ISO: To con't on Barb_b & more with friends & DD's new medical condition - ISO & Poll

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music-city-missy

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DD is only 19 but has more than her share of health issues. After a whole semester of telling them she was sick and them telling her she had allergies (8 campus clinic visits, 2 other clinic visits, and 1 visit to ENT with allergy testing scheduled until she had to withdraw Thanksgiving) to find out that she had recently had mono and still had Strep Group C which is as dangerous as Strep Group A. Of course she's got the rare eye disease. Well her back was hurting just before she left for college last year and she was diagnosed with myofascial pain syndrome. Well, looks like it's fibromyalgia. Spring break is next week and we've already got her scheduled to see our primary care physician Monday at 11 to make sure, confirm, or find something else causing this. She can barely get out of bed in the mornings and as we researched, it all makes sense.

So several coworkers or their spouses are all having heart issues. One was already watching what they ate so closely after his double by pass 18 months ago and they took him to the ER and come to find out, one of those was already 100% blocked again and the other like 68% blocked.

So here are my questions/polls/requests for help.

1) What is processed? Where do you draw the line? The doctors have told my friend no processed foods. He even told them not to use things like whole grain breads, etc. If you buy good quality ground whole grains/flours, etc. to make your own breads - is that processed? If you grind your own grains to make flours - is that processed? This doctor and nutritionist have told them and worded it so that they are scared to eat almost anything at this point.

Anyone with experience with fibromyalgia diets - comments, experience, recipes welcome. DD cried when I told her gluten looked to be a main culprit at making things worse and she LOVES her breads and pastas. I have a box of quinoa pasta but haven't tried it. I want to have some good tried and true dishes to make her feel better when she comes home. She loves my mac and cheese so Traca - can you share at least some hints on how to make a gluten free mac and cheese?

If the diagnosis is confirmed, we are going to make an appeal to the university to allow her to live off campus next semester (she'll still be considered a freshman because she withdrew completely last semester) and get it where she doesn't have to have a meal plan because I KNOW that is full of processed junk that is making it worse.

I am thinking with an apartment we can get her a really good bed, she'll have a tub to soak in, can control the temperature better, and we can put a small freezer in that I can make up dishes to meet her special diet because Starkville, MS is a SMALL town and she won't find gluten free prepared foods and probably not even much in the way of ingredients. She's even said that maybe this will help her get excited and learn a little more about cooking - she contends she can cook, she just doesn't want to do it when she has me to do it.

 
Unviersity food service

I am not sure what food service is provided on campus, but most will accomidate even the most restrictive of diets if approved and directed by physicians, the school (deans, etc.). It may not be possible, but ask. The University's food service (Aramark) where I worked for many years provided vegetarian, vegan and gluten and soy free options. All you had to do was ask.

That may not be the total answer, but might help.

 
There are such marvelous gluten-free products now and most of the restaurants here are offering

gluten-free dishes on their menus. Gluten-Free Girl is a really wonderful website:
http://glutenfreegirl.com/

Her peanut butter cookies are REALLY good:
http://glutenfreegirl.blogspot.com/2006/10/yum-yum-peanut-butter.html

The Glutino line of products is terrific - my sis and I made their pie crust and the family actually preferred that one to our usual homemade one.
www.glutino.com

King Arthur has a brand new line of gluten-free products, although I haven't tried them yet:
http://www.kingarthurflour.com/glutenfree/

If you have a Trader Joes, they carry tons of gluten-free products. You can also do a search here for "gluten-free" or "gluten free" and come up with recipes.

As far as pastas, I know the one my sister uses is really good, so I'll ask her what it is. It might very well be that quinoa pasta. It might seem hard at first, but it gets easier as you discover all the great products they have on the market now.

 
My BFF is gluten intolerant andshe guided me to this AWESOME blog

http://glutenfreeday.com/

I love this blog and I use her recipes when I need to cook anything gluten free.

Like you, I live in a place were the selection of gluten free products are very limited, but I have found that many health food stores carry a selection of bread mixes and gluten free flours and breakfast cereals. Also, I drive 1,5 hours to another town twice or three times a year were the selection is much better and I stock up on gluten free products. I think that when you are gluten intolerant, you might have to stock up on flours, pastas and such if you live in a place were the selection is limited and you have to drive to another town or city to get what you need. My friend also bought a bread machine that has a program for making gluten free bread. She uses it every week, sometimes several tims a week, and she loves how the breads come out.

http://glutenfreeday.com/

 
I think you can probably order lots of these products online, too.

BTW, a cousin's daughter has many of the same symptoms as your daughter and it turned out that she had Lyme disease. Have you tested for that? Just a thought.

Good luck!

 
MCM - yes, it is the quinoa pasta that was so good...various companies use other flours that are YUK

 
wow sounds very similar to what we just went through

We've been going through this for almost two years. After the end of her first year the school basically said she (my oldest daughter) should consider not coming back. We spent the whole summer seeing doctors and having pretty much every possible test. We thought she'd made progress on a gluten free, soy free, dairy free diet. Then we find out she's been passing out every day sometimes several times. She still wanted to stay at school but again the school tells her not to come back unless she is considerably better. Their reasoning - she is a distraction to other students.

Three import things we found out about "celiac" is that

1) many celiacs are also allergic to dairy.
2) And many are also allergic to Soy. Unfortunately a LOT of the "gluten-free" products contain soy.
3) A lot of supplements - vitamins etc, also often contain gluten, soy and occasionally dairy related products.

Recently someone encouraged my wife and daughter to explore Lyme Disease. Apparently some of the testing - especially on the west coast is not reliable because it only tests for a very specific strain which is not often found on the west coast. In any event, they went to hear a talk and someone recommended a supplement which they had had very good results with. My daughter took it and ended up in the emergency room. The supplement not only contained gluten but also included both soy and dairy elements. For her even a small breadcrumb will knock her out. Seems like her soy allergy may be even more severe.

 
I haven't even heard of this bakery

My former professor wanted to start one here and hasn't gotten around to it. Looks like someone might have beat him to the punch.

There is another one that we tried and even their non-gluten free stuff was HORRIBLE and I mean HORRIBLE. The icing wasn't even edible. I'm scared to even give that place another try.

 
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