Quick Question

[mmcc54]

so a quick history...my one year old was failure to thrive her pedi sent her for a blood panel which was positive...only TTG IgG was positive at 16 (anything over 9 pos) she had a neg biopsy, when I asked the GI why her blood work would be pos and that neg he said well her blood was only slightly pos but to go gluten free for 3 months and come back for a follow up?!?

Sooo she was doing great for about 2 weeks even gained a pound!!! This past Saturday we took her to the ER she had awful watery/bloddy looking BMs (it tested neg for blood though) they said it was most likely something she ate that had gluten in it...turns out they were right..grand parents gave her French fries at a restaurant..those French fries were fried with chicken fingers= cross contamination...her Pedi is convinced she has celiacs...but her GI doesn't think so. During this little bit of time she was exposed to gluten she lost 5 ounces also...would you have such a severe reaction to gluten if it wasn't celiacs??

[notme]

if she had a positive blood test, (not to mention she seems to be thriving gluten free!!)  you're the mama, you see the results of her getting glutened.  you're her first defense and her last resort as a parent.  even her pedi thinks so.  he can do follow-up blood tests, etc, can't he?  i would either get a better GI or be done with testing her and call it celiac.  that is my opinion from one mom to another

 

honestly, i think these doctors would rather keep people guessing so they can make the $$$$$$$$$$$   :(  and that is just sad...

[tarnalberry]

What does the GI think it is?  She doesn't have gluten, she's great.  She does, and she's sick.  uh.... DUH!

[tommysmommy]

So think of it this way...when your little one was eating gluten - her body was creating powerful antibodies to fight the gluten (something her body saw as a foreign invader), the gluten was causing damage but the gluten was held somewhat in check by the antibodies. Eliminate gluten and her body quickly starts to reverse damage & stops building antibodies to fight it. Reintroduce gluten (cross contaminated fries) and bam - antibodies aren't there to fight the invader and it makes her sicker than she was before. She'll rebound faster, but got to keep that gluten away - her little body knows its a toxin & doesnt have the means to fight it anymore. It's the same with adults fyi.

[mommy2krj]

Hugs mama! We are in the same boat....positive tTG test but negative biopsies....though there was scalloping in the intestines that the GI doc saw. We are to be on a strict gluten-free diet for the next 3.5 months and then a check up too. So far my son's reactions aren't as severe as some I have read about, so I am thankful, but also a little fearful of what the future holds as far as that goes.

[nvsmom]

...would you have such a severe reaction to gluten if it wasn't celiacs??

 

That sounds like a gluten sensitivity reaction to me.  Many celiacs have symptoms that severe, and many don't. Symptoms are very individual which is part of the reason it is tough to figure this disease out. When I get glutened, I tend to gain weight, get migraines, become more tired, get stomach aches and bloating, lose hair, and develop arthralgias in my joints.

 

Non-celiac gluten sensitivity (NCGS) can also cause the same symptoms and really negatively impact a person's quality of life.... but your daughter had a positive DGP (which is only positive when her body is working to damage her intestinal villi) so she has celiac disease rather than NCGS.

 

You might want to try avoiding eating out with her. It is really easy to get glutened in a restaurant. It is a hassle to pack food where ever you go, but it will probably be safer for her.

 

I hope she is back to feeling better (on the gluten-free diet) soon.