Do You Think I Have Celiac Disease?

[LeonardChallis]

Hi guys, let me thank you for taking the time for your opinions and advice, I really apprecaite it. Let me quickly tell you my story:

I am 25 now (26 in april). Just after I turned 25 earlier this year, I started getting stomach aches every so often. It gradually started getting more frequent and with increased intensity. After a few months they had gotten bad enough for me to reluctantly agree to going to the doctors. I went to the doctors and he gave me some tablets. A few weeks later, after taking the tablets and having worse stomach pains, I went back and complained again, and the doctor told me he wanted to do a blood test. He also gave me some different tablets. I had the blood test taken and started my new tablets.

Another week or two later my stomach got even worse. I went back in to the doctors and this time my doctor was away so I had another doctor. The new doctor actually told me what the other one was treating me for -- IBS. He gave me a third type of tablet to try, this time an alternative approach to treating IBS -- a sort of peppermint pill. Not long after that my blood test results came back and the doctor told me there were certain things that were a bit "out" and asked me to return for another test.

At this point I was taking the new tablets, and although I didn't feel they were doing any better I left it a bit longer to give it more of a chance. I went in for another blood test and while the nurse was out the room I managed to sneak a look on the computer screen and wrote down ALT SGPT - Liver function tests on my phone. I went home and a week later my doctor said they were "off" again and asked me in for another one. This time the doctor asked me about drinking, drugs, etc, as the levels were high - it was around 90, a little over I think, but I don't do drugs, I have a fairly decent diet and I very rarely drink. He said I had to come back in 3 months for another test to see if it had gone down.

Not long after that my belly continued to get worse so I went back and told the doctor again. This time he put me on anti-depressants. I was worried about this, I'd heard and read that they were quite addictive and it seemed they would only mask the pain. But the doctor assured me it wasn't anything to do with anxiety, etc, and it was to make my brain "think about how it reacts to the pain differently". So I started taking these new tablets, and admittedly they had an effect. They made me very, very tired, I was sleeping in excess of 15 hours a day and feeling very lothargic. I am a computer programmer so using my brain is very important, and at the end of the 2 weeks before I had to go back for a checkup the pain had started coming back too, so I told the doctor this and he gave me some other tablets, my 5th different type, some more anti-depressants that would have the same effect but hopefully make me less tired.

I started taking these for a short amount of time (less than a week) and I wasn't tired but my belly felt just as bad as before the first lot of anti-depressants. One thing I noticed the whole time was that when I got stomach pain, one of the only things I could get the pain to stop was to actually eat something. This seemed to temporarily stop the pain, or at least subdue it a bit. Sometimes it got so bad I felt sick and nauseous, and although I was obviously no expert I couldn't believe it was just IBS, surely IBS isn't that bad?

Coincidentally, a week ago I talked to my dad who just so happened to mention (thanks for waiting so long!) that when he was a kid he was diagnosed with celiacs disease, thought he doesn't seem to suffer that much from it these days. I didn't think it was what I had though as I had been told repeatedly by my doctor that he was "certain" it was IBS. I started looking at some of the symptoms on the internet, and although I would trust a doctor more than a web page, the symptoms seem to fit really well. I have frequent stomach cramps, I have raised ALT SGPT, none of the IBS treatments seem to make a difference. Also, though I'm unsure if this is related or not, I have a few areas on my skin which started at a similar time, probably a little later, as the stomach pains, that are quite itchy and like a small rash.

I decided to try out a gluten free diet. I'm very lucky as my girlfriend's old best friend before we moved was a celiac, so she knows a fair bit about diet and things like that. I admit I'm pretty poor at that kind of thing. I have now been going about 3 days, and although I get the occasional small pain (a lot less than before) I am far better, and I'm not taking any tablets at all at the minute.

OK, I may be bias and looking for a reason to my stomach pains and other problems, but in your honest opinion do you guys think it is likely I might be celiac, or am I jumping to conclusion. Be honest, I hate wasting peoples time. It's sad that I have to come and ask members of the public because I really don't trust my doctor. He has not once mentioned celiacs nor has he asked me to try going without gluten for, say, a month, to see if there's any difference. He was, however, happy enough for me to go and buy tablets every few weeks, which don't end up being cheap.

I am contemplating going to the local pharmacy and getting a biocard celiac home testing kit, even if just to get some inclination before going back to my doctor. I guess I'm a little worried about going back to the doctor and telling him I have diagnosed myself! :S

Sorry this has been a long post, and thanks again everyone who has taken the time to have a look and help me.

