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Found This On Another Message Board


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#16 Jessica36

 
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Posted 10 February 2005 - 07:32 AM

Thanks everyone, that is EXACTLY what I was trying to get across. Trust me I know how Celiac's sucks, I have a good friend with a 5 yo old who has it. Has both the positive genes, but the GI wants him back on Gluten to do the scope, so basically wants him in pain for months. She was like No thanks. I totally agreed with her.

You guys aren't that bad! ;) I look forward to learning more from you all as I have a feeling we will be going full force Gluten free for ds#2 and may start it for ds#1 to see if it helps subdue some of his ADHD.

Thanks Again!
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#17 hsingmama

 
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Posted 10 February 2005 - 10:00 AM

Hi everyone--

I was not planning on posting here, not planning on joining, but I appreciate the shift in spirit of the last few posts on this thread. Please, read my entire post before making any more assumptions about me.

I'm the extraordinarily "ignorant" mom from the other board. If you all had had the courtesy of reading my posts a little more carefully, you would realize that I never said celiac disease was not serious. I never belittled or minimized the impact. And, I never said the OP should not consider celiac.

My concern was that there were way too many misconceptions about allergies being presented on an allergy board. My son has a combination of both IgE-mediated allergies and non-IgE-mediated allergies. He has an anaphylactic reaction on contact to dairy. In other words, he could die if he touched a smear of dairy or if someone touched him after eating ice cream or kissed him after eating cheese or yogurt. He is severely allergic to latex and is considered ana to several other foods.

That's ONE type of allergy.

His other allergies affect his gastro-intestinal tract. One bite of the wrong waffle left him in s0 much pain that he couldn't eat for a week. He lost 2 pounds--and he was already FTT. Five weeks later, we could still see the damage in his tummy on the endoscopy. Apples have the same impact, as do certain beans and other fruits and veggies. Those are the ones we *know* about. He's been scoped several times and we've all had the genetic testing for celiac (not the simple blood panel--although he's had that, too). All negative. The genetic testing, performed by one lab in the US, is considered 99% accurate. We are dealing with a gluten allergy--but the impact on our life is the same. One bite leaves him miserable and tears up his gut. Jessica already mentioned EE--that's our probable future, as we trial more food.

Right now, we (he's still nursing at age 2.5) strictly avoid his known allergens. Ready for this?? Dairy, soy, egg, corn, peanut, treenut, wheat, bananas and avocados and latex, mustard, sesame, coconut, barley, buckwheat, quinoa, and most fruit and veggies and many other legumes.

You wanted me to live one day like we have celiac disease? We already do that. Try living one day on our diet. Try going to the store and reading the labels for corn. Our meds. have to be compounded b/c most of the standard 'scripts contain some form of corn and soy.

It isn't a contest. I want my child to be safe and healthy. You want your child to be safe and healthy.

As someone said, we need to listen to each other and work as a community. We have something to offer each other. I wish you had read my posts and seen that I didn't downplay celiac. I simply want others to understand that allergies can, in fact, have the same impact, follow the same symptoms, be just as dangerous in the long term.

Not everybody outgrows their allergies. Most kids with severe multiple food allergies carry the worst ones to adulthood and, as Jessica said, EE is a lifelong condition.

Peace.

Missy
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#18 Twister2

 
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Posted 10 February 2005 - 03:48 PM

I did NOT in any way say that children ALWAYS outgrow allergies. Nor did I call you ignorant. Please read my post again. what I DID say was that SOME children outgrow allergies. I am very aware that many do not. My husband had horrible reactions to peanuts and all root vegetables as a child and was in ICU for weeks at a time with severe gastro-intestinal swelling. And yes..he did out grow them. I in no way meant to be insensitive to children with allergic conditions. I see no point in arguing who "has it worse" in this case. There is no need to be so defensive!!!!
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Antibody positive, diagnosed October 2004.
Mother and two sisters with Celiacs also
Edmond, Oklahoma

#19 hsingmama

 
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Posted 10 February 2005 - 04:16 PM

Oh, good heavenly beans!!! I'm being defensive?

