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Where Do I Start?
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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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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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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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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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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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    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
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