PWS and gluten

[shanjmac]

Hi, my 9mo. Dau has a very lg port wine over most of her body. It is everyplace but her face. Her physical therapist recommended that we get off gluten because it is inflammatory. Does anyone know of anything regarding vascular birthmarks and gluten? I just want to be informed before cutting something out of my family's diet.

[abatie]

You need to talk to your family doctor or a specialist. I would not take dietary advice from a physical therapist especially on someone so young that has definite nutritional needs. You have to remember where the therapist's training scope starts and stops. Sorry to be so blunt but this advice really worries me!

[missy]

Both of my children do not eat gluten, dairy, or soy. (Just my disclaimer, so you know where I stand on gluten!)

There is no WAY I would stop giving a child gluten on the say-so of a physical therapist. I do know that gluten can be inflammatory. Does your child have another issue, besides a birthmark? Why is she receiving PT?

But please ... talk to a physician about that. While no one specifically needs gluten, once you remove it, your diet can become very restrictive and the diet is difficult to follow (especially for children).

Again, just so you know ... the last time my youngest (almost 8 years old now) had a morsel of gluten (one small bite of a curly fry, the kind with seasoning on it) he missed two days of school and had a seizure. It is no small matter in our house. But we saw a pediatric gastroenterologist and got a scope and biopsies. We got allergy tests. We worked with a special needs dietician.

So, it may very well be that a dietary change could help, but

investigate, investigate, investigate.

Missy

[nickbar]

I agree with the above. People have strong opinions about diet and even though she/he might have been correct, it doesn't mean it is the right thing for your child. see your M.D.

[shanjmac]

Thanks everyone for the advice. I just want to do everything possible to help her. She is seeing a physical therapist because she wasn't/isn't using her right leg (opposite side of PWS) as well as a few other muscular oddities, mostly on the opposite side of the PWS. She just kind of drags the leg everywhere and is very stiff in her torso and neck. She may have some hip dysplasia (x-ray pending). We are hoping that it is not Sturg Webber. No seizures though. The physical therapist suggested Gluten because she was feeling a lot of inflammation and couldn't figure out why. I have not had her tested for anything yet because she is only now starting finger foods and any Gluten that she would be getting would come from my breast milk. I am going to call my Pedi now though. I really appreciate the advice.

[missy]

Let us know what they say. We don't want you to feel like you should do anything to hinder progress ... the PT may well be correct. Gluten can and does cause inflammation and, frankly, a good PT will help you troubleshoot that.

We just want you to dig deeper! And be safe at the same time.

Missy