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Member Since 27 Dec 2010
Offline Last Active Feb 04 2012 07:38 PM

Posts I've Made

In Topic: Intussusception In 12 Year Old Daughter

21 January 2012 - 01:11 PM

I'm so sorry your caught was so ill, I hope that is the last time she ever has to experience something like that. If I were you, I would consider her Celiac for all intents and purposes; don't worry about testing, as you know she gets sick when she cheats and (I'm assuming, from what you said) is healthy when she does not.

Really, the cheating needs to stop. I'm presuming that since she was getting away with it even though you knew it was happening, you probably did not realize, just as she did not, that severe damage was being done. It sounds like maybe you should sit down with her and have a serious talk about gluten: no cheating, never, ever. She's risking even more serious problems than she had already endured. My guess is that the mom who saw her eat the pizza assumed that your daughter knew how to manage her own diet properly (I'm not blaming your daughter, it sounds like the two of you really just didn't know how bad it was for her to cheat). The mom probably thought she could have some gluten now and then; a lot of people don't understand the gluten-free diet properly.

Do her doctors think that the intussusception was due to gluten exposure? I would just want to make sure it wasn't caused by an additional problem that requires treatment. (I don't know anything about it).

In Topic: Am I Celiac? Negative Blood Test

04 January 2012 - 06:31 PM

It's totally possible that you have celiac anyway (my blood test was negative, too). You could push for a biopsy to double check, or you could just go gluten-free and see if it helps. Many of your symptoms do sound like classic celiac.

You do have a few symptoms, though, that aren't what I would typically associate with celiac. Celiac can certainly cause problems with intercourse and with your bladder, but those combined with your amenorrhea make me want to tell you to keep pushing your doctor to rule out any other causes of those specific symptoms. You do sound like a celiac, and if you go gluten-free and those symptoms disappear then that's great, but those sound like a few things I would want to keep an eye on.

In my opinion, IBS is a cop-out diagnosis. "We can't figure out what's wrong with you, so we're just going to tell you that your bowels are irritable." I'm surprised with your mouth ulcers and mucous membranes, etc. your doctor hasn't wanted to do a biopsy or hasn't thought about any other causes of those. Ulcers, tonsil stones, joint pain and headaches are not IBS symptoms.

In Topic: Need To Vent Because Mom Is Not Helping

04 January 2012 - 06:19 PM

You've had some great advice so far. I'll add to it with my own experiences.

You would be surprised how many people really don't have the faintest clue what's in the food their eating. Many people don't know what gluten is, and that's understandable. But I've had experiences with people who thought that I could eat white bread. "Oh right, you can't have wheat bread. But white bread is fine, right?" (Uh, no. It's still wheat. What did you think it was made of?). People will continue to surprise you.

I live with my partner's family, and I have since before I was diagnosed, which was over a year ago. His father, bless his heart, STILL doesn't understand what I can and can't eat. He doesn't prepare any food I would eat anyway and he's good about keeping things clean and separate so I don't worry about him glutening me, but just this morning he came home with a big bag of soft pretzels and offered me one. I just gave him "the look" (a playful one) and he said "Oh wait! You can't eat this, can you? I'm sorry, I always forget what has gluten in it." He not only forgets what has gluten in it, he also forgets what has flour in it, what flour is made of, etc. If your mom is anything like him, you may just have to learn to laugh and live with it. YOU know what you can eat, so you'll just have to be vigilant in making sure she doesn't accidentally gluten you, and keep gently reminding her what you can't eat.

I know this doesn't make it any easier...but at least she cares and tries. My own mother says things like "A little bit won't hurt you, right? Just eat the cupcake and move on with your life." When I refuse, she rolls her eyes and says "God, what a boring existence..." I don't know what it is about gluten intolerance that people can't seem to take it seriously.

I know you gave her a book, but honestly, if it wasn't my own problem, I don't know that I'd be interested in reading a whole book about gluten intolerance and everything that goes along with it. If it was my young child, I would, but it sounds like you're old enough that she knows you can be responsible for your own food. That's probably why she hasn't bothered to read it. I know it's hard when you're fairly new to gluten-free and someone keeps offering you food that you REALLY want to eat but know you can't. Believe me...I know it. But she loves you and she's trying, it's just complicated for some people. If it helps at all to know, it does eventually get easier to be around foods you used to eat. The other day, when I made a new pizza crust recipe and my partner asked me if it tasted "like a real pizza crust," I realized that I don't even remember what regular pizza crust tastes like. Mine tasted really good! You'll develop new tastes for the foods that you can eat. It gets easier, I promise. :)

In Topic: Gluten Free In College

28 December 2011 - 03:05 PM

Do you live on campus and/or rely on the school dining hall as your primary source of food? If so, you'll want to speak with someone of authority about food that is or can be made safe for your to eat. I had a lot of trouble with this and eventually moved off campus because I had a VERY limited selection of safe food, and what was "safe" sometimes made me sick anyway.

My school had a small cabinet and freezer with gluten-free bread, waffles and muffins, and some cereals and occasionally cookies. While I was grateful for the effort, they 1) had no idea how to choose GOOD bread, cereal, etc., 2) didn't understand that I couldn't use the gluteny toaster, sandwich press, and other things, and 3) rarely kept the thing stocked past the first few weeks of the semester anyway, which was frustrating.

Find out what kind of accommodations your school can make for a student with special dietary needs.

Here are things I had to consider:
-Even when I could get gluten-free bread, I couldn't have sandwiches made at the sandwich counter because there was absolutely no way to prevent contamination with the gloves, countertops, toppings, press, and everything. So if I wanted a sandwich, I had to make it from the salad bar and just thaw the bread in the microwave (ew).
-My school's dining service was completely awful at accurately labeling the food with ingredients. Half the time the labels never got put up, and half the time that they were, they were not the correct dish or the ingredients weren't complete.
-I couldn't have toast for breakfast because of the toaster situation.
-I always ran the risk of being contaminated by a serving spoon or something similar that hadn't been switched out.
-Certain things like french fries were not safe because they were fried in the same oil as breaded chicken and things like that.
-Even gluten-free cereal (like Chex) were not safe because I didn't know what other cereal had been in the dispenser before.
-The dining staff may or may not have any clue about keeping you safe. Mine didn't...hence the fact that I ended up moving off campus.
-You're going to have to become best friends with the floor manager(s). They will be able to tell you what the ingredients of something are and how it's made so you can determine if they're safe. I had one manager who was awesome, but they just weren't able to feed me.

Good luck.

In Topic: Newly Diagnosed Celiac - Vegetarian

27 December 2011 - 02:47 PM

First of all, welcome! I know how good it feels to have figured out how to help yourself get better, and to begin the journey. I'm also vegetarian and I'll tell you that veggie-gluten-free isn't very hard, especially if you've been veggie for awhile and are used to that.

I cannot recommend this blog enough: www.glutenfreegoddess.blogspot.com.

Her recipes are fantastic, and she's also vegetarian with several other food allergies and intolerances, so her recipes always have suggestions for substitutions.

There's a link at the top of her blog to extra help on going gluten-free for new celiacs (http://glutenfreegod...-go-g-free.html). It's got a lot of excellent tips and recommendations when you feel a bit overwhelmed by all the can't-haves.

Also, make sure that if you're sharing a kitchen with gluten-eaters, don't use their wooden spoons, cutting boards, or old/scratched pots and pans or skillets. You'll also need your own toaster and certain condiments that can be contaminated by gluten (butter, peanut butter, jam, etc.). Make sure you have a safe space for your food and keep the kitchen very clean to avoid contamination.

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