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chrissy

New ---i Didn't Realize My Daughter Was Sick

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hi all, i am totally new at this--- i didn't realize my daughter, tianna, was sick-----she has probably been sick for over 2 years. she is painfully thin, covered in rashes, and doesn't smile very often. she is an identical twin, and has always been quiter than her sister. in the last couple of years her sister, kassie, has grown considerably more than her. i had read about dermatitis herpetiformis and realized that her rashes were suspicious. i took her to an allergist and pointed out the location of her rashes---he ran a celiac screen and it came out positive. she had a biopsy done 2 days ago---we expect to hear the final results on monday. my other twin has really bad reflux, just had esophageal thrush confirmed by biopsies(which did not show celiac, but they weren't looking for it either)and she has been sick for over 2 months. tianna's blood test was positive for the endomysial antibodies---i have heard that these are specific for celiac, but i have also heard that a few other autoimmune diseases could cause these. is there ANY chance that my daughter might NOT have celiac? i've pretty much resigned myself to the fact that this is going to be a new road in our lives and i am trying to look at it as an adventure instead of a problem---but i do have to admit that when i went to buy some gluten free cookbooks, i got a little choked-up.

christine

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Hi!

If your daughter had dh, then she definitley has Celiac. DH is specific to Celiacs. You should probably get your other twin tested too, since she has a 70% chance of having it if her twin does.

I was diagnosed when I was two years old, and it's not as hard as it seems. You'll get used to it! Other people on this forum will help you with that stuff, I'm not really good at explaining the food-ish part.

:D

-Jackie

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hi all, i am totally new at this--- i didn't realize my daughter, tianna, was sick-----she has probably been sick for over 2 years. she is painfully thin, covered in rashes, and doesn't smile very often. she is an identical twin, and has always been quiter than her sister. in the last couple of years her sister, kassie, has grown considerably more than her. i had read about dermatitis herpetiformis and realized that her rashes were suspicious. i took her to an allergist and pointed out the location of her rashes---he ran a celiac screen and it came out positive. she had a biopsy done 2 days ago---we expect to hear the final results on monday. my other twin has really bad reflux, just had esophageal thrush confirmed by biopsies(which did not show celiac, but they weren't looking for it either)and she has been sick for over 2 months. tianna's blood test was positive for the endomysial antibodies---i have heard that these are specific for celiac, but i have also heard that a few other autoimmune diseases could cause these. is there ANY chance that my daughter might NOT have celiac? i've pretty much resigned myself to the fact that this is going to be a new road in our lives and i am trying to look at it as an adventure instead of a problem---but i do have to admit that when i went to buy some gluten free cookbooks, i got a little choked-up.

christine

How old are your girls? On the whole the treatment for celiac will become second nature and just a fact of life for you and the girls. The rewards of seeing your girls healthy and smiling will make it all worth the effort. There are a whole lot more good substitutes out there than when I started my gluten-free life. Ask any questions you have; there is a lot of experience here.

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How old are your girls?

my twins are 14 1/2 years old and in the 9th grade. i have 8 children still at home-----my 10 year old daughter, molly, is also very thin and has alot of rashes. i have a friend that has celiac, so i have been familiar with the disease---she has actually been trying to talk me into getting myself tested, long before we suspected tianna might have it. i have fibromyalgia and i live on pain killers-----autoimmune diseases run in my family. my grandfather had MS, my brother is diabetic, my sister has PSC and needs a new liver, and my niece has just been diagnoses with sjogren's syndrome. i suspect that tianna might also have sjogren's syndrome because she has had dry eyes for a number of years. the eye doctor said this is pretty unusual for someone her age and he thinks i should mention it to her ped gi.

christine

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Actually, reading your other post, I'd suggest getting your whole family tested. celiac disease is genetic, and it sounds like you could have it too. All the symptoms sound like Celiac. Many doctors don't diagnose Celiac because:

a) They don't know what it is;

B) Celiac symptoms mimic TONS of other things such as IBS, lactose intolerance, chronic fatigue and all those things... just a whole bunch of stuff.

c) It can't be cured by meds.

And probably a lot more reasons.

Don't worry - we can help you. On this forum we have hundred of years of combined experience :D (probably- well, at least a hundred lol). At least I have twelve all by myself. Hahaha.

