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Where Do I Start?


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4 replies to this topic

#1 chasesmom

 
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Posted 22 June 2004 - 10:14 AM

When my son was 4mo. old I sought help on-line for his fussiness/gas/liquid stools. My pediatrician tested for lactose intollerance and said he was positive. Going dairy-free did not improve things. After much research we tried gluten-free and dairy-free diet. His condition improved greatly. He is now 17months old and my MD is advising we go through the testing to prove celiac disease. Where do I start? What will I have to subject my son to? Will he have to have gluten before the testing? (My MD says yes but I am so fearful of the results). Any advise??
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#2 lovegrov

 
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Posted 22 June 2004 - 11:07 AM

If all of your son's problems have resolved I personally think you have your answer. However, when he gets to school you might need certified proof to get cooperation from the school officials.

The bad news is your son would need to eat gluten every day for 8 to 12 weeks to make sure you get an accurate test. Even then the bloodwork could come out negative and then your doctor might start trying to tell you he doesn't have it. Tough choice.

richard
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#3 gf4life

 
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Posted 22 June 2004 - 02:58 PM

Have you considered genetic testing? I would recommend testing through Enterolab, since it is cheaper for the gene test, and they also test for other genes related to gluten intolerance, and not just Celiac Disease. We have two of each in our family(so far, my husband hasn't been tested yet), two Celiacs and two who are gluten intolerant without Celiac. Check with your doctor if this would be acceptable for a diagnosis, since you don't want to put your son back on gluten. It can sometimes take years to get enough damage to prove Celiac through blood tests/ biopsy, and I doubt you would want your child to have to suffer through his childhood.

Check out Enterolab. http://www.enterolab.com

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#4 chasesmom

 
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Posted 25 June 2004 - 09:17 AM

Thanks for the info. I will check out the genetic testing. We are changing insurance so cannot make any new appt. untlil after July 1. My ped. thinks I am nuts anyway. My son remains well above 50th % for growth, so in his eyes, does not fit profile for celiac. Friends and family also think I am nuts which is why I was hoping some kind of positive test results would validate my mother's intuition. Thanks for your time!
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#5 gf4life

 
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Posted 25 June 2004 - 07:16 PM

At Enterolab you do not need a doctors order for the tests. You can order them yourself. Also, most insurance won't pay up front for it, you have to pay out of pocket, but some insurance will reimburse you after the fact. You might want to check with your new insurance when it goes through.

My kids were never really "underweight", although I could see how little they were growing and how much smaller they were compared to their friends and classmates. We probably would never have known they had a problem, except I pushed for testing for myself, and for them. I have the problem of being overweight and my GI doctors all thought I was crazy to think I was Celiac. I do admit I was probably at the early stages of damage, but the symptoms were unbearable! Most doctors are still looking for the end result of years of damage to the intestine, when we know now that it can be diagnosed at an earlier stage and you will be able to heal much quicker. I was not willing to wait until I was half dead, knowing that gluten was my problem, just to get an "official" diagnosis from a doctor. It is my choice to feed my family a gluten free diet, and the Enterolab tests helped me to know I was doing the right thing.

My kids are growing rapidly now (my middle child gained 5 lbs and 3/4 of an inch in less than 2 months on the diet! He just turned 8) and I'm sure their GI doctor will be surprised when they go in for a checkup. They do not have an official diagnosis as their blood tests come back inconclusive, yet their Enterolab results show positive antibody levels to gluten, and the genes to back up either Celiac (for two of us) or gluten intolerance (for the other two).

I hope you are able to get your answers quickly.

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children




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