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What Will A Gi Doctor Do?
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4 posts in this topic

My son just had his one year well baby and has fallen off the growth charts and now has a trend for a downward spike for the last three appts. We went and had blood work done and his Gliadin AB IgG level is 17. No our ped wants us to go to a GI specialist. Does anyone know what the next step is and what the GI specialist will test for and how invasive the tests are? Anything would be helpful we are kind of at a confused stand still and I haven't been able to get a straight answer. Thank you so much.

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Hard to say as I've always understood that celiac tests at this age are not nearly as accurate. Normally, the next step would be a small bowel biopsy by endoscopy. Not sure with a child who is just 1 though.

richard

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willie25, I am new to the board but have done much research over the last month. My understanding is the biopsy is quite invasive and you might not get a clear answer anyway. I personally would listen to what the GI wants and do your research before you say yes. I got my answer from www.enterolab.com. I think I have become their biggest fan. My child has suffered four years now and blood tests were all negative for celiac disease and allergies. The FACT that my child COULD go to the bathroom without days of pain and laxatives when gluten products were removed from her diet, didn't matter to anyone. (nor did the just under 3000.00 in dental bills because her teeth melted away to cavities) Enterolab has a lot of information on tests and biopsys and just keep clicking on the website and go to IntestinalHealth (from enterolab) and read all you can there as well. The team has focused their lives to intestinal health and they are up on the latest. My GI had his head somewhere and would only except the celiac disease diagnosis with a blood test. The stool (which is so easy to do) and gene test were delivered to my door and picked up from my door and there was no hospitals or needles required. My four year old laughed at having to go pooh in a container on the potty. It is pretty scarry with a little one, just get yourself educated and stand up to the doctors if you believe from your research that their information is outdated.

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Well I haven't posted in a long time because my son is sick alot. But I feel every sitution is different and you will just have to see what happens. My son was diagnosed at 17 months. They started out with finding fat in his bowel movement, it was positive for celiac. Than they did the blood test and it was positive for having celiac. Now the small intestine came out negitive for celiac. My son fell off the charts also, he would not eat. Only maybe a couple of bits or a couple of sips. I breast fed him for 17 months. And than the doc put a feeding tube in his nose. Now he has a feeding tube in his stomach. The feeding tube saved his life, food hurt him so he wouldn't eat enough to keep him alive.

We are in the hospital every three months for tests, celiac also comes in two's.

You can check out my son on www.caringbridge.org/co/zack.com

God Bless and Take care

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    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
    • Annual celiac antibody testing is, in my opinion (and based on what celiac researchers have published), is critical, especially for a 12 year old.  Life is going to get harder for her.  Peer pressure is huge (I have a 15 year old daughter), and remaining diet compliant can be tough.   In Dr. Fasano's, Gluten Freedom, he discusses a young patient who became ill in high school after being gluten free for years.  His parents were perplexed.  Dr. Fasano took the young man aside and he confessed that while on a date, he didn't want to bring up his celiac disease.  So, he ate pizza.  He was too embarrassed to tell his parents.   My daughter does not have celiac disease.  She was first tested two years ago.  Since she is symptom free, is not anemic and her other lab work is fine, we'll wait to test her in another year.  It all depends on the patient, but every few years, testing is recommended for all undiagnosed first-degree relatives.   It certainly sounds like your younger children should be screened.   I wish you both well!      
    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
    • I'm sure going to have a long talk with my doctor.  Then I'll find a new one that will support me and make sure that my daughter and I both have the proper testing done yearly.  
    • also:  glutendude - i don't get it.  shouldn't it be glutenfreedude?  lolz i eat out few and far between.  most of the times i've been glutened it's been eating out.  this weekend i'm getting my bacon cheeseburger on at red robin  i always get my 'good' waitress - lucky, i guess, paula takes good care of me   and i will eat at bonefish but they have a limited 'safe' menu.  look for places that have the 'GiG'  training they know their stuff.  mellow mushroom, melting pot, california pizza kitchen, pf changs are all supposed to be trained that way.  they know to avoid cc and change their gloves, etc.  
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