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In Search Of Help.
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Hey guys,

I'm pretty new to this whole thing. I'm 15 years old and yesterday was the first day of my sophomore year or highschool. A week ago yesterday I had a stomach scope done. For the last 8 months I have been struggling with intense stomach problems. I had the hida scan, an ultra sound, blood tests for various types of ulcer related problems. However, they never tested me for a gluten allergy. When the surgeon had discovered my inflamed small intestine he decided to take a sample of my tissue. He told us there was a slight chance I had a gluten allergy, but it was very low. That is was probably caused by stress. Yesterday, I recieved a call confirming I had celiac disease, only half way through my first day of school. I truly believed that that wasn't going to be the problem, so it took me back quite a bit upon learning that it was. Now I'm struggling knowing that this is a life time problem. It's honestly depressing to know. I'm also struggling with finding gluten free foods. I live in a small town (no walmart) so it's been hard. I really could just use some advice and maybe some easy foods to eat without gluten? Please, I'm feeling really lost seemings as nobody I know has this problem...

Thanks!

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I promise it gets easier. I had a surprise diagnosis too and didn't take it particularly well, but threw myself into everything gluten free because what choice did I have? Before I realized it, everything was second nature to me.

 

All I can really think of is to read the newbie thread at the top of the coping section. That will help you get a good grasp on getting started. If your shopping options are really limited you'll be stuck doing whole foods. Its really healthy anyway, but that doesn't make it any less sucky in the beginning to be giving up foods you love. As time passes you'll take on new challenges like baking and such (you can order flours online) and you won't feel the least bit deprived. Check out the local store's health food section if they have one, lots of places mix in the gluten free stuff with that area. Or some just have it on the shelf with everything else and you have to kind of do a scavenger hunt for it if you want something specific. Lots of people suggest giving up milk (temporarily until you begin to heal), but frankly unless you have an obvious problem with it I think its just silly to deprive yourself of one more thing at an already difficult time.

 

You may want to have your parents set up a 504 plan for you for school. This is just a thing that will lets the school be aware of the problem and how to accommodate you. Things like making sure you can always use a bathroom immediately if you need to go. (Stealing this from another thread...) Being able to carry a water bottle because lets face it, people put their gross gluteny mouths right on the water fountains like pigs so you can't use them. Whatever you specifically need, the plan can be set up to cover. Every 504 is individualized to the student. You may need to get out of cooking classes or have them modified if the teacher is up for that. Sometimes teachers have treats (apparently even in high school :blink:) and such, and maybe you need to be able to keep something with you so you aren't left out. Just lots of little things that will keep you this side of normal.

 

Anywho... welcome. I'm sure you'll find lots of good advice if you poke around. And if it makes you feel better, you can still eat all the bacon you want. :D

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Carmello,

It will be hard, but just know it does get better. When I first went gluten-free, I lived on rotisserie chicken, brown rice or baked potato and veges. My local store has some gluten-free foods in the frozen food section or health food section. You just need to get really good at watching labels. I can usually easily find different kinds of gluten-free pasta and meats are ok (except be sure to check processed meats).There are cereals and frozen waffles that are good gluten-free choices.

I agree that you should let the administration at school know about your diagnosis and push for a 504 plan. You could try taking rollups of gluten-free lunch meat and cheese to school. There are lots of nuts and chips that are ok and many types of candy are as well.

Definitely check out the newbie thread. Educate yourself as well as you can.

Thought I'd pass along a link to one of my favorite little treats when I get the craving for some "normal" food: Gluten free donut holes. I bake them, not fry. http://afewshortcuts.com/2013/05/delightfully-glazed-gluten-free-doughnut-holes/#_pg_pin=563455

Keep in touch and let us know how you're doing.

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Hugs to you. It does get easier as you figure out what you can and can't eat. The newbie thread really is very good and any of the threads about dinner or lunches will help too....and give you some ideas for when you're feeling ambitious and what to try something new.

Good luck! Feel free to ask questions, we're here and we all have varying levels of knowledge or things that worked well for us.

 

I would suggest....not eating or attempting to eat any gluten free bread right now....although, my 15 year old son actually liked it right off the bat so who knows. :) There is a blog called Gluten Away.com run by a 16 year old with an adrenal disorder and Celiac disease. He has lots of really simple recipes on his site. I would definitely go check that site out as well. I know it can help to talk to someone your own age. :)

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If you want donuts that are better than gluten donuts, as my gluten eating husband will tell anyone, try these. I make donut holes because it seems pointless and stupid to waste time and energy making them into round donuts. It makes like a bazillion, and you can freeze the ready to fry dough for later. Also, you won't have to find pancake mix since you're worried about that. You can just get them shipped right to you. http://glutenfreeheaven.com/

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Hi Carmello,

 

Welcome to the forum! :)  The good thing about starting young on the gluten-free diet is that you will have a lifetime of healthy eating.  After you get used to eating gluten-free it is not a big deal at all.  You can bring snacks with you in  a backpack or something when you go out, so you don't have to worry about not having something safe to eat.  Things like fruits, or Lara bars or nuts are easy to carry around.  Mission brand corn tortillas and chips are good.  If you get the soft corn tortillas you can make mini-wraps with them.  They are much cheaper than gluten-free bread.

 

But mostly you want to stick with whole foods instead of processed foods.  Whole foods are foods in their natural state, like apples, bananas, chicken or beef etc.  Pizza, unfortunately , is not a whole food.  It is made of several different foods all put together in a pizza factory somewhere.  There are gluten-free pizza's available these days though.  Just don't make processed foods a big part of your diet.  It is really helpful to learn to cook when you have celiac disease.  There is often a celiac support group in the area that can help with local information.  And many restraunts do offer gluten-free options these days.  Some will let you take you own food in to eat.  But it is good to check ahead of time on that.

 

Helpful threads:

FAQ Celiac com
http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

Dessert thread
http://www.celiac.com/gluten-free/topic/93840-whats-for-dessert-tonight/page__pid__802399#entry802399

Easy yummy bread in minutes
http://www.celiac.com/gluten-free/topic/56641-easy-yummy-bread-in-minutes/
 

Super Easy Meal Ideas Anyone?
http://www.celiac.com/gluten-free/topic/97027-super-easy-meal-ideas-anyone/
 

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You now know the source of your problems and you can fix them.  There are all sorts of foods that you are probably already eating that don't contain gluten.  Potatoes, rice, meat, vegetables, fruit, eggs and lots more.  No problem.  You may need to start doing some cooking, but that can be really rewarding and fun.  My son is 16 and cooks our meals these days.  He does a great job too.  There are so many great things to this life.  It can seem hard at first, but once you get used to the idea, not eating gluten is no big deal.

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
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