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Motherbird7

Member Since 24 Apr 2012
Offline Last Active Aug 24 2012 11:01 PM
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Posts I've Made

In Topic: Genetic Testing And Tissue Typing

23 August 2012 - 03:55 PM

***UPDATE***

We were finally able to recieve a copy of the family's genetic testing for my deceased sister's HLA tissue typing. It seems they did include DQ for my (living) sister with dermatitis herpetiformis and I who are both a perfect tissue match but apparently not for my other sibs.

According to the Histocompatibility Report we are (have?) DQB1 06:04 and DQB1 05:01


I believe it means we are DQ1/DQ1 (as explained by a nurse) and do not have the DQ2 or DQ8 markers associated with celiac.

Anyone have more explanations? Let me know if you need any other info off the report.


Thanks,

Jacobi

In Topic: I Used To Make Cakes...now What?

21 May 2012 - 11:02 PM

Alright, you have all been so helpful, but now I am hungry for cake too! lol I will check out the cake mixes you have so temptingly recommended.

In Topic: Genetic Testing And Tissue Typing

21 May 2012 - 10:56 PM

I'm sorry for your loss. I can't imagine losing my brother so young. :(

The genetic testing is sort of a moot point. We don't have all the celiac genes defined out very well (HLA-DQ is clearly not the whole story), and having a first-degree relative with celiac is a much stronger "genetic test" than anything you could get at a lab.

I'm glad to hear you're gluten free and that it's helping.


Thank you Skylark, I appreciate your kind words and also your comment about the stronger 'genetic test'. I have been able to relax about seeking more of that kind of testing and focus instead on the lifestyle I need to now live for my health and my children's future health.

In Topic: How Does Everyone Feel When They Cheat?

20 May 2012 - 09:58 PM

Sorry to say it, but in the 2.5 years since my diagnosis, I have never cheated, nor wanted to. If you keep eating gluten even though you know it will make you sick, I think it would be very helpful for you to reflect and figure out why. Here are some ideas for you to think about:

- Can't eat family favorites? Post some recipes and we'll help you convert them.

- Gluten-free is not as convenient? We can give you ideas for grab-and-go foods.

- Gluten-free food too expensive? We can give you ideas on how to get the costs down.

- Don't know how to cook tasty gluten-free foods? We can help you find easy, delicious recipes.

- It's hard to eat out? Tell us what you like to eat and we can help you get a safe meal at a safe restaurant.

- Don't know what to eat? We can help you learn to read labels.

- Don't know how seriously sick you can get from eating gluten? Let some of us that nearly died before diagnosis tell you how serious it can get.

- Don't have the will power? We can help you with that too.

Hope this helps.


I am crying reading this because I am so grateful for you and this community who ARE making it emotionally so much easier than I was afraid. I am turning to this forum on my down days when I am scared, and on my up days when I feel confident I can learn and adjust to something new. While I technically have probably still been exposed to gluten since I am only 3 months into it and not stressing too much about cross contamination, I am aiming to be %100 as soon as I can learn how and maintain habits that keep me there.

I worry if I am getting gluten I don't notice but so far the times I realize I goofed, I have definitely had symptoms. In fact, I was wondering today if feeling pessimistic about being gluten free might actually be an early sign that I was glutened because most of the time, when I am feeling good, I don't feel that being gluten free is so hard and I have more confidence that I can do it...with help of course!

In Topic: Spouses Who Suck

20 May 2012 - 09:40 PM

How many of us read about the gluten free girl and her love story with her chef, and now the bar is set impossibly high for our mates?

They try their best, but they are not the Chef, who to be honest is really, really a dreamboat and a sweetheart, he made his whole restaurant gluten free for her.

And on some level, I think we all want the Chef. I'm a gay woman and I want the Chef!


HaHa I just read about the Chef and was trying to figure out how to get to the restaurant since I live in the same state! While I am lucky to have a husband who suggested the whole family be gluten free to make it easy on me....as if making enough gluten free bread to feed 9 people was easy! lol...I am realistic enough to know he will want his pizza and his donuts and his secret candy stash etc. and won't necessarily 'get it' completely.

After reading this thread I talked to him about the issues, so thanks for bringing it up...he suggested he would eat gluten free when we are alone for a date, but I would relax when we eat out with other people and he will pack a teeny toothbrush for after dinner.