I give up.
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#20 celiac3270

 
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Posted 10 February 2005 - 04:27 PM

Having read your post, I would like to, once again, apologize. I got really angry and defensive about this, but it is now obvious that your son's situation is much worse than our mere restrictions of wheat, rye, and barley. Your son is living on a gluten-free diet (with the exception of rye) and so much more. I think the hardest part about this diet for me is that my symptoms won't be shaken, despite my villi growing back and a solidly gluten-free diet for a year. This makes celiac seem so difficult to me, but it's not the diet--just the constant vomiting, pain, sickness that I've had since I can remember and still deal with. I've had a change of heart about this :), trying not to be as defensive, but visualize myself in the future as a healthy celiac--then celiac is simply a dietary nuisance.

Debmidge is right--there isn't enough....comradery between those with allergies and those with celiac. If we work together, trying to get these "allergens" listed on labels, it'll benefit everyone.

Sorry again--I jumped to conclusions and got heated up over something that I shouldn't have.
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#21 mommida

 
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Posted 10 February 2005 - 05:12 PM

I was interrupted from posting. My child was sick, and you know you gotta get that kinda stuff cleaned up a.s.a.p
Deb midge posted pretty much what I wanted to add all ready.

Both groups would be better off if we shared resources, and combined our efforts. Food label laws, social accpetance through education, and more knowledgable medical professionals are issures we deal with on a daily basis. It is very frustrating. Explaining the same thing over and over again, and you think someone who has something so similar might just "get it", but they don't. We need to listen too, the way we want to be listened to. The more people who ask for gluten free food helps. Restaurants will offer a detailed menu, maybe even take cross contamination seriously.

Laura
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Michigan

#22 Twister2

 
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Posted 10 February 2005 - 05:58 PM

It is quite understandable that people get "defensive" (dare I use the term in this thread) that ANYONE Allergic and Celiac alike, are sensitive to their respective illnesses. There is no point is attempting to "justify" who is sicker. Its totally irrelevant. I think all anyone wants is people to respect their condition. I am very sympathetic to those with severe allergies. My sister aside from being Celiac is also intolerant of all dairy, corn and soy. You will find this to be very common of many Celiacs. I cannot tolerate Dairy either. It is so often not just about the wheat for Celiacs. I am not trying to feed into the argument here, I am just trying to pass on some information. :) Celiacs and Allergic conditions have alot more in common than you think.
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Antibody positive, diagnosed October 2004.
Mother and two sisters with Celiacs also
Edmond, Oklahoma

#23 cdford

 
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Posted 10 February 2005 - 11:25 PM

So many of us have both celiac disease and multiple allergies that we do understand. I carry vistaril and an epipen everywhere I go. When I get into any of the offending grains for celiac, my mouth swells and my throat closes. So does my daughter's. It is truly frightening to a waiter to watch you grabbing for the medications after the first few bites of a meal he/she just put on your table. We then get to go through the days/weeks of stomach yuck and the DH pus pockets and itching.

The "battle for worst" thing doesn't do any of us any good. It's all bad. It all effects our daily lives and our abilities to go into the public arena safely.

We all choose how we will handle it. Personally, I choose to be positive, carry my medicine with me, and live life as safely and joyfully as possible. No, I will never eat at another Olive Garden or in my case enjoy a Chic-fil-a (that is enough to bring tears to my eyes). But you know, there are far more important things for me to be concerned over.

Let's be encouraging, not discouraging. We know how common this thing is. We know what the long term damage can be. As a result, we try so hard to let others in on the "secret" that has changed our lives. Many of them will have the problems and choose never to get tested. How sad for them when this change in diet can prevent so many other heartaches.
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Donna
South Georgia
9 yrs gluten-free
...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...

After almost 10 years, I am doing soooo much better!

