Advice?

[Kalanianaole]

While I realize that the internet is not the best place to go seeking medical advice, I hope somebody here can help me with this. I'm 24 years old, and for most of my life I've been very healthy. I'm very active, I swim about a mile a day on average, surf, and bike ride at least a few times a week. However, for the past few months I've often been felt MISERABLE, physically speaking. I started doing some research and discovered that I have many of the signs of Celiac: bloating, loose stool, recurring diarrhea, bad/sulfurous gas, chronic fatigue, and muscle aches. A few months ago, I went to see a doctor. Since I just moved to Hawaii recently, I didn't yet have a GP, so I went to a new one on the recommendation of a friend. The whole experience sucked - he was only a few years older than me, seemed to have no idea what I was talking about when I mentioned my suspicions of Celiac, and generally seemed to be a poor man's Doogie Howser. I gave him the benefit of the doubt at first, though, and he said he would run some blood tests and have the results for me in a few days. Two weeks later, after I'd called his office what seemed like a half a dozen times, he left me a terse voicemail saying he hadn't found anything but could refer me to a gastroenterologist. Unfortunately, with my work schedule, it's been nearly impossible for me to get an appointment with the one he referred me to. The one date we had set, the doctor had to break because of an "emergency" (probably a golf trip) and since then, in all honesty, I've kind of given up. I used to have a lot of confidence in doctors as a kid but all my recent experiences have been negative ones, so I figured I should just suck it up and try and figure it out myself. Plus after getting the huge bill for the absolutely useless examination and tests, I don't feel particularly compelled to empty my pockets for what could be another fruitless appointment with some tool who's glancing at his watch half the time.

But still, I'm not really sure what to do at this point. A few days ago I started a gluten-free diet, which wasn't terribly hard except I love pasta and all things Italian. I figure it's worth it since I should know soon whether gluten is the cause or not... but on the other hand, the online literature says DON'T start a diet without a diagnosis, since it'll make getting a definitive answer impossible. What would you do?

(Also, side question: can anybody recommend a decent gastroenterologist in Honolulu?)

[angel9165]

While I realize that the internet is not the best place to go seeking medical advice, I hope somebody here can help me with this. I'm 24 years old, and for most of my life I've been very healthy. I'm very active, I swim about a mile a day on average, surf, and bike ride at least a few times a week. However, for the past few months I've often been felt MISERABLE, physically speaking. I started doing some research and discovered that I have many of the signs of Celiac: bloating, loose stool, recurring diarrhea, bad/sulfurous gas, chronic fatigue, and muscle aches. A few months ago, I went to see a doctor. Since I just moved to Hawaii recently, I didn't yet have a GP, so I went to a new one on the recommendation of a friend. The whole experience sucked - he was only a few years older than me, seemed to have no idea what I was talking about when I mentioned my suspicions of Celiac, and generally seemed to be a poor man's Doogie Howser. I gave him the benefit of the doubt at first, though, and he said he would run some blood tests and have the results for me in a few days. Two weeks later, after I'd called his office what seemed like a half a dozen times, he left me a terse voicemail saying he hadn't found anything but could refer me to a gastroenterologist. Unfortunately, with my work schedule, it's been nearly impossible for me to get an appointment with the one he referred me to. The one date we had set, the doctor had to break because of an "emergency" (probably a golf trip) and since then, in all honesty, I've kind of given up. I used to have a lot of confidence in doctors as a kid but all my recent experiences have been negative ones, so I figured I should just suck it up and try and figure it out myself. Plus after getting the huge bill for the absolutely useless examination and tests, I don't feel particularly compelled to empty my pockets for what could be another fruitless appointment with some tool who's glancing at his watch half the time.

But still, I'm not really sure what to do at this point. A few days ago I started a gluten-free diet, which wasn't terribly hard except I love pasta and all things Italian. I figure it's worth it since I should know soon whether gluten is the cause or not... but on the other hand, the online literature says DON'T start a diet without a diagnosis, since it'll make getting a definitive answer impossible. What would you do?

(Also, side question: can anybody recommend a decent gastroenterologist in Honolulu?)

I am less than a year into my diagnoses but I suffered for over 20 before I was properly diagnosed. I saw many doctors over those years and was always sent away with "IBS" and your tiredness is "normal". UGH! My little sister has had the same stomach issues but her initial testing was negative. I encouraged her to try the diet as she didn't really have the money for further testings. She has been gluten-free for almost 2 months and feels great. Last weekend while traveling, she ate a sandwich and as of last night, she is still suffering from the set back. I would suggest the same for you...try it for 6 - 8 weeks and see if you feel a lot better. If, at that point, you still aren't convinced, eat something with gluten and see how your body reacts. From what I understand, there are many people who test negative but are doing so much better with a gluten free diet. I too am an italian food lover but I have found gluten-free pasta that tastes just as good so I don't feel like I'm missing out on everything. Mostly, it's the convenience I miss but I'm adjusting. Good luck!!

[Kalanianaole]

Thanks for the words of support.

After reading some other posts on this site, I should probably change the word "miserable" to "very uncomfortable" because my symptoms haven't been nearly as severe as many others here have. I guess it's all relative, since I'm used to feeling pretty healthy, but it sounds like a lot of folks here have had absolutely harrowing, excruciating experiences. So maybe I don't have Celiac. I thought I might because most of the symptoms fit (although I've never had any kind of rash) and I can't think of what else it could be. Honestly, it would be nice just to know what's wrong with me. I hope it's not cancer or something, maybe I should try and see a gastro again. I don't know.

[Takala]

Go back to Dowgie Bowser's office and make them give you copies of the test results.

They are yours, by law. ALWAYS keep written/printed out copies of your tests.

I am living proof some docs will actually withhold test results, and make (deliberate) misdiagnosis.

A certain % of us never test positive high enough on the blood tests available at the time, and have to sustain enough of other damage from the disease to be able to draw a conclusion of what to do. You don't want to do that. I was to the point I had severe ataxia, and brain lesions finally showed up on a scan, plus ongoing C - spine damage from bone loss/arthritis. Still had Nasty Doc have the nerve to call me a head case who was making it up. It's all about the $$$ with these insurance companies, and most doctors have to play the game, but some seem to relish it.

Suggest that if you have insurance, to pursue a medical diagnosis, however, if you can't get services, and really need to know, go to an otc route and get another antibody test and a genetic test to see if you are a carrier of the most common genes for it, (plus, look at your ethnic background, go to wikipedia and look at the HLA DQ2 and DQ8 gene files, which will give more info on this.). This does not mean for sure that you have it, if you have the genes, but can increase the probability that you could be at risk for it. 30% of the population is at risk, but supposedly only 1% develops it, but now researchers are saying there is likely a much higher percentage of gluten intolerant people, as well, maybe between 5 - 7% of the population at least. (controversial, google search Dr Fasano, Dr Peter Green)

Gastro doc likely to blow you off, with a negative blood test.

See recent post on this site about Canadian doctor who trains others saying that large percentage of biopsies are not performed thoroughly enough. Swell !

Also if you are an outdoors person, you may want to get a Lyme disease test, as that can also make you gluten intolerant. You may have picked it up on the mainland.

When all else fails, try a gluten free diet and see what happens.