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Packard

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Packard Newbie
Packard
Posted

I went to my gastro-enterologist with my symptoms of celiac. He spent 4 months and about every test imaginable to find a cause. He ordered tests of my liver and gall bladder; he ordered an MRI, tested for lactose intolerance. He ran out of tests and handed me off to an associate who suggested a low fiber diet.

I read an article in the local newspaper about celiac and I put myself on a gluten free diet and 2 days later I was symptom free.

My question is: is this a qualified doctor? I use him for my endoscopy's. If he missed the celiac (and I don't think he should have) should I trust him with the endoscopy's? Or should I be looking for another doctor?

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DonnaD Apprentice
DonnaD
Posted
I went to my gastro-enterologist with my symptoms of celiac. He spent 4 months and about every test imaginable to find a cause. He ordered tests of my liver and gall bladder; he ordered an MRI, tested for lactose intolerance. He ran out of tests and handed me off to an associate who suggested a low fiber diet.

I read an article in the local newspaper about celiac and I put myself on a gluten free diet and 2 days later I was symptom free.

My question is: is this a qualified doctor? I use him for my endoscopy's. If he missed the celiac (and I don't think he should have) should I trust him with the endoscopy's? Or should I be looking for another doctor?

Hi Packard

You are lucky you stumbled on the answer so quickly. :P

I read that the average time taken to get a dx of celiac disease is 11 years and 15 doctors! for me it was all of my 42 years, rheumatologists, renal specialists, surgeons, pain clinic, de-nervation,physio x 5, 100s of doctors and I only realised what the cause of my problems were after my daughter (more classic symptoms) was dx in November and I found this board looking for food ideas for her. I soon realised that so many people on here had exactly the same pattern of progression, sl overweight, C, IBS, Fibro. So I paid for Enterolab tests (I had been wheat free so bloods would have been false-negative which is commom). I searched all my main symptoms here and soon realised my whole family had symptoms we had never even connected together.

You could look for another Doctor but I'm afraid if you read the experiances of others here they are all pretty hopeless. Most still think that unless you have the typical presentation of chronic D and have lost 15lbs it isn't possible to be celiac let alone any that will admit that gluten sensitivity, without villi damage, even exists! You could try and educate him but do check that he knows what to look for on the scope and takes enough biopsy samples or ask for reccomendations in your area from Others on the board who will be able to help you more with this as things done differently here in the UK.

Good luck!

Donna

happygirl Collaborator
happygirl
Posted

I had a similar experience in terms of GI running all kinds of tests, and my mom was the one who suggested Celiac. He never had.

I personally would choose a different GI because presumably, this dr. is not well-educated about Celiac. Having a dr. who gives you mis-information is horribly frustrating. But, if he seems willing to learn and provides you of some help, then it may be a more difficult decision.

If you are on a gluten-free diet, an endoscopy and biopsy will probably not show damage. You need to be eating gluten to have an accurate biopsy (I learned this after my endoscopy, although my GI told me it was OK to go on the diet for 6 weeks before my procedure.)

CMCM Rising Star
CMCM
Posted

My GP vaguely "knew what celiac was", and one day I walked into a GI's office (where I had had a colonoscopy 6 months ago) and asked about testing for celiac disease, and they scrambled around to find some sort of answer and finally came up with some vague statement about blood tests, and said "no, we don't have any celiac patients". Right then and there I decided not to go down that road if I didn't have to. It was obvious I would be getting into a very circular cycle of all sorts of expensive tests, and since I have a high deductible, it was mostly going to come out of my own wallet to pay for it all. So I decided to go the Enterolab route, and while the $350 is expensive, I think it will be money well spent and will certainly cost a whole lot less than all the traditional doctor searching would have cost. Besides, I don't have a lot of confidence in a doctor who actually knows less than I do about celiac disease! If I had found a knowledgeable doctor, it might have been different. By the time most of us find our way to this board, we have pretty much been taking the bull by the horns and trying to logically figure things our ourselves. The people I pity are the ones who remain clueless for a lifetime (that was ME!!! for 25+ years!!) because doctors are looking at virtually every possibility other than celiac! :angry:

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