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A Few Questions?

KaidensMummy

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KaidensMummy Rookie
KaidensMummy
Posted

Hi there,

I just have a few questions & I am hoping to get some advice.

We are suspecting that my son has Celiac Disease but are not sure. The doc. told us to start him on a gluten free diet & see if this improves his symptoms.

The doc said to not bother with the blood test as this comes back negative lots of times & isn't covered by OHIP.....should I be insisting to have this done?

He did not mention any biopsy that I have heard mention of on this forum.

My questions to this is, if I go ahead & start cutting his gluten out will he not test positive on a biopsy?? I have heard a lot say that the biopsy is not always accurate but without it he will not be properly diagnosed & also is this a risky thing to do to a 2 year old??

Should I call the doc & insist on him having one done?

I know that this is obviously my decision but I feel like I have not been given the right info at all from the doc.

I am also wondering from some things I have read if my son may have the symptoms & would like to know if someone could tell me what they think.

My son has had diarrhea from birth pretty much. We ended up putting him on Soy formula as he was always cramping, bloating, crying & gassy when he was a baby. This helped him & the doc determined he was lactose intolerant. When he started eating (we give him Soy milk) the gas came back, along with chronic diarrhea. He will have diarrhea sometimes 3-4 times a day. It is always diarrhea & never solid. He gets rashes on his bum quite frequently as the diarrhea seems to be so strong & smells AWFUL.

I have heard people say that their children have troubles gaining weight but my son has always been a big boy. He was always at the top of the growth chart & weighed very good when he was a baby although, lately he oddly seems to be slimming down & not really gaining a lot of weight at his doc visits.

Also my son seems to catch every little bug that comes around. Last winter he was sick so much (strep, croup, bronchitis etc.) that the doc checked him for anemia & that came back negative. I read on someone's posting that a symptom may be canker sores??? My son gets canker sores.

If someone could help out with some answers/suggestions I would be so greatful.

Thanks so much :)

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Genna'smom Apprentice
Genna'smom
Posted

Hi

Let me just share a little bit. My daughter never had any symptoms at all except she was fussy and would cry and not be consolled at night sometimes when she was little but they attributed that to acid reflux and put her on meds and that seemed to do the trick. She was always on the small side (5% in weight) but they never worried about it as she was a twin and her twin sister passed away. Well she was always sick and had 6 ear infections starting around oct 07 lasting till her horrible one in April 08... agin this can be because of acid reflux I was told but she got so bad in April she stopped eating and drinking and ended up in 2 different hospitals and was put on a feeding tube to sustain her life... long sotry short they could find nothing wrong with her - she was 2 at that time - and they tested for everything. We did brain scans looking for tumors, we did endoscopies - 2 with nothing and then they did a 3 and took biopcies and found she had early warning stages for Celiacs even though the blood tests said no, she had no symptoms and she went to a ped allergist and had 105 pricks to the back and tested negative to any allergies. so we went gluten free and she has finally started eating some but it took her 6 months and she is finally at a decent weight of 26 lbs at 2 1/2 years old. We are still not sure that is what it is but without the biopsy we would not have even done what we did and if you do go gluten free the biopsy will not show if he had it or not. It was a quick procedure and the main concern in bring put under - unfortunatly my daughter has been put under 5 times in the last 6 months for tests they did and the last 2 she came out of it bad but ok. The last time we waited about 1 hr and they just unhooked the IV and let us take her home and she was in the care 5 minutes and stopped crying and slept.

Good luck and I hope things improve for you.

Sorry for rambling....

KaidensMummy Rookie
KaidensMummy
Posted
  • Author

I am so sad to hear about all that you & your poor little girl has been through....she sounds like a tough little girl :)

I did forget to mention in my above post that my son has had about 5 ear infections so far. I heard mention in a posting that Celiacs may have lower immune systems & therefore can get sick easier?? Not sure if there is any truth to that?

bear6954 Apprentice
bear6954
Posted

My son had a bioposy at 2 yrs and it was more scary for me than him. He does not even remember it. Our GI dr told us to go gluten free because my son was so malnurished. I would feed him gluten once a week to make sure that the bioposy would show something. It took 2 months for the bioposy appt and it was positive - very positive. Our GI dr was able to see this prior to looking at the bioposy under the microscope. His blood work came back negative for celiacs. A bioposy is the gold standard and I wanted to know for sure what he had not guess.

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