Found This On Another Message Board

[stef-the-kicking-cuty]

Hey there,

today, I have another little problem and I didn't know, where to put it. If it's wrong just put it somewhere else. I just thought, it would fit good in here as "Coping with ignorant people" .

This was actually a stupid coincident and now I have a problem and don't know how to deal with it . OK, well, since I help german celiacs who want to travel into the US. I had one case where I had to "google" for some supermarkets and I also went to the yahoo search line. And instead of the supermarket there popped a site up with another message board. On this message board (pregnant) women talk about problems with their kids. And they were also talking about celiac there and since my husband and I want to have a kid in the near future I couldn't help it (i was just curious) and read more, and more, and more... And than I found a thread with this woman who had different problems with her son. And it sounded soooo like celiac disease. So i told her about it and our message board. And then this other woman showed up and told her practically against it and how allergies would be much more severe than celiac and now I don't know, what to do anymore and I thought I ask you guys. I mean, i have allergies, too. But I think celiac is much more severe. But maybe that's just me...

Here is the thread from this message board:

Open Original Shared Link

This is on www.mothering.com, I just thought, i'll type in the thread-link, cause this message board is huge . I'm stef_g on that message board. It sure would help, if a few of you guys would sign up there and say a few words, too. It REALLY sounds celiac-like. That's just my opinion. And wouldn't it be cool, if we could probably help somebody else?

Hugs, Stef

[celiac3270]

That's absolutely ridiculous that she could say that an allergy is always worse or more likely the culprit. Sure, allergies can have harsh consequences, like someone with a peanut allergy having their throat close up and stuff, but celiac is:

A) EXTREMELY COMMON (1/133)

CAUSING OR LINKED TO SO MANY ADDITIONAL COMPLICATIONS (thyroid problems, lupus, diabetes, cancer, osteoporosis, ulcers, depression, skin problems--dh, anxiety).

C) Not just a mere hindrance as some allergies are, but a lifechanging experience. Some people are sick for years before finding out and celiac is not only something you have to deal with physically, but mentally with the anxiety, depression, mood swings that can accompany it, and burden of worrying about contamination and calling companies. This is why it's called a "disease" and not a wheat allergy.

I think it's absolutely terrible that someone would belittle it or suggest that a disease that affects so many people is unlikely to be the cause. I'm sorry for ranting, but I can't stand that someone would suggest that you're likely wrong about this.

[Carriefaith]

Some people get very defence if you tell them that what they have (or a son/daughter has) isn't THAT bad. She just took what you said the wrong way because she probably doesn't understand celiac that well. Maybe try explaing in simple terms that celiac is a life long disease resulting in permanent intestinal damage if a gluten free diet is not enforced. Therefore, IF her son has it, then permanent damage is constantley occuring, which may reult in many problems later in life (like cancer). I think you've done the right thing in letting her know about celiac and that there may be other things going on with her son.

[tarnalberry]

I think we need to be understanding as well... Some food allergies ARE life changing - and in fact more scary than celiac. I've already been blasted for "belittling" this condition, so let me explain. Yes, if we recurringly ingest gluten, we increase our risks of potentially fatal complications. Yes, if we ingest gluten once, we risk a host of symptoms that, at their worst, can stop our lives cold in its tracks for days or weeks making us, and those around us, miserable physically, mentally, and emotionally. So celiac is lifechanging, and challenging physically and mentally.

But an anaphylactic food allergy (or one that progresses to anaphylactic reactions, and they can progress quickly) is also life changing and challenging physically and mentally. If an allergen is ingested by someone who is allergic, once, they can be dead in half an hour without proper treatment. For some who are extremely sensitive, they don't even have to ingest it. In cases like these, when imminent death is so potentially close, the paranoia that someone develops is lifechanging and extraordinarily mentally challenging.

I read the thread, and can understand the reason she reacted the way she did. medaka has a good point that people can get defensive when we start comparing - and think about the fact that she has probably gotten the same response you may have: "a little won't really hurt you" which may be how she interpretted your statement. I'm not saying that celiac isn't very severe as well, but for those for whom the allergy is immediately life-threatening, I'm not sure it can get any more severe than that. Though, at the end of the day, comparing them... meh... probably not as productive as just checking all the options and doing what needs to be done (avoiding the foods).

[Guest gillian502]

I read the thread you provided and I agree she was too defensive with you. She took your good advice the wrong way, and unfortunately, that defensiveness often stops people from getting the proper tests and looking at other answers. She says in her reply, "My son does NOT have Celiac Disease!" and yet she makes no statement to back up how she knows that for sure...such a shame, her kid has clearly never even been tested for this and she seems too hellbent on BEING right instead of DOING what's right. Oh, well, as you said in your message to her, you can lead her to water but can't make her drink!

[KaitiUSA]

I agree she responded way too defensive. I mean you gave some very useful information and they could test for it before saying that it is not celiac disease. If he is allergic to gluten and has the same symptoms why not be tested? It doesn't make sense not to rule something out. She even said you gave useful information after your first post and then she changed it and said you were giving false information. I think certain types of allergies can be very serious and instantly life threatening. Celiac disease is also very serious and slowly kills you. You gave her useful information and what she decides to do with it is up to her.

[stef-the-kicking-cuty]

Thank you all for your very good responses. I couldn't have said it better! But instead of repeating everything you said, I just will put a link to this thread. I think that will be fine with you guys . But the mother that literally exploded, isn't the mother that asked fortunately . The mother that asked for help was alwayslearning2. And you're right, it won't hurt to get tested. At least you know for sure then. And who knows, if you know you have it and stick to the diet, you might lose some allergies as so many celiacs I already heard of. Thanks again and here we go

Hugs, Stef

[Twister2]

While I' m certain that allergies can make people seriously ill.....some children grow out of them by adulthood.(My husband outgrew a severe peanut allergy) Not so with Celiac disease. You have it for life, and it often goes hand in hand with other devastating auto-immune diseases like MS and Lupus. I'm pretty sure those are worse than allergies. She states that we are the ignorant ones for not knowing about allergic conditions when she obviously knows NOTHING about Celiac disease. Maybe she should try living with a Celiac for a day and see how much work it requires just to feed yourself at times.

[angel-jd1]

Come on.......do you really think we should be calling people "ignorant" if we REALLY want to help them?

I think they have the information now, you have presented it. I don't think it is necessary to go "gang up" on their group and stuff. That is just terrible.

Groups like theirs and ours are supposed to be places to feel safe and be able to talk about things. When people get all angry it doesn't seem much like a safe place to be and be able to express your opinions (much like the situation lately on this board with red).

Tarnalberry is very right, we need to have understanding also. Both allergies and