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Centers For Celiac Disease

Worriedtodeath

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Worriedtodeath Enthusiast
Worriedtodeath
Posted

Our ped has decided to support the gi and go with a wheat allergy/casien allergy for our negative Celiac blood and biopsy 22 month old. SHe did disagree with feeding her wheat and suggested we do the Gluten-free Casein-free diet for the next 6 months and then reintroduce wheat. If her symptoms return, then she wants to send us to Duke univeristy (she called it some really big word that begins with a t but the meaning was call in the big guns who have the best of the best and identify all sorts of crap unknown and unheard of. I just can't think of the word.) :rolleyes:

Only problem with that is of course the obvious - gluten sensitive child is going to react and unless we do this for 6 months or so won't get a enough damage to have a positive - so that is a stupid idea anyway. But since she has mentioned notching up the dx procedure to Duke(they are ranked # 7 or 8 in GI centers but that doesn't mean they believe or support early Celiac dx), I wanted to see if anyone had any opinons on that.

I looked thru their website and found not one sentence devoted to Celiac. Plenty on IBD and Crohn's. DOes this sound like a place to take your child in the next step? Are there better centers that specialize in Celiacs? I live in Sc so Ga, Tn , Fl, Nc, are in 3-6 hour drive depending on where. If I need to borrow money and fly her somewhere we can look at that opition.

What I really wanted and have no luck getting this done is to have the samples from her biopsy sent to a Celiac lab and relooked at by better pathologists. Does anyone know how I can get this done without the help of the ped? The gi certainly isn't going to cooperate in that either.

We have been Gluten-free Casein-free and at her followup yesterday she had gained a pound and 1.5 inch from LAST MONTH!!! So mommy is doing a better job than they are in taking care of my kids. My ped did admit and she is great dr who at least is still firmly convinced she has Celiac but we are not able to "prove " that that my whole family going back to several generations may have a dx that currently doesn't exist. We are Negative Celiacs and there doesn't seem to be any other dx that has set markers and dx tools at this moment. There are several things floating around but not things recognized by the almighty insurance company.

ANyway.... in six months when this comes up I wanted to be ready with my thoughts on this (which of course is hell no ) but need to make sure I am not shooting ourselves in the foot either.

What centers are better or best at handling Celiac cases? How would I get samples sent elsewhere? Or do I just give up and stand firm even to beloved hubby who tends to follow dr orders.

Thanks

Stacie

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Ursa Major Collaborator
Ursa Major
Posted

Stacie, you are not going to feed this child gluten again, ever, right? The problem is, that no matter where you go, they will want you to do that. Nobody in the medical profession seems to see that it is TORTURE to feed a child gluten who is obviously gluten intolerant!

Would those doctors eat something that they know makes them very ill? I doubt it. But they have no qualms about telling a mother that she HAS to feed her kid something that will stunt her growth, give her diarrhea, make her ill physically and mentally. Don't they see that is cruel?

Why don't you just have her tested by Enterolab? At least then you have something that proves she is gluten intolerant, that you can print out and show to people as proof that this child cannot eat gluten, ever.

You must be getting so frustrated! If I was you, I would just put it all behind me and just concentrate on the positive changes, and enjoy your 'new kid', thanks to the gluten-free diet. Forget about doctors and testing!

It is important to get a note from your doctor for school, stating that she can't eat gluten. It sounds like your doctor is willing to provide that. So, you should have no problems, even without an 'official' diagnosis.

itchygirl Newbie
itchygirl
Posted

Medical University of South Carolina is where I went. Their website has celiac information

Open Original Shared Link

Duke just told me I had IBS

I don't know why your ped would want to pack you off to Duke when you have a world famous digestive disease center right there. :huh:

You always have the right to a second opinion on biopsies. And a third opinion.... The GI may not want to co-operate, but they have to. You paid for the biopsies, they are yours and you can do with them what you wish. That is the law. I had a piece of liver that went to four different medical centers and now resides at the Mayo in Minn. My liver biopsy has seen more of the US than I have :lol:

Worriedtodeath Enthusiast
Worriedtodeath
Posted
  • Author

I won't ever feed her gluten again. As for hubby he would do what the drs said but he will have to quit work and take care of her because I will not clean up another pool of crap off the floor that came from my child ever again. So he won't either. Those 96 days were pure hell. She had a sick visit during that time for an ear infection and the ped admited yesterday that she was going to have to do medical intervention of some sort at her well check (in two months) because she was going down hill that fast and furious and she felt she would be so sick by then that she would be forced to step in with something and save her. I feel the ped has her best inerest at heart but doesn't have any other resources to "fix" her. I'm making one last ditch effort to see if I can get the samples we have sent to New york or Chicago. If not, then I will just let the whole thing drop. Hubby will forget about it by 6 months and I'll jsut nod and be polite at the dr visits. All of the kids are Gluten-free Casein-free and I asked my oldest (1o years old) if he wanted to go back on gluten (he tested negative too) his response is a keeper - "NO! no way mom. I don't ever want to feel that bad again even if there is no reason to feel that bad. I'd rather be crazy and feel great than sane and be sick."

Out of the mouths of babes!!!

I was just hoping we could get a second opinoin on what we do have because gluten is out of here for good.

Would entrolab really be able to test a child this young who's been off of gluten all ready 8 weeks?

THanks

Worriedtodeath Enthusiast
Worriedtodeath
Posted
  • Author
Medical University of South Carolina is where I went. Their website has celiac information

Open Original Shared Link

Duke just told me I had IBS

I don't know why your ped would want to pack you off to Duke when you have a world famous digestive disease center right there. :huh:

You always have the right to a second opinion on biopsies. And a third opinion.... The GI may not want to co-operate, but they have to. You paid for the biopsies, they are yours and you can do with them what you wish. That is the law. I had a piece of liver that went to four different medical centers and now resides at the Mayo in Minn. My liver biopsy has seen more of the US than I have :lol:

MY GOD !!!!My ped is one of the trainig drs who works with interns and residents at that very school!!! What is up with that!!! I didn't know that about the samples. I'm on that so freaking fast!! THey can't destory them than can they??

Worriedtodeath Enthusiast
Worriedtodeath
Posted
  • Author

Oh the address says Charleston that may be the reason. We are in Columbia where they have a med school too. I forget about the one in Charleston. Popping out emails and taking numbers now. Thanks!!!

itchygirl Newbie
itchygirl
Posted
MY GOD !!!!My ped is one of the trainig drs who works with interns and residents at that very school!!! What is up with that!!! I didn't know that about the samples. I'm on that so freaking fast!! THey can't destory them than can they??

They better not destroy them, they have to keep them for seven years (or longer)

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Worriedtodeath Enthusiast
Worriedtodeath
Posted
  • Author

Bad news -Musc shut down for Good Friday

Good news - lab in Greenville has the blocks and slides and maintains them for several years!!!! Whoo hOo! AT least I can say I sent them everywhere and had them read by all the latest 2008 had to offer! THen I can drop it and just keep on doing what works.

Thanks

Stacie

Ursa Major Collaborator
Ursa Major
Posted

Yes, Enterolab is accurate even for young children, up to a year after eliminating gluten.

I am glad you will not put her back on gluten for anybody! Your son is a wise young man.

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