Getting a DX for the college years?

[ozarkhomesteader]

Hi,

I'm mom of 6 children. We're all (including hubby) gluten free. My 2 sons are autistic and GF has helped them much, so I don't care that they don't have a celiac dx. I was DX'ed with DH as a child, but celiac was never mentioned. Only when my 6 yo daughter was diagnosed w/ celiac 2 years ago did I realize that DH could be managed with a gluten free diet. At that time the whole household became gluten free.

My oldest daughter is planning for her college years and would like to spend this next summer eating pizza and get tested for celiac. Her reasoning is that if she has the DX, then the college dietician will help her be able to eat at the dining hall. If she tests negative, she won't have to spend the effort maintaining a gluten free diet.

My concern is that a summer of gluten eating may not be "enough" for a positive test (if she is indeed celiac) and she'd have a false negative and spend the next 4 years damaging her guts

Any experiences in this area? Anyone know gluten free friendly engineering schools?

Thanks,

Lisa in MO

[aklap]

Hi Lisa,

Wow - that's quite a story. With your family history, I'm not so sure it'd be a good idea for her to do that. As you probably know CD is genetic. People carry the gene that pre-disposes them to the disease. Then you need a trigger to set it off - usually an infection or illness.

So the dietician will only help her if she has an offical dx?? If that's the case, I might question the school about that. You might also talk to the dietician to see what their knowledge level is of CD. Please - do the research and gather info - it may help your case of getting them to help her w/o and offical dx. I know it's hard w/o an offical dx. I went thru myself. Ultimately you have to let your body decide. Do I feel better w/o gluten?? If it's yes - you have your answer. It's hard enough for an adult to wrestle with that. For a teenager - it has to be extremely difficult.

As far as a gluten challenge goes. If I remember correctly you must be consuming at least 35g (a bagel) of gluten at day for 6 wks. Do you know how they were going to test her? Blood or Biopsy. Blood work is not always 100% accurate. If you get a false negative - she starts eating gluten....you are right to be concerned. As for the biopsy - if she does not have the damage yet - the medical profession will say No CD you can eat gluten...still in the same boat. No only will she be damaging her gut - but her entire body. It will also put her at risk for other autoimmune diseases, cancer, and a host of other things.

I won't get into too much here, but there are other tests. The cutting edge (and not widely accepted) Stool Tests and also Genetic Tests to see if you have the gene make up for CD or gluten sensitivity (different genes). The link below for more info on testing.

You might take time to look thru The Gluten File. There's a lot of info there - well worth the time. Don't miss the Diagnostic Testing post.

Good luck!! I hope this helps...

Let us know how things go!!

ps - just wanted to add a link to an autism board: http://brain.hastypastry.net/forums/forumdisplay.php?f=91
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Guest]

Wow! Thanks for all the info...and I thought *I'd* done some research

I guess our biggest reason for wanting to go after the elusive DX now is that we have a doc we're working with for the boys and he's very good about the gluten free concerns. I hadn't thought, though, about the autoimmune concerns (from some of the gluten files links). We do have both MS and diabetes in our family as well (surprise!) and I'd hate for her to "jumpstart" anything with her gluten consumption. I do believe that she is celiac....guess I'll see if the doc will work with us based on her history.

Thanks again,

Lisa

[aklap]

[ozarkhomesteader]

Oh...no, I didn't mean that at all! Only that I really have researched over the past few years and there's still so much more I don't know yet. Those links you provided had a lot of info that I'd not come across. I guess one never stops learning

That's what I love about our new doc..he freely admits that he hasn't done research on this or that topic and lets me bring in the print outs from NEJM or whatever I've found and he really follows up. He says we're learning together and that's such a breath of fresh air in our experience.

Thanks again for your advice,

Lisa

[aklap]

There's usually some research being done somewhere on this. It just needs to get into the hands of the people that needs it most (us and the medical profession!!!)

That's great about your doc. I have a neurologist like that. I wanted to explore gluten as the possible cause of my peripheral neuropathy - he said "OK - you're the expert on this - what do you want me to do".

Good luck...keep us posted on how things go!!!

Wow - an engineering student!! Waaaaay beyond my mental capacity!! LOL!!!
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[daughteroftheking]

I am not sure if this will help you at all, but I was diagnosed with Celiac while I was in college about 3 years ago. I had been on the meal plan at my school and eating all kinds of wheat stuff that was killing my insides! I had been sick for quite a while and very malnurished. After I was diagnosed, I got off the meal plan (and my college reimbursed me for ALL of the money - couple thosand dollars if you can believe it) and that was more than enough to pay for my food (including gluten free stuff). I lived in a dorm my entire college career - and cooked in our common kitchen. I just had to be extremely careful with using it (as people didn't always clean up very well!). I did have a little refriferator that I kept in my room so I could keep my food seperate from others. The school also allowed me to have several drawers all to myself in the kitchen so I could keep non-parishable things in there. It wasn't always easy, but it seemed to work well for me. I usually tried to cook something on the weekend that would last me several days so I wouldn't have to cook every single day. It helps if parents are supportive as well and close enough so they can help w/ food sometimes too. I ate a lot of pasta (corn or rice) veggies, fruit, rice, and fresh meats. It was pretty hilarious because many of the girls that lived around me were always jealous of what I was cooking/eating. After a while, once most of them knew about my diet, they always came down to the kitchen and were like "So what's for dinner tonight?!" Most of them were pretty supportive of it. Anyways, if you have any questions or concerns about eating gluten free and being in college, please feel free to write anytime. I 've been through it so I can relate first hand!

Jessica

[Kristi]

Feel free to get a hold of me as well, I am GF and in college and I am also dairy free. I do not use the meal plan, but school is more than willing to help!

[mrshmello]

I am a college student in florida but i still live at home and i also cook all for myself and eat alot of pasta (rice) and alot of chicken. i also found gluten free frozen dinners at whole foods and I eat thoes alot.

Christi
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I think restraunts should have gluten free menus with good food!

[paw]

The University of Michigan says on their website "Contact the dietitian for Gluten Free diet needs". I don't know how good they are about providing safe food for the dorm residents.

I suggest you check with the housing and meals department of any schools your family is interested in attending and see what they can offer in the way of support for CD.

[debi4956]

Hi..I am a proud Mom of a somewhat new Celiac. Brit was diagnosed in Oct. of 2005 so, we are just under a year. Finding a college to start this year was quite a task because we wanted to be certain that her diet could be handled. We are so pleasantly pleased. Brit is enrolled and loving Illinois Wesleyan in Bloomington, IL. The head chef of food services has made Brit's dining experience the least worry of her college life. He has provided her with her own plated food for her meals that she picks up in the kitchen. She is able to eat with all her friends and also has a place in the fridge in the kitchen where she can store her own favorites. She has been just fine..no symptoms except for the one day she decided to take a couple fries off a friends dish.She had to pay with a three day stomach ache for that! But, I would highly recommend anyone who is looking to apply to colleges this year for next fall to apply to IWU. They have made this Mom's worries worry-free! Well, about food anyway! Haha!!! Feel free to write me with any questions. I know how hard this process is for kids with CD..DEB
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My 17 year old daughter was JUST diagnosed with CD..Knowledge is Power!