Negative Blood Tests

[jessicajane]

I was so sure that celiac was the right diagnosis that I started a close-to-gluten-free diet while waiting for the blood test results...which were negative. Still, the improvement in my many symptoms was dramatic. In less than 1 week.

1. Is there any compelling reason to have an absolute medical diagnosis?

2. Is it critical to be 100% gluten-free compliant to prevent the small intestine damage that leads to cancer?

3. Is it best to see a nutritionist, GI doctor, allergist...?

4. Is it really bad to have celiac disease on your medical record for future coverage? Would it be better to be undiagnosed for insurance reasons?

5. Are there any particular vitamins, minerals, herbs that help?

6. Would there be any harm in taking IBS remedies (lactobacillus)? Digestive Advantage IBS was very helpful for the digestive tract symptoms even before starting the gluten-free diet.

Any response to any part would be greatly appreciated! I've learned quite a lot from reading posts already.

JJ

negative blood test 2/25/05

close-to-gluten-free since 2/26/05

[celiac3270]

To answer your questions:

1. You are better off getting an official diagnosis if that is at all possible. So if you're on gluten right now or only gluten-free a few days, you might consider getting some bloodwork done before your intestines heal. You need an official diagnosis if you are going to do the tax deduction, though if you'd do that, food/medical must take up over 7.5% of your income...this won't apply to most. The military can't and won't accomodate to the gluten-free diet, so you cannot serve, but only if you have a diagnosis to prove that you must eat gluten-free. This is also important with schools--but if none of these things are important, then you don't need an official diagnosis at all--provided that you feel strongly enough about having celiac that you're willing to follow this diet for the rest of your life.

2. Yes--everyone makes mistakes once in a while, but if you are only half-gluten-free or you cheat on the diet, you are far more likely to get osteoporosis, cancer, etc.

3. GI doctor for medical reasons, nutritionist if you have difficulty with the gluten-free diet--they tend not to be too helpful.

4. Probably--there are stories here about insurance going up due to celiac

5. Depends on what deficiencies you might have. Folic acid is good to aid in digestion and a lot of people here take that. A daily vitamin is good, too--centrum is gluten-free.

6. I don't know about IBS

-celiac3270

[KaitiUSA]

1.A medical diagnosis can be good and bad. Insurance makes it bad but tax deduction makes it good.

2. It is so important to follow the diet 100%. Everyone has mistakes sometimes but if you are not following the diet you will most likely get other compications later.

3. GI doctor I agree is the best.

4. I have heard of a lot of insurance problems that can come with really any medical diagnosis. They consider it a complication so it might be hard to find insurance to cover or the price will be higher.

5. Vitamins are good for anyone. I take liquid ones I have heard they are better absorbed. B vitamins are good, probiotics and enzymes are essential.

6. Is what you are taking for IBS natural or prescribed. I would worry about if it is gluten free or not. Lactobacillus if my mind is correct is a probiotic right? Those would be very good to have still.

Good luck with everything

[jessicajane]

Thanks so much to both of you for the encouragement and good information.

One more question: is it accurate to say that if you are gluten sensitive or intolerant, you have celiac disease? or are there gluten-related conditions other than celiac disease?

I am hoping to be able to figure out what exactly is wrong with me so that I can do the right thing to treat it...I guess I will have to find a specialist. My doctor has admitted that he doesn't see much celiac disease...I'm lucky he even thought of it as a possibility, but with a negative test, he's satisfied I don't have it. I know that the change in diet made an immediate difference, so I'm not ready to go back to my former diet, and I'm not ready to give up on a definitive diagnosis!

I'm in the NYC area -- I see you are too, celiac3270. Any recommendations for good celiac disease medical professionals?

[celiac3270]

I think you can have gluten intolerance, which isn't full-blown celiac--but you still need to be on a gluten-free diet, regardless.

Of course, you can have allergies to wheat or rye, etc., but that's completely unrelated to celiac disease.

Dr. Green is the number one celiac specialist in the country and he's associated with Columbia Presbyterian--the most prestigious doctor you can go to--I'm only 14, so I'm too young to see him and my GI only works with children/teens, though he's fabulous. That's the only doctor recommendation I can give you, though Columbia Presbyterian is the most celiac-knowledgable hospital you can go to.

[jessicajane]

celiac3270 -

I've heard of Dr. Green and am going to try to get an appointment. Also Dr. Suzi Lee at Columbia-Pres. I feel I need to rule out celiac disease or embrace it completely! But thanks for making the point that either condition requires the same response - looks like I'm going to be embracing the gluten-free diet no matter what.

You are clearly a remarkable young man; the service you provide with your expert advice is extremely important and much appreciated.