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Recently Diagnosed
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Hello

I was just recently diagnosed (received the call from the doctor with my test results last night, as a matter of fact) with Celiac Disease after over eight years of continuous illness. For years, I've been told that it's Irritable Bowel Syndrome and that I'd have to "live with it" forever...that's great for the doctor who doesn't have to put up with it, but I'm only eighteen years old. I'm hoping that forever is still a mighty long way off for me.

Anyway, my results showed that I have a "mild" allergy, whatever that is classified as and my mother, who hasn't yet done any researching of celiac disease and all things gluten free doesn't understand that when it comes to allergies, there is no such thing as truly mild. It is of her opinion that I should still be able to eat gluten, just in small doses. I'm assuming that this isn't true?

Can anyone suggest any good websites or books I could lead her to in order to help educate her?

My next struggle comes along with school. My doc put me on a gluten-free diet at the time that my blood tests were taken, just in case, and I've found how hard it is to stick to it, especially since my high school cafeteria has absolutely nothing except salad that doesn't contain gluten. I'll be heading off to college in the fall and have yet to decide what to do about housing and meal plans as a result of the dietary restrictions.

Any suggestions, reassurance that it's not as bad as it seems right now, or advice is greatly appreciated :D

Thanks!

Deb

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One thing to keep in mind - if you have celiac, you are not allergic, you are intolerant. Meaning not that your body goes through an IgE antibody mediated process to produce histamine and inflammation, but that your body goes through an IgG and IgA (if you're not deficient) mediated process that destroys the lining of your intestines. One molecule of any substance your body reacts to is enough to trigger the immune system. In the case of allergies, the majority of the time the reaction is limited enough that a small histamine production is not an issue. In the case of intolerances, the reaction still causes damage.

(And if you're mom thinks that it's just an allergy and you can still have some, ask her to talk to someone who grew up with a mild allergy to something (say, latex, it's notorious for this issue) and then one day ended up in the hospital with anaphylactic shock because the "mild" allergy got major REALLY fast.)

But, more happily, congratulations on being finally diagnosed! Knowing what the problem is can be SO helpful! Search around this site for a LOT of useful information. My MIL got me (per my request) the Gluten-Free Diet: A Resource Guide (http://www.amazon .com/exec/obidos/tg/detail/-/1894022793/qid=1075414579//ref=sr_8_xs_ap_i7_xgl14/103-9153272-5155801?v=glance&s=books&n=507846) for Christams, and I find it a good basic reference that is generally useful. I hope that you find yourself feeling better quickly.

As for the food - it gets much easier to stick with it and stay on it without much hassel with practice. You might have to get cooking, but with practice, cooking your own meals can be a simple process that need not take a lot of time or effort. (Plus, if you cook in larger batches, you can keep some in the fridge or freezer for days you REALLY can't cook.) As for college, ask if any of the dorms at the places you're interested in going to have a kitchen. My dorm had a kitchen the whole dorm shared. You'd need some of your own supplies (pots that aren't contaminated, your own food, cutting boards, knives, etc) but I got all that stuff myself even though I wasn't (knowingly or symptomatically) celiac disease during college. And most colleges will allow you to opt out of the dining plan for medically necessary reasons if you present them with a plan to make sure you do get enough food.

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It is of her opinion that I should still be able to eat gluten, just in small doses. I'm assuming that this isn't true?

Hi Deb, welcome to the board. Absolutely not, you should adhere to a strict gluten-free diet for the rest of your life, even "a little" gluten can and will hurt you.

I know right this seems very overwhelming but it will get easier, I promise. You need to read everything you can get your hands on about this disease and help educate your mom, knowledge is power! I too was diagnosed with IBS as I am sure a lot of people here have been. The good news is after going gluten-free I could feel a difference within a few days.

Here are some links to educate you and your mother and help you find gluten-free foods that you can eat. There is also a "Teenager" section on this message board

that would help you cope. I am sure they would have some suggestions for you as far as school / college goes. Also I would recommend finding a local support group in your area.

Gluten Free Products

List of Support Groups

Gluten Freedom

Planet Celiac.com

What it's like having Celiac

Gluten-free Food List

I hope this helps you and your mom learn more about Celiac Disease.

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    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
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