I Got My Test Results...

[SUZ42]

Hi.

I got my test results today. I said in an earlier post that I wasn't "wishing" for an illness, but if it turns out I do, I will be happy to finally have an answer for being soooo sick for 14 months. Now I have a name for how I have been feeling. Gluten sensitivity and Casein sensitivity!

Thinking back, I have been sick with this my entire life. Started taking prescription constipation meds as a baby. My first memories of my mom and dad are in the bathroom. Sick huh?

I also now know my mom had this. My sis and brother are both sick, with different things but all symptoms of GS. Also my 20 year old dtr. ADD, Asperger's, joint pain, tired, stool probs... I will get the gene test on her done. And advise my bro and sis to also.

But, here's my question: We are going on vacation in March and in June (to Disney World) should I start the new diet now or continue to be sick and wait till July to start it? I have read here how several folks went gluten free, and then got really ill if they were glutened. So?

question 2: I will be contacting the lab also, but thought someone here could help me. What is the molecular analysis, Allele 1 0302 and Allele 2 0301? And the HLA-DQ 3,3 (subtype 8, 7)?

Thanks

Suzanne

[CarlaB]

Disney is one of the easiest places to go and eat gluten-free safely! I've heard all kinds of stories here about wonderful trips to Disney with gluten-free Mickey Mouse pancakes and other tasty food.

I've also heard that all the restaurants on the property they own have to accomodate people with food allergies.

[carrielynn]

We went to Disneyworld about a month ago and had no problem at all with the Disney restaurants. At every single Disney restaurant we went to they brought the chef out who told my husband what he could and could not eat. At one of the restaurants they sent very hot (freshly made) gluten-free rolls to our table along with the meal. (We told every restaurant ahead of time of our food needs and our information was put into a computer so when we checked in the hostess knew what was going on.)

We were very impressed, to say the least. Disney deserves huge praise for the attention they've given to this.

[kelliac]

question 2: I will be contacting the lab also, but thought someone here could help me. What is the molecular analysis, Allele 1 0302 and Allele 2 0301? And the HLA-DQ 3,3 (subtype 8, 7)?

Thanks

Suzanne

DQ3, subtype 8 is one of the main celiac genes (known as DQ8), DQ3, subtype 7 is one of the gluten sensitive genes. So you have two gluten sensitive enteropathy genes (one formally known as celiac and the other known as the catch all gluten sensitive) and all your children (if you have them) will have at least one gluten sensitive or celiac gene. This info is on the enterolab site under test interpretation, FAQ, etc. Best wishes and welcome to the celiac world!

[SUZ42]

DQ3, subtype 8 is one of the main celiac genes (known as DQ8), DQ3, subtype 7 is one of the gluten sensitive genes. So you have two gluten sensitive enteropathy genes (one formally known as celiac and the other known as the catch all gluten sensitive) and all your children (if you have them) will have at least one gluten sensitive or celiac gene. This info is on the enterolab site under test interpretation, FAQ, etc. Best wishes and welcome to the celiac world!

Thanks for the best wishes. I am glad I found this site. I don't feel so alone in this anymore. I talked with my sister, she has already called her doc to look into this. She is quite the gourmet cook, so giving up gluten will be really difficult for her.

My daughter is resistant to going gluten free, she's 20 so I can't make her. I asked her if she ever wants to go through what I have this past year or so. She's of the mindset it won't happen to her. Time will tell.

Turns out I am also casein sensitive. This will be more difficult to rid from my diet than the gluten, I think. It'll be trial and error for a while.

Suzanne