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What Are Yoyr Symptoms?
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I'm a 15 yr. old recently diagnosed celiac. I've been trying my best to stick with the diet lately, but it's hard since I'm still finding out about wether things have gluten and gluten contamination, ect. I seem to be REALLY sensitive to it. I was just wondering, what were your symptoms before going gluten-free? I seem to have alot of odd symptoms like racing heartbeat, nausea, diarrhea, panicky/irratable, fatigue, ect. I almost feel like I have the flu after ingesting gluten. It's so nice to be able to talk to other celiacs because sometimes you feel so alone with it.

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Hi,

First, welcome to the board. Second, your symptoms are not abnormal at all. There is such a wide variety of symptoms for Celiacs so no symptoms are "abnormal" in any way. Actually, you have some of the common ones. Common symptoms include cramping, vomiting, diarrhea, bloating, weight loss, fatigue, and weakness. You have the diarrhea, fatigue, nausea (similar to vomiting symptom)...so don't think your symptoms are odd :) ; they're not. Since you asked, my symptoms included cramping/vomiting as the hardest on me, then occasional diarrhea, constant gas/bloating/distended stomach, and then, not loss of weight, but minimal weight gain over the years (which, being a growing kid, I should've gained.....since starting the diet I've gained nearly 15 pounds!...and I'm thrilled!). I didn't have one very common symptom, fatigue...as a matter of fact, I'm really energized...I naturally wake up between 6 and 7:30 every morning without an alarm clock, go to bed between 10 and 11:30....no energy loss here. As for weakness, I weighed a lot less, so, understandably, I could be pushed around easier in contact sports, but considering my weight, I wasn't a weak person.

Before getting onto the food part, there's your other symptom: panicky/irratable. That, too, is common. In fact, there's another post in the teenagers only section about "how celiac disease affects emotions" and irritability is the most common thing under there. Many of us on the board, including myself, get irritable. In addition, I get anxious whenever I feel a twinge in my stomach (cause cramping/vomiting is my major symptom). Whenever I am sick, say, during the school year, I'm anxious about what I'm missing in school and when I'm not sick (before I was diagnosed) I worried about why I was getting sick all the time and when my symptoms would next return.

I'm not really sure how far along you are, but if you've been led, thus far, to believe that gluten is only in rye, barley, wheat, malt, and debatably oats, then....you don't have the full scoop. For a complete list of forbidden ingredients, go to the site index at Celiac.com, then the sixth thing down (forbidden/safe ingredients), and then get the forbidden list...it's complete and a helpful reference. They also have some lists of safe foods. In the beginning, it's kind of tricky getting used to all the ingredients; I'd be in a store and forget what ingredients were bad or, my first issue, I was confused because a box of pancakes labeled GLUTEN-FREE said "Buckwheat Pancakes" -- this triggered my "no wheat" instinct -- turns out that buckwheat is gluten-free....this stuff can get confusing.

To avoid contamination: get a new toaster oven for ONLY GLUTEN-FREE products. Get a new pot and some cooking utensils for, again, only gluten-free foods. Anything plastic is harder to get completely clean, so if you have any plastic strainers or measuring cups, keep them for the rest of your family, but get new ones, preferably glass for the measuring cup, and some sort of steel for the strainer (these materials are easiest to wash clean if someone uses your stuff by mistake) to avoid contamination. Other than that, it's the simple things. Don't use the same thing to stir gluten-free noodles and non-gluten-free noodles. Don't dish up the gluten-free and non-gluten-free foods with the same utensil....that kind of stuff. You'll become a natural at it quickly, but in the beginning you really have to think. And, if you have any doubt about anything...don't eat it. The symptoms and effects on your intestines are not worth enduring for the five minute pleasure of a favorite snack....be careful.

I think I've posted this list about 10 times....but in case you haven't seen it, I'll post it once again. I compiled a list of good gluten-free products....after all, 75-85% of the gluten-free products taste awful....then there are the 15-25% that taste good or excellent. The key is finding those products with a minimal amount of trial and error :)...so it's easiest to get ideas from others who have already tried, errored, and found:

- Store-bought Cookies: try Pamela's Products -- the BEST cookies. The lemon shortbread are decent, but some people find them too strong a lemony taste. However, try the Dark Chocolate Chocolate Chunk Cookies. They are AMAZING!!! Even including regular cookies, they are the best store-bought I've ever had.

