Would You Get Tested?

[gfprof]

I've never put much faith in doctors, but after increasing GI distress over about a year and a half, I went to my doctor and complained that I thought I had a 'wheat allergy' (I didn't understand the difference at that point). She didn't do any testing, and instead gave me the 'eat more fiber' diagnosis along with the weird 'you get backed up and then it all comes out' explanation. (Hello: I'm having the opposite problem! Where do they get this stuff?) So I went wheat-free, then I was sick only when I ate out, then went gluten free for the last month, and I'm only sick when there's an accident (hidden ingredients, cross-contamination, etc.) This seems like a no-brainer to me, but friends and fam are pushing me to get tested. From lurking on this board, I understand that I have to eat wheat, get really sick, and be toilet- and bed-ridden for many days in order to do this.

Should I do it? Is it even worth it at this point? Has anyone ever had a 'verbal' diagnosis from a very understanding doctor? Am I ignoring another horrible possible disase?

Or should I just LIE to all of those well-meaning folks and say I've been diagnosed so that they'll leave me alone?

[Chicklet]

I wouldn't and didn't. I too went on the gluten-free diet before any testing was done. I will not go back to eating gluten ever, I react strongly to accidents and that is enough proof for me. Not to mention when first going on gluten-free I felt better in 3 days.

Now you could find a doctor who knows about Celiac and Gluten Intolerance and he/she might just diagnose you from the diet reactions.

[par18]

Unfortunately I still believe the majority of the doctors out there don't understand the cause/effect of gluten intolerance enough to make a diagnosis based on diet response. That said I for one would like to have known that a diet change was a possibility for my years of symptoms. Even if I might not have gone or stayed on the diet at least I would have known the doctor was thinking it (Celiac) was a possibility. The only way I think real progress will be made as far as early diagnosis and treatment is if more people like yourself prove through diet response that your problem is related to something yhou are eating. I for one applaud anyone who has the knowledge and willpower to give the diet a chance and if successful be satisfied with the results and get on with their life. Whether you spend a lot of money on testing or "figure" it out for yourself the treatment is still the same. Good luck.

Tom

[ravenwoodglass]

Here is one possible way you may get your regular doctor to 'diagnose', if you have been ill and have been making frequent visits to your doctor and then he doesn't see you for a year or so and you walk in a different energetic person who has no complaints and then you tell him the only change was the gluten-free diet he may very well at least put gluten intolerant in your record. Doctors are becoming more aware of the drawbacks to the conventional testing, they can firmly rule celiac in but not out. The dietary response is the most important factor and you have that.

You might also consider being tested by Enterolab, they do fecal antibody testing and can also do genetic testing for the celiac genes. You doctor might diagnose based on the results of those tests and dietary response.

[gfprof]

Thanks everyone!

I feel so wonderful right now that I can't even imagine having to go through that. I think I'll take your advice about telling my doctor and maybe save a few people after me from the 'metamucil' prescription. ugh.

I will check out Enterolab too, so I can blame the parents later!

[Ursa Major]

Good for you for staying on the diet. You know gluten makes you ill, and it is nobody's business what you eat or don't eat.

I was never officially diagnosed, but know that gluten is terrible for me. I am a very blunt person, beating around the bush is foreign to me. So, I tell people straight out that I can't eat anything containing gluten, and will not eat anything questionable.

I have no qualms when it comes to asking relatives to let me look at the ingredients of whatever spices, sauces etc. they have put into their cooking. If it is not safe, I won't eat whatever the questionable food is. I couldn't care less who might be offended. I refuse to be made sick by anybody's cooking.

Why do your friends and family want you to get tested? Who's body is it? Tell them that you are finally well, after being quite sick for a long time. You have no intentions of getting sick again only to confirm what you already know, namely that gluten makes you ill.

Your doctor had her chance of figuring it out and blew it. Why do people think that you have to be diagnosed by one of those doctors to justify being on the gluten-free diet? I think common sense is better than most doctors, especially when it comes to intolerances and diet. Doctors know precious little about nutrition and intolerances because very little time is spent on those subjects in medical schools.

The pharmaceutical companies control the medical schools, and they don't want people to be diagnosed with illnesses that don't require medication.

[lucy lou]

  par18 said:

Unfortunately I still believe the majority of the doctors out there don't understand the cause/effect of gluten intolerance enough to make a diagnosis based on diet response. That said I for one would like to have known that a diet change was a possibility for my years of symptoms. Even if I might not have gone or stayed on the diet at least I would have known the doctor was thinking it (Celiac) was a possibility. The only way I think real progress will be made as far as early diagnosis and treatment is if more people like yourself prove through diet response that your problem is related to something yhou are eating. I for one applaud anyone who has the knowledge and willpower to give the diet a chance and if successful be satisfied with the results and get on with their life. Whether you spend a lot of money on testing or "figure" it out for yourself the treatment is still the same. Good luck.

Tom

Very well said, Tom. I'm beginning to feel much the same way as you-that if you feel better eliminating gluten it makes sense to just pay attention to how your body responds. I am very weary of the unending search for a doctor that "gets it". Wish I could pin point what hidden food additives-especially at restaurants cause reactions. Any thoughts?

[ksymonds84]

Hello and welcome to the board! If you decide to stay gluten free without testing, read over the mayo clinic's website on celiac. They state that a diagnosis can be made through a positive dietary response. They also say not to do this if you want further testing because it will be negative. I feel that the Mayo Clinic in Rochester MN is one of the top notch facilities in the US and if they will diagnose on dietary response alone then thats all I need to know. I do have a understanding doctor that diagnosed me after being impressed that all my gastro symptoms went away on a gluten free diet (except when I accidentally mess up which happens alot in the beginning!) but those docs are extremely hard to find. Your family will hopefully come around when they see how much better you are but you have all of us here on the board for support whenever you need us!