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jcgirl

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jcgirl Apprentice
jcgirl
Posted

Advise needed. I put my 12 year old son on a gluten-free diet for 2 weeks and he felt much better. Bloating and diarehha all but disappeared. Then the hard part came, back on gluten. He is now spending alot of time in the bathroom again, bloated and getting headaches. Also vomitted a couple times. I am trying to get him into a GI specialist in Rochester, NY however I have to wait until the 9th to even make an appointment (doctor's vacation). My question is this, should I put him back on the gluten-free diet until seeing the GI doctor or wait? I know that the best option for him is gluten-free but my concern is what if there is something else wrong. I am 99% sure that he has a gluten intolorance. The celiac panel that his ped. ran came back in the normal ranges which is confussing due to the positive changes he had while gluten-free. I am considering enterolab but I feel the need for a diagnosis for him. As for myself, gluten-free sense January and feeling 100% better, well except for the slip ups.

So my question is, do I put him back on gluten-free diet until he sees the GI doctor. I hear it may take a couple months to even get in.

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KaitiUSA Enthusiast
KaitiUSA
Posted

Well if you want another test done he needs to stay on gluten until after all testing. I would find a doctor who can get him in quick.

Also I found how I can get appointments quicker is if my dad calls. My mom called and they could get me in a month later...my dad called and they got me in the next day.

Was he gluten free when he got blood tests?

He could maybe be gluten sensitive but not full blown celiac....he may have IgA deficiency which is causing otherwise positive tests to come back normal...the lab may not have been accurate(there are only a handful in the US that are experienced in reading celiac panels)....he may not have been tested for the full celiac panel. There are numerous reasons why they could have come back the way they did.

Have him tested for the celiac gene as well.

He needs to be on gluten for testing...possibly having him get an Enterolab done would work. I think that is a good test.

Good luck and hang in there :D

  • 2 weeks later...
jcgirl Apprentice
jcgirl
Posted
  • Author

Update, I was able to get my son an appointment at the Golisano Childrens Hospital's Pediatric G.I. center in Rochester, NY. I was referred to them by the parent of one of son's friends whose sister has celiac. Has anyone heard of Golisano and or Dr. Rossi? There is only one ped. GI in my area (Binghamton, NY) and I was told that he isn't so knowledgable about celiac disease. so we are going to tuff it out until August. I don't want to put my son through all the test and the you have this, no you have that, oh lets go back to the first diagnosis that I have gone through for the last 10 years. Very frustrating!

key Contributor
key
Posted

My baby was too sick on gluten to wait for his tests too. We are out of town right now. Anyway, I couldn't handle him being so sick on gluten. If I were you I would make a big deal about how sick your son is to the office and see if they can fit him in. Also, it seems like there should be at least 2 pediatric GI's in the group that your doctor is in. SOmeone should be there, even if one is one vacation. Another suggestion is to ask them to call you anytime if someone else cancels an appointment.

I just posted this in another post, but my husband is at the National Institute of Health and he is a physician. Anyway, in a lecture they just said that the blood tests were the best test for Celiac and not the biopsy. But I would be certain that all the right tests were run and that a good lab is reading them. My son's blood work must have been inconclusive too, because they didn't say he had it after his blood tests, but I do know his IgG levels were elevated, but I guess that is non-specific.

I guess you have to do what you feel is personally best for you and your son. I know having someone tell you that he has it 100% is nice.

GOod Luck

Monica

jcgirl Apprentice
jcgirl
Posted
  • Author

I didn't think about asking to be fit in if there is a cancellation. I will call tomorrow. He has also had several staph infections and has been on all types of antibiotics. His regular pediatrician doesn't seem to think much of it, did do a culture the other day though. These things are huge and very painful. Don't know if it is related to gluten or not. He also gets very bad chapped lips and also also chapped on the skin around the mouth and cracks in the corners. Any relation to celiac??????????????????? <_<

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