Apprehensive About Going To Doctor With This

[Joyous]

I have an appointment with my PCP on Tuesday, and she's going to give me a referral to an allergy specialist and/or gastrointestinal specialist, but for some reason I'm really nervous and apprehensive about getting evaluated and tested.

Part of the reason is the amount of time it takes these things (between insurance approval of the referral and the amount of time it takes to get in once you're able to set up an appointment and then waiting for test results). I think though that the main reason I'm apprehensive is because I feel like a hypochondriac. I've been evaluated for so many things and have had so many random complaints. It's not just that though... I'm worried that this is going to be a frustrating process that won't offer any answers when it's all said and done (maybe that's just because that's what I'm used to?). I guess I'm just not in any rush to get another negative test result.

I'm also apprehensive about finding out that I do need to maintain a gluten free diet. It seems like so much work. But on the other hand, the idea of getting relief from all of the symptoms I've been dealing with, especially fatigue, compels me to act.

I'm considering just forgoing the testing and trying a gluten free diet for a short period of time and seeing what happens. If I did that, how long would I need to be on a gluten free diet in order to see a real difference, enough to know that it's working?

[Ursa Major]

I understand where you are coming from. If you don't want to go through with the 'official' route of testing (which can be very frustrating and drawn out and not give you any answers in the end), why don't you just go gluten-free and get tested with Open Original Shared Link? Their tests will still pick up gluten intolerance up to a year after going gluten-free. Meaning, you don't have to eat gluten to do it.

Some people will start getting relief of their symptoms within a day of going gluten-free (I was one of those), while it takes more than two weeks for others. So, if you try it, be patient if you don't see immediate results. Also, be prepared for possible severe withdrawal symptoms, which can last for about two weeks (not everybody gets them).

It would also be wise to eliminate dairy and soy, at least for the first few months of a gluten-free diet. If your villi are damaged, you won't be able to produce lactase (the enzyme needed to digest milk), because it is normally produced by the tips of the villi.

[Ginsou]

I agree with the previous poster about having tests done by Enterolab. After being very ill 24/7 for two months, and getting nowhere with antibiotics, diet change, "guesses" by pcp....diverticulitis, IBS, etc. Was referred to a gastroenterologist and had a 5 week wait for the appointment! Was in such severe pain I ended up in the emergency room where a CT was done. Results were normal. Had blood test for H. Pylori and Celiac with gastroenterologist and they were negative. I have no insurance and simply could not afford any more medical care or tests. I put myself on a gluten free diet,spent hours on line learning about gluten. I think it took about 2 weeks before I started to get well. Out of curiosity, I thought it was worth the money to have Enterolab do some testing. Results were positive for celiac/gluten sensitivity. DNA was positive. Altho I felt much better, something was still bothering me. I had an additional test done for dairy and it was also positive. I was eating a lot of soy yogurt and soy milk....still had some problems. Had the test done for soy, and it was positive. I never knew so many everyday products had soy in them. I also had the egg test done, and it was normal, so I think perhaps I'm at the end of the rainbow. It has been very, very hard to stay on a strict diet, but I am well again. When I think back, I've had this condition for years, and never knew it. My 94 year old mother has had digestive problem for years, and my aunt had undiagnosed digestive problems since she was a young adult. DNA test showed one of my parents passed this on to me, and most likely at least one of my children will have the disease. Oldest son has had digestive problems for years, youngest son has been to the Emergency Room several times in the past 6 months because of severe abdominal pain. I would have never known this if I had not had Enterolab tests done!!!

The positive results may also explain why I had chronic fatigue and was sleeping 10 hours and sometimes 12 hours a night for years ....all tests were normal.

You're lucky that you have insurance....I'd have the doctor tests done, and also have the Enterolab tests done if you can afford it. You may find the answers you are looking for.

[Guest j_mommy]

Dr visit after Dr visit can get a bit tedious!!!

Think about what you want...if you don't want to deal with Dr's try the diet. For some it take days, other weeks and others months to feel better. Most can tell a difference within a couple of weeks though.

That said if you do choose to ever get tested by a Dr and you've already started the diet, you would need to do a gluten chalenge.(which is 4 slices of reg bread for a month, at the minumum)

It's a personal choice!

[Joyous]

Thank you everyone. It's nice to know about that lab... I'd rather just go through my doctor than pay for those tests, but my son's dad would probably not be keen on testing him for it, and he wouldn't agree to a gluten free diet when my son is at his house unless there was a positive test. Testing at that lab would be a great solution.