#24 stef_the_kicking_cuty

 
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Posted 11 February 2005 - 11:49 AM

I also think, that it's a good idea of working together for people with allergies and celiac. I already apologized on the other board. Well, i wanted to help and really don't want, that one of them ends up like the one woman with over 144 food allergies that mostly got healed after she got diagnosed with celiac (or was that on the german message board?).

But I also didn't find it quite fair, that she said, that she read this post, because she frequently is reading on our message board. It's not like I was making a secret out of this. After all I posted two different links. One to our board and the other one to this discussion, which got deleted afterwards, because it's not allowed to post that on their message board. I got an IM later which also stated that I should keep in mind that 'the goal of our board is for support to other mothers'. That's what I also thougth and that was why I actually referred to our message board. Because I thought it would be a good support. But my desire to help shrank immensely. I make this experience more and more, the more you try to help, the more you get kicked in the butt. I'm sick of this. And I didn't try to convince anybody, i just wrote down facts, that already happened. If they want to live with their pain, fine. I can surely live with it, for i'm fine again. But that's of course not the fault of you guys on this celiac board. I just need to rant. Sorry... You're always so supportive.

Hugs, Stef
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Stef

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Results for 2011:
1x PA State Champ (I defended my title in pointfighting) and also again Grand Champion in pointfighting
August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)
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Shermans Dale, PA

#25 Jessica36

 
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Posted 11 February 2005 - 12:13 PM

Stef ~ My comment was you called us ignorant when we tried to educate you on the misinformation you had received on allergies. That is all. And yep cross posting is the not allowed on MDC, it is in their board rules. Sorry about that.

We gave yo upraise for your great information and I really think you gave the mom a lot to think of, we just wanted all sides represented. Like everyone said, it is about all of working together not being defensive and belittling to each other. And I am sure that NO ONE wants to live with pain, which is why you offered the info on Celiac's originally. Glad you are feeling good.

Jess
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#26 stef_the_kicking_cuty

 
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Posted 11 February 2005 - 12:18 PM

Yes, I know and I already apologized. I just don't think it's a good idea anymore for me to hang out there. Maybe anybody else does it. I sure don't want to be a prick and if anybody askes me for help i sure won't say no. But on my own i'm not doing anything anymore. I'll stay on this message board here, where we know each other. I'm just sick of helping anywhere else. That's all...

Hugs, Stef
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Stef

Next goals:
Results for 2011:
1x PA State Champ (I defended my title in pointfighting) and also again Grand Champion in pointfighting
August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)
gluten-free since 07/21/2004
Shermans Dale, PA

#27 Jessica36

 
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Posted 11 February 2005 - 12:22 PM

No problem, but I may come bug you if people ask about Celiac ;) And I have been meaning to post this over here. It is an awesome way to help explain anything and everything about having our multiple issues.

http://www.butyoudon....com/spoons.htm

HUGS
~J~
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#28 stef_the_kicking_cuty

 
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Posted 11 February 2005 - 12:41 PM

That's nice. The spoon theory :lol: . That's a very good way to say it. Thanks for sharing.

Hugs, Stef
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Stef

Next goals:
Results for 2011:
1x PA State Champ (I defended my title in pointfighting) and also again Grand Champion in pointfighting
August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)
gluten-free since 07/21/2004
Shermans Dale, PA

#29 Twister2

 
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Posted 11 February 2005 - 06:13 PM

celiac3270, I just read in your signature that you are having surgery for malrotated intestines??? Best of luck and i'll keep you in my prayers. Let us know how you are doing post-surg ok?


Hugs,

Twister
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Antibody positive, diagnosed October 2004.
Mother and two sisters with Celiacs also
Edmond, Oklahoma

#30 celiac3270

 
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Posted 11 February 2005 - 06:37 PM

I will :). It'll be tough to leave, cause as you can probably tell, I live on this board! When I'm not doing homework or sleeping or eating, I'm on here posting--I'm going to go through withdrawl being away for a few days :lol:
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