Celiac (Sprue) Disease Community
started gluten free diet before diagnosis
About This Community:

This patient support community is for discussions relating to Celiac (Sprue) disease, anemia, behavioral changes and neurological issues, dental issues, diet and nutrition, infertility, gastrointestinal issues, gluten-free recipes, growth issues, infants and children with Celiac, pain management, and skin and dermatology issues.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

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?
Related Discussions
8 Comments Post a Comment
Blank
268911_tn?1213748381
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.
Blank
Avatar_n_tn
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
Blank
Avatar_n_tn
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
Blank
Avatar_n_tn
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 :)
Blank
352798_tn?1399301754
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.
Blank
Avatar_m_tn
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.
Blank
352798_tn?1399301754
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.
Blank
Avatar_f_tn
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.
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Celiac (Sprue) Disease Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
Top Digestive Answerers
1340994_tn?1374197577
Blank
Caryopteris
Raleigh, NC
Avatar_f_tn
Blank
CalGal
CA