started gluten free diet before diagnosis

I am still waiting for my son to go to the pedi GI and waiting for my blood test results.  I was curious how I would feel eating gluten free so I tried it yesterday.  I feel great.  My brain cloud is gone and I actually had energy.  I don't want to eat gluten anymore.  Is it ok if I stay on the diet even though I haven't been diagnosed?  Could this cause false negative results on possible biopsies?  I don't want to wait to start my son on this because he feels horrible.  I know he would feel better once the diet is changed, but our gi appt. isn't for another week and a half.  His blood tests already came back negative, but would changing his diet before his biopsy really repair his intestines that quick?

[beentrying2quit]

unfortunately you will have to eat gluten so the tests results will be accurate.  It will take 4-6 months for your sons intestines to heal..can be up to 2 years for adults.

[agirlnamedsuess]

Actually, i heard that you do not have to eat gluten for those blood tests to be accurate. Although, I do want to say that the rate of accuracy in the blood tests is only 60-80%. My son is gluten intolerant and his tests have consistently come back negative. i refuse to put him back on gluten at all, despite what the tests say. He throws up and has diarrhea. He is sick for two weeks or more with just one bite.
Sure, it is okay to remain gluten-free even if you do not have celiac Disease. Why not?
I will say that we have tasted virtually everything and this is what tastes best:
>Namaste products (especially spice cake; we use thwe waffle/pancake batter for breading on cubed steaks, etc...rather than pancake mix)
>Kinnick-Kinnick (I think that is spelled correctly)-we use the 7" frozen pizza crusts-they taste like normal crusts and bake in 7-10 minutes only (with toppings)
>GF Brownies
>And of course any unmarinated meat, fruit and vegetable is just fine for people with  Celiac Disease.
Susan

[agirlnamedsuess]

P.S. i would not put my son through a biopsy. I figured we were going to remain on the diet anyway, so why put my poor child through all that. That is really invasive and why bother? IMHO
Susan

[doyle2864]

My daughter has been battlin stomach issues for 3 years.  She is now13 and gluten was one thing we ruled out.  Fist we had a regular blood test and it was negative for gluten.  After a year of other testing our doctor told us she wanted a genteic test for gluten.  I ased what that intailed and she said just blood work, why she didn't do that one fist I will never know  but my daughter test positive that she could have a gluten allergy but the only way of telling for sure was the diet.  After 3 months there was no improvement.  

Genetic testing only shows 2 results:  Negative means you can NEVER develop a gluten allery.  : POSITIVE means you may not have it at this time but you could possible develop it over your life time.  Try this first because if it is negative why do a biopsy.  We had many done on my daughter and it was always negative.

GOOD LUCK :)

[GoingToMakeIt]

Others here have also mentioned this. Enterolab dot com has tests for gluten sensitivity. They are very accurate. There is also a lot of information about gluten problems.

[Soonerman]

For the Antibody blood test you do need to be consuming gluten for a period of time near when the blood is taken, or your results for sure could be false negatives.

[GoingToMakeIt]

I agree about eating gluten for the blood test. That is why the enterolab test is so accurate. It's a stool test. The colon produces anti-bodies and T-Cells for months after eating gluten.

[italianmom]

I just wanted to mention that many people can have a gluten sensitivity without actually having celiac or testing positive for the disease. Some times just going on the diet is the best test. If you feel better on the diet...there is your answer.