Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

crunchgirl

Diagnosis Needed - Capital Region Ny

Recommended Posts

Hi I'm new to the board. I've gotten a lot of info via google from this forum regarding safe foods to give my daughter who has been on a gluten free casein free diet since she was 2. She was obviously allergic to dairy as a baby and then when she started solids all heck broke loose with the severe 'eczema' on her cheeks mainly. No bowel issues however.

I did an elimination diet and found wheat to be the second culprit. When we found out she had contracted my Lyme in utero at 2 and was also showing autistic bahavior, we went stricter with the Gluten-free Casein-free. Not a miracle diet but helped her behavior and I knew it helps the immune system and she needed to fight the Lyme. As her treatment for the Lyme has continued she is basically recovered from the cognitive issues from her Lyme and is no longer considered on the autism spectrum (extremely mild Asperger's). As a baby she had typical crappy allergy blood test that the pediatrician's do and the test said she wasn't allergic to anything. Well, she gets a bit of hay fever so I know that's BS right there in addition to her reaction to dairy which I am mildly allergic to and always have been (although I didn't know it and had a childhood of eczema and asthma.. yay!)

My husband had a "problem" with gluten/wheat as a very young child and was not eating dairy either... can't really get much info from his parents. They mentioned he would eat something and then it would be liquid poo pouring out of his diaper? (sorry) Doc said he'd grow out of it and he seems to have done so but I know better than that. I know they used to say that about celiac's? Husband also has Lyme (big ol happy Lymie family) but also has very weird issues with his arms... nerve problems/inflammation from shoulder down into his hands... not carpal tunnel, more like RSI. He had this before his Lyme infection. I think gluten sensitivity if not celiac.?

Before I was finallly diagnosed with the Lyme I had very bad colitis w occult blood among a million other things as I was dying. I had the colonoscopy and an endoscopy and while doc was down there he did a biopsy for celiac's which I was told was negative. No blood work done except a blood test that indicated Lyme Disease but this doc also said it was nothing SIGH. This was many many years ago now. Colitis cleared up as I started to treat the Lyme.

We both went on gluten free for months and I did casein free too. Wasn't that hard because I knew how to buy food and what to look out for b/c of my daughter. I felt no different... maybe a bit worse actually but my husbands arms did improve but there was also an unexpected medication change at the same time. Bowel issues aren't really a problem as long as we're good and take our probiotics since we take a lot of antibiotics to stay functional. We went off the diet to see what would happen. Hubby stayed the same... arms fine (must be med change) but I slowly got sicker even though on the diet I hadn't gotten better on the diet!! This was the second time I had tried the gluten free casein free diet and felt no different but I always seem to feel HORRIBLE for a while after going off the diet. It doesn't quite make sense to me.

We are willing to do this expensive diet if it would help our immune system, reduce symptoms, etc but if it's not doing anything forget it! But is this enough info? What am I not seeing??

I'd like a test to tell me... does my husband have celiac's or sensitivity (blood work at regular MD said no don't ask me what was done?) and does my daughter have it and how do I know if I have a sensitivity if not celiac's??

Any good docs in the area around Albany NY basically... We're willing to travel a bit. We already do in order to see doctors who have brains in their heads.

Thanks for reading!!!

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):