, but I got this book anyway to see if there was any new or useful info. It is very well written for someone new to the celiac world or anyone who thinks they might have celiac. It has great lists of safe and insafe foods and helpful tips on living Gluten-Free. Definitly worth reading.

[GFinDC]

Your symptoms sound very familiar! I do have a suggestion for the burping problem. Try some peppermint tea and some Altoids peppermint mints. I haven't checked the other Altoids versions so don't try them without checking. The peppermint helps to relax the muscles and get the gas out.

You need to decide if you want a diagnosis or not. Most of the tests are worthless once you have gone gluten free. The exception is Enterolab which they say can detect antibodies up to year later.

If you go gluten free and want to get tested later, you will have to start eating gluten again for while before the tests. That can be very unpleasant and dangerous too if you do have celiac.