:D

-Jackie

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Guest nini

I would suggest that you read the book "Dangerous Grains" and then get your entire family tested. REGARDLESS of the results I would recommend trying your whole family on a "naturally" gluten free diet, I can help you with menu ideas and snack ideas that are quite normal and your family hopefully wouldn't miss any gluten foods... A naturally gluten free diet is very healthy and not that expensive. Where it gets pricey is if you buy a lot of gluten free substitute products like gluten-free breads, pastas, cookies, pretzels and mixes... I only buy those kinds of things occassionally and as a treat rather than making it the staple of our diet.

If you can get your entire family to be gluten free (at least at home) it would be easier on those of you that might have to be gluten free all the time.

The blood test is very specific for celiac so I would say that regardless of what the biopsy says, she def. has it. And she had to get it from someone and you are a likely source. I have not heard of the blood tests being used to dx anything other than celiac. But I am not a Dr. Just a mom with a celiac child and I have celiac myself...

Feel free to PM me or e-mail me if you want menu suggestions that are naturally gluten free. I'm sure there are a ton of other people on here that would be willing to do the same too.

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Guest nini

e-mail me at nisla@comcast.net and I'll send you some ideas... I had a long post typed up here and my computer LOST it... grrrr...

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Hey Christine!! I found you!

We can be overwhelmed together. I promise, when I started this journey just a short month ago, i was in tears at the thought. It was "anythi :D ng but celiac, please" now, I am not so upset. it is OK. it is managable, in our control. That is good, right? It is overwhelming. Especially when others say "but a little bit won't hurt" and look at you like you are nuts for refusing the small goodie offered. This place has such a warm and helpful spirit, you'll like it here ;)

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is there ANY chance that my daughter might NOT have celiac? i've pretty much resigned myself to the fact that this is going to be a new road in our lives and i am trying to look at it as an adventure instead of a problem---but i do have to admit that when i went to buy some gluten free cookbooks, i got a little choked-up.

christine

There is always a chance that it might not be Celiac's, but the thing is, out of all the disorders it could then be....Celiac's would be the one to hope for as it at least offers you some control and normalcy in life. There are no meds to deal with, no constant measuring of levels and medical scans.....the diet can be overwhelming at first, but it IS totally within your control and will be whatever you make of it.

I think that your attitude of looking at this as an adventure is really the right way to go about it. But it takes a few months to convince the heart that this is the "gameplan" :) I know that you're probably thinking of all of the things your daughters may miss out on like birthday parties and pizza with friends....but really, it won't be all that bad. Your daughter(s) will grow up thinking that this is normal. And you have to understand that they will associate their own memories and values to food.

To me, the psychological aspects of going gluten-free were much tougher than changing my recipes. All that I can do is try to encourage you to find positive ways to work through the dietary changes and stay focused on all that you CAN have as opposed to what you can't. I think that it's almost taken me a full year to REALLY feel like this is an adventure and to find comfort in the new cooking routines that I have. It is nearly shocking to me that I have routines!!! lol! But it does get there.

You will find ways to make your dd's life more "normal" (in that the foods she has will resemble what her non-celiac friends are eating). Just take it a day at a time and find ways to make food a time for family and joy.

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I would add my voice to those whom say it gets easier. It really does. Having to stay away from gluten is not such a horrable prospect. Anymore than staying away from cats if you are allergic to them, or not eating peach pits because they contain arsenic. It probably seems difficult now because we live in a wheat-filled world, and everyone seems bent on consuming such massive amounts of the stuff. Consider what foods people eat every day at every meal, and you will see wheat, wheat, wheat, and more wheat. That and red meats, though that's another issue.

As for gluten-free food ideas, you will find that rice and potatoes are good friends in the kitchen. Try not to overlook sources of fiber, so brown rice instead of white is a good idea whenever you can use it. There are a number of other good grains too, like millet, quinoa, amaranth, etc. Dark green leafy veggies like spinach, brussel sprouts, broccoli, etc are good also. Apples and many other fruits can be a valuable addition to your menu. If this just sounds like a good balanced diet and common sense, that's because it is! A wheat based diet is not so healthy or logical once you think about it.

Anyway, I would not be a bit surprized if the other members of your family (which you mentioned as having various diseases and health issues) all have an intolerance for gluten. As has been stated, celiac disease is often misunderstood, and misdiagnosed as other things. So many diseases we hear about have no recognized cause, but the damage done by Celiac disease leads to quite a number of them.

I'm sure you'll find this site and the members of this forum to be quite helpful. I know I have. Be sure to browse the articles and FAQ's. You'll get more there than from most doctors. I believe your family is about to find out what being healthy can feel like. Let the healing begin!

Edited by RiceGuy

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