- Homemade Cookies: if you have 15 minutes to spare, make peanut butter cookies. Very good...even my aunt who hates PB liked them. Preparation time is about five minutes and the recipe calls for 10 min. baking -- it might take 15. All you need is 2 cups of PB (Skippy or Jif), 2 cups of sugar, and 1 egg (this is also good because there aren't any weird gluten-free flours and stuff...where do you buy those things, anyway? I don't like to cook, and I surely don't like to cook something that requires six different types of flour...it's ridiculous and I like simplicity if I am even going to bother cooking something...I don't mind making basic things, but now 6-flour-cookies that take three hours to make and three minutes to eat... ).

- Fruits/Vegetables/Meat: I eat so much more fruit now...apples, bannanas, strawberries, blueberries, canned mandarine oranges, canned peaches, etc. There are, of course, meats: chicken, steak, pork, hamburgers, etc....no fresh meat is excluded...but I often forget about fish, which are, too, gluten-free.

- Bread: People will say Knikinick or however it's spelled is great, but I've found Ener-G to be a bread that tastes astoundingly similar to regular gluten-filled white bread...that's what I use...you make your pick...go with me or the majority!

- Pizza: probably thought you'd never have that again, right? Get Chebe (you can only get it online), but buy the bread mix, not the pizza crust (the bread mix turns out better). Follow the instructions, mush it out into a round "thing", bake as instructed, and then add sauce (Classico is good and the only kind that I know to be gluten-free....but expensive), and gluten-free cheese. It's terriffic. By the way, you can get the Chebe at http://www.chebe.com. Try it...the shipping is free and once you realize that you like it, you can buy it in bulk and get discounts. Please!!!! If you take ANY OF MY ADVICE FROM THIS POST....TRY THE CHEBE!!! It's worth your time.

- Miscellaneous: Raisins, Quaker Rice Cakes, most soft drinks are gluten-free including all kinds (diet, caffeine free, etc.) of Coke, Sprite, Sunkist, Pepsi, etc. As long as you stick with the brand-name companies (not the Supermarket Colas and be careful with Root Beers). There are many gluten-free candies...I actually made a post under the "Teenagers Only Section" for gluten-free candies...check there for the complete list that Gf4Life (Mariann) provided...actually, I'll copy it below:

Hi celiac3270,

I have a list of mainstream gluten-free and milk free candies that I use when shopping for candy for my kids. I got it from the Gluten-free Casein-free Diet Support Group for Autistic kids and they are very strick when it comes to putting products in their booklet each year. I know that Dextrin is one of their ingredients that is avoided, so these should be safe. Still read all the labels, since manufacturers change their formulas far too often:

Nestle: Sweet Tarts, Spree Chewy Candy, Regular Spree Candy

Farley gummy bears

Willy Wonka: Gobstoppers, Bottle Caps, Pixy Stix, Nerds, Runts

Mike & Ike: Zours, Jelly Beans, Hot Tamales

Starburst Fruit Chews (NOT Starburst fruit twists!)

Necco: Necco Wafers, Sweethearts, Conversation hearts (Valentines), Necco Candy Eggs (Easter), Candy Stix, Talking Pumpkins (Halloween), Peach Blossoms (Christmas), Necco Ultramints, Canada Mint & Wintergreen Losenges

Rock Candy (made from pure sugar)

Ce De Candies: Kidz Rings, Candy Fruits, Candy Lipsticks, Smarties

Mars Inc: Skittles, Jelly Beans

Sunkist: Fruit Jems, Jelly Beans, Orange and Cream chews, Super Sour Stars

Sorbee International: Lollypops

Jolly Rancher: Hard Candies, Jelly Beans

Jelly Belly: All flavors of Jelly Beans EXCEPT: Cafe Latte, Buttered Toast, Caramel Corn, Buttered Popcorn, Chocolate Cherry Cake, Chocolate Pudding, Strawberry Cheesecake

This should give you a lot more options and they are all available pretty much everywhere. I can also put together a list of others that you might only find online or in healthfood stores if you would like. Just let me know.

As for chocolate, I found that the Scharfen Berger chocolate bars are very yummy. They are gluten and dairy free by ingredients. The small bars are wrapped in a different facility where they also wrap other chocolates that do contain milk, so as a precaution they put a milk warning on the label. I am very sensitive to dairy reactions and have never had a reaction to these bars. They are a bit pricey and not available everywhere (I got mine at Whole Foods) but they are very nice to have when you are craving chocolate. There are also a few kinds of baking chocolate chips that are gluten and dairy free.

God bless,

Mariann

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Thanks SO much, celiac3270! Your post was extremely helpful! I'm in that stage where I really have to be aware and read every single label. I feel much less unusual about my symptoms, too! Thanks again! I'm so happy I found this board. It's a lifesaver!

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    • 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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