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Sarunski

New To Celiac And To The Forum

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Hey Everyone,

I was diagnosed last week after having three years of horrible symptoms. At first I thought it was grease, then maybe it was a soy allergy (everything in my school cafeteria is cooked in soybean oil), but as the years progressed it just got to the point where I couldn't stand it anymore. I had been fine until so much stress hit me that my body just sort of went into overdrive I guess. I haven't been able to get an answer on that one. My doctor called me in and told me that I definitely had Celiac based solely on blood work. My Gliadin Peptide Ab, IgG was 78.6 H and he told that was higher than he had ever seen, but wouldn't elaborate on what it meant and told me to go gluten-free. He kept saying he wasn't an expert and he basically left me on my own and I had no clue where to turn. I'm 21 and going into my senior year of college. While it is great to finally have an answer, I'm still at a loss in some ways. I don't know anyone else with this problem and my friends are barely supporting me. I try to focus on the positive like what I can eat, but everyone around me seems to think the opposite. My mom also has it in her head that when I am gluten free for a while I can start adding some things back in that do contain wheat or gluten. Is this wise? Or would it be worse after not having had it for awhile. I'm so lost and any feedback, pep talk, or advice would GREATLY appreciated.

Thanks! Sara

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Welcome, Sara,

Your mom is wrong. The only treatment for celiac disease is the adherence to a fully gluten-free diet for life. It seems daunting at first, but it gets easier. I have been gluten-free for more than eleven years. I haven't intentionally ingested any gluten in that time, but many have reported increased sensitivity to accidental ingestion after being on the diet for a while.

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Peter is absolutely correct! You MUST remain gluten free for life, and many of us report very heightened negative responses when we accidentally eat gluten. You can certainly use me as an example of this. I've been gluten free for more then seven years, and five years ago I was accidentally glutened. The result was that I had to undergo intravenous iron infusions on a weekly basis because the part of my small intestine where iron is absorbed was destroyed. I had to do this for two years straight. Then a year and a half ago, I got glutened again, and both of my feet fractured a month later because of malabsorption of nutrients that I needed for tendon and ligament health. Without proper support from my tendons and ligaments, my bones fractured, and I was in a walking cast for many months until I finally figured out which nutrients were to blame. The doctors, of course, were clueless, so it took longer than it should have to correct the situation. Even now, one of my feet still becomes painful at times due to tendon damage. So....you see, heightened sensitivity to gluten, which may occur from eating gluten free for a long time, can cause horrendous physical impairment. Please let your mom know that, although the diet may be difficult for BOTH of you to handle, it is absolutely necessary for you to remain gluten free at all times. My mother actually felt the same way until she was diagnosed with celiac, too. We both have no problems whatsoever cooking and baking gluten-free meals. Stick with natural foods, rather than processed ones, and you'll feel healthier from the added nutrients...and you'll have less of a chance of getting glutened.

I realize how hard it is to follow a gluten-free diet in college. My daughter was the food manager of her dorm in her senior year, and when a freshman approached her about her celiac requirements, my daughter told her she was lucky to have landed in the only dorm headed up by a "gluten-free expert," since her grandmother, mother, and brother all have celiac. More and more colleges are becoming aware of the need to accommodate a gluten-free diet, and you might wish to discuss this situation with the food services director or directly with the chef.

You may not be aware that some "regular" processed foods are gluten free. You can eat gluten-free Rice Krispies (specially marked), gluten-free Chex cereals (also specially marked), and Cocoa Pebbes or Fruity Pebbles (but not the ones with marshmallows). You can even eat most Lay's potato chips. Here is a link to a very complete list of gluten-free "regular" processed foods that you can find in any supermarket:

http://homepage.mac.com/sholland/celiac/GFfoodlist.pdf

Before long, you'll feel so healthy and energetic, you won't consider going back to eating gluten anyway. By the way, there are some wonderful gluten-free breads out there now in the frozen-food section of supermarkets and health food stores, including Against the Grain baguettes (just like sourdough baguettes), Rudi's breads and baked goods, and Udi's breads and baked goods. Many restaurants now serve gluten-free pizzas, such as BJ's Grill, Uno's, Amici's, Mary's Pizza Shack, and California Pizza Kitchen. Depending on which state you live in, there are even more options. Also, many of us have found Tinkiyada rice pasta to be quite similar to wheat pasta, and crackers by Crunchmaster and Glutino are quite good.

My best piece of advice overall: NEVER eat food at potlucks or picnics!! Always bring your own.

Good luck!

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Hi Sara,

Welcome to the group! The reason you can't eat little bits of gluten after a while is that celiac is an autoimmune disease. Your body makes antibodies to itself when exposed to gluten. If you think about germ caused diseases, like mumps or measles or whatnot, once you have them that's it. Your body then knows how to make those antibodies and you never catch those diseases again. It's not that you are not exposed to them ever again, but when you are exposed your body cranks out antibodies to destroy those germs. It doesn't matter if it was a year later or 20 years later, your body doesn't forget how to make those antibodies. Same with gluten, once your body learns to make those anti-bodies, it will always turn them on when exposed to gluten. And that will cause damage to your body.

Otherwise though celiac is all a lot of fun! :D Once you get used to eating gluten-free it is not bad at all.

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Welcome! You've already received excellent responses - you must stay gluten-free for life! Your family and friends are learning right along side you so their views may change over time. I haven't had to explain our need to eat gluten-free for well over a year, but I do remember feeling like it was the only thing I was talking about for the months following diagnosis.

The great news is this will get easier - make sure you ask all your questions here - as you can see there are many wonderful people on this board that will answer all your questions.

Hang in there!

PS Are you in a dorm or apt at school?

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I am a Fitness Therapist and Personal Trainer, recently I found out I have this disease after 20 years. I felt like evryone thought i was nuts. I use an ipohone application, Gluten wheat free that helps soooo much when im at the grocery store, and there is also an application I us for, Gluten wheat free , eating out. I just simply pull up the food, or the other application I use is Glutne free eating out. I hope this helps, If you have or need mre info, just type. I have learned the hard way with weight loss of 180 pounds, down to 118 pounds, but finally getting it together, God Bless!

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