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First Visit To Gastro Doc

robbiesmom

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robbiesmom Rookie
robbiesmom
Posted

My son Robbie has an appointment tomorrow with the Gastro doc-What will they do this 1st visit-should I expect a blood test? He has very tiny veins and the last blood draw about killed us all! :(

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KaitiUSA Enthusiast
KaitiUSA
Posted

If he has not had a celiac blood test then most likely they will go for that.

If you do not want a blood test or anything invasive then an Enterolab would probably do well. They do a stool test for malabsorption, tTG, gluten sensitivity and so forth..you can also order a gene test through them but that is not a stool test it is a mouth swab. They not only test for celiac genes but for gluten intolerance genes as well.

That would be a good alternative if you do not want to do blood work or biopsy.

How old is your child? Was he diagnosed yet?

robbiesmom Rookie
robbiesmom
Posted
  • Author

He is almost 3 years old and did have previous blood work on the 22nd. He was diagnosed with a level of 128.5.

KaitiUSA Enthusiast
KaitiUSA
Posted

If he was just diagnosed I would see no reason for another blood test so soon unless he is testing for something else.

robbiesmom Rookie
robbiesmom
Posted
  • Author

Thanks!!

jenvan Collaborator
jenvan
Posted

If you are going to a new dr, or a different one than who did the celiac blood test, take a copy of the results with you. If its the same doc, then don't worry about it...

lisabp Newbie
lisabp
Posted

For our visit we confirmed that our sone was "classic celiac" and the doctor told us to keep feeding him some gluten until the biopsy which luckily was scheduled for less than a week away. We also got his weight and height. That was it.

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robbiesmom Rookie
robbiesmom
Posted
  • Author

We had the visit with the Gastro doc today and they want to do a biopsy next Thursday! Robbie had fallen asleep in the car for 1/2 hour on the way and I had to wake him up when we got there-he was a complete pain in the butt-that is the last time I take him to an appointment with out his Father there! Consequently, I did not get to have a good talk with the doctor about why we need the biopsy and what would happen if we didn't do it? I figure I would call Monday after I had time to think about all the questions I should be asking, so I just set up the procedure, thinking I could just cancel if needed.

Can anyone tell me what this test tells us outside of the blood work? Will it tell us if he is really celiac or just wheat sensitive? Also if the diet works should we be bothering with an invasive procedure? My son also has asthma and putting him under has me worried. What happens if we don't do the biopsy? I am more cofused than ever! :huh:

KaitiUSA Enthusiast
KaitiUSA
Posted

Has he been gluten free at all? Results will not be accurate if he has. Also, I was diagnosed by blood tests alone and you are seeing more doctors use blood tests for diagnosis. My doctor did not even think one was necessasry after they way my results came back. I'm not a fan of biopsies. A positive one can rule it in but a negative one can't rule it out..there could be no damage yet if its in beginning stages or there can be sporadic damage that they missed.

Well the blood tests indicated celiac so my guess is he has celiac. If he had a wheat sensitivity it would not show up on a celiac panel. The celiac panel is for celiac alone.

robbiesmom Rookie
robbiesmom
Posted
  • Author

Robbie has be almost gluten free for a week 1/2 now-we had a couple of oops in there-some cheese sauce and nachos-he still has irregular bms-some have been pretty good and then he'll have a real yucky one-so in my mind it is starting to work and I am leaning towards no biopsy-I will talk to the doctor again on Monday and ask him my list of questions before making my final decision. Thanks! Sara

Guest Lucy
Guest Lucy
Posted

Sometimes a biopsy is required by insurance company's for an "official" diagnosis. Also when your son goes to school you will have to have an "official" diagnosis for his meals and so forth. IF they Dr is willing to make that without the biopsy, then go for it.

My son had a biopsy when he was 2 1/2. He had NO symptoms of celiac. The only reason he was tested was b/c of his diabetes. It was a typical screening. He failed the bloodwork. So we scheduled a biopsy.

The biopsy, in all reality, was a breeze. It lasted about 45 minutes and a hour after the surgery we were on our way home. That is with him being diabetic and having to have blood sugars stabalized before we could go. He never really complained at all. He had a raspy voice for a day.

robbiesmom Rookie
robbiesmom
Posted
  • Author

Well, after careful consideration and many questions to Robbie's doctors we finally decided to have the biopsy. For insurance purposes and school issues we thought we should make it conclusive. We went today and Robbie was a real trooper-after the procedure he was very agitated and disoriented-also had some pain because they took more than just a biopsy of his small intestine-There was some damage to his esophogus, so they took samples from there, his stomach and intestines He may have acid reflux, not asthma like they first thought-it makes sense as he only coughs at night while lying down, and he has thrown up a couple of times from coughing too hard. His only other issue was some nausea from the anestithia(however its spelled!)-he got sick in the hospital and also in the car on the way home-he seems fine now! Now we have to wait a week! It will drive me nuts-I should have my blood test results by then also! I'll keep you all posted! Sara :rolleyes:

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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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