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New Here W/some Questions

jacksmom

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jacksmom Newbie
jacksmom
Posted

Hi there,

I've got a few questions or concerns... I'm 35yrs old & all my life my mother has told me that I had Celiac as a child... I was never put on a gluten-free diet or anything.. I just always knew I had it as a child but never researched it.. a little history on me.. I have had recurrent pneumonia & bronchial problems since I was 5yrs old, which now my 5yr old son has.. he just had his 5th pneumonia this week.. the second time in a month.. he is being seen by a pulmonary specialist next month.. what brought me to this site was doing a search for "recurrent pneumonia in children" on a search engine... it struck me that I was told I had Celiac... after talking to a few people they commented that it's not something you get rid of.. you should be on a strict diet.. hhhmmm... here's the thing.. I don't have GI probs and I am overweight... I do get bone pain, confusion etc...

Well, my son usually has loose stools and in the past few months has complained of an itchy back.. I've noticed small bumps all over & have had him checked.. they said they were hive like.. he has also had excema since infancy.

I'm not sure if any of this is related.. another similarity that we have is that we are both carriers of the Cystic Fibrosis gene.. he was tested as a baby , having seen something on his blood tests at birth.. so my husband & I were tested.. I am a carrier.. my first cousin has CF ... well, I guess I'm just looking for a word of advice.. I'm going to print out all the info for his doctor appt.. at this time I'm more concerned for him & his little body.. he is very thin.. for a while we were having his weight checked.. he has been gaining, but not as much weight as you would think by the amount of food consumed.

So, please, if anyone has had experience w/any of the above, please let me know... I may be way off base, but you never know... my pedi as a child may have misdiagnosed me also.. did they know of the gluten-free diet back in the early 70's?

Thanks for listening!

:rolleyes:

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3boyzmom Newbie
3boyzmom
Posted

I'm new to this as well, I also have a 3 1/2 year old boy.

In response to did they know about Celiac's 20 - 30 years ago, I had a conversation with a girlfriend whose 34 year old brother was labeled a Celiac baby... they put him on a special formula and told the family he would grow out of it. He has always been thin, prone to illness and has had stomache problems. He just figured it was just the way he was...

They knew about it, but the same as today, they apparantly didn't know enough.

I would ask your doctor to check into screening for Celiac's for both you and your son... it would help to answer a lot of questions.

There is a lab, although controversial you can do a search on this board to find recent discussions on them, Enterolab, that does a series of test... it may or may not be covered by your insurance.

I myself am in the process of having my son tested...

Hope others have more helful info for you...

Just wanted you to know you are not alone! :D

jacksmom Newbie
jacksmom
Posted
  • Author

Thanks so much for replying.. good luck with your son & keep me posted. I'll do the same.. we're going thurs to his follow up for the pneumonia & I'll mention it then.. thanks! :)

Laura Apprentice
Laura
Posted

Jacksmom,

It sounds like both you and your son should be tested for celiac disease and/or go on a gluten-free diet. Definitely when your son goes to the doctor, ask about testing for celiac. I know how hard it can be to be assertive with a doctor, so if it helps, print out a lot of information and bring it with you, or write down your questions in advance so you don't get flustered and forget them.

As for you not having GI problems and being overweight, that can happen. I was overweight by a little until I stopped eating gluten, and there was nothing I could do to lose the weight. Not working out five days a week, not eating less. Stopped eating gluten and lost 10 pounds, even though I eat all sorts of fattening gluten-free things. And I wouldn't have said I had GI problems, certainly didn't have constant diarrhea or anything like lots of people do, although I have found that since I've been gluten-free I've had a lot less bloating and gas and so on so it turns out that not having GI problems is a relative thing.

Some people get joint pain, I think, and mental effects like anxiety, depression, and "fogginess" so your confusion might fit in there.

Going gluten-free is a big hassle, it's true, but if your son could be healthy, and you could feel lots better than you do, it could be SO worth it.

jacksmom Newbie
jacksmom
Posted
  • Author

Thanks so much for replying... every bit of advice helps.. I'll keep everyone posted after thursdays appt :)

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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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