[mushroom]

Hi Leonard, and welcome to the board.

Yes, the standard doctor response is always to give tablets to mask the symptoms rather than to find out what is causing them. For most doctors, celiac disease does not pop into the brain as a diagnosis because there is no pill to treat it, but IBS does because the drug companies peddle drugs for that (which, by the way is (or should be) a diagnosis of exclusion -- i.e., if they can't figure out what else it could be it is thrown into the IBS wastebasket. While it is always desirable to seek the opinion of medical professionals, they are not infallible and sometimes the answers found on the internet do match the symptoms a lot better than the doctor's diagnosis - depends what school he went to, and when, and what continuing education he has attended (absorbed).

I do think it is likely that you are gluten intolerant. Remember that celiac disease is one form of gluten intolerance, the form that they have objective tests for. There are other forms of gluten intolerance where you do not show up positive on the celiac tests but may suffer exactly the same symptoms and the treatment is the same, a gluten free diet. I would at the very least ask your doctor to test you for celiac disease. If your blood test is positive he may want to do an endoscopy; whether you proceed to have this test is entirely up to you. If you are talking about a Biocard test I am guessing you are a Canadian and the wait for an endoscopy could be long. But regardless of which tests you have done and their results, I would recommend that you try the gluten free diet for three months and see how you feel at the end of that time. Keep us informed of your progress and ask any questions about things we can help you with.

[starrytrekchic]

You're going to have to be your own advocate here. Demand your doctor give you answers, and question every thing he does. Every test, what he's testing for, why he's giving you certain drugs, what he's ruled out and what he hasn't.

I also received the IBS diagnosis at a time when I wasn't used to questioning doctors either. It took me 11 years of suffering to find out it was celiac instead. IBS isn't a diagnosis. It's not a illness--it's a set of symptoms. It's like going to a doctor, telling them your head hurts, and them diagnosing you with a headache. You need to find out WHY you're getting IBS symptoms.

Among other things, your doctor should have run stool tests to test for bacteria, lactose intolerance tests, vitamin/mineral levels to test for malabsorption, food allergies tests, and other things. If none of that checked out, you should have been sent to a specialist to check for Crohn's and other illnesses that require biopsies (either a colonoscopy or an endoscopy.)

If you can, get an appointment with a gastroenterologist. If not, you actually need to stop the gluten-free diet and get tested for celiac. The blood tests won't be accurate if you're already gluten free.

If your doctor wants to give you any more drugs without ruling out reasons why you're getting sick, you need to find a different doctor. This one doesn't sound like he's worth much.

[LeonardChallis]

Thank you mushroom and starrytrekchic, some fantatic points raised. I am a little confused though on what I should do next.

I am not actually from Canada, I'm from England. We spell it Coeliac here, but when you're in Rome, and all that

I am now wondering whether I should stop my gluten free diet and go get tested, or should I continue on the gluten free and see how I feel after a few months and then go back to the docs and let them know how it went and suggest the tests?

Thanks again

[starrytrekchic]

If you try the seeing how it feels for a few months, you'll actually have to do what's called a gluten challenge for the tests to be accurate. You'll have to ingest gluten (the equivalent of several pieces of bread) every day for 6 weeks before you can have the bloodwork and endoscopy done. IMO, it's easier to have the testing done now. Then, I'd go on the diet regardless of the results and give it a few months to see how it goes.

[GFinDC]

Hi Loenard Charles,

Coeliac is a genetic condition, so the chances are pretty good that you have inherited the genes from you father. Doctors used to believe that children could outgrow celiac and they were often diagnosed and still put back on gluten later. Not a good idea, but that was the understanding back then. Celiac doesn't go a way, although symptoms may be masked for a while, they do come back and often with bad results. Your dad should definitely go on the gluten-free diet, or his health could take a hit at anytime.

Your body will slow down and stop (in theory) making anti-bodies to gluten after you quit eating it. That's why it is important to keep eating gluten if you want the blood tests to have a chance of being accurate. Even then, you can get a false negative on the antibody test or the endoscopy biopsy.

The tests can show celiac, but they can't rule it out if negative. Some people have severe symptoms but don't test positive.

In England they may reimburse you for some of the gluten-free food costs. But a diagnosis would probably help with getting that reimbursement.

[LeonardChallis]

Once again, fantastic replies, thank you all so much.

I will take this advice and let you know how I get on. Maybe I'll be hanging around these forums more than I initially anticipated, who knows?

Thanks everyone,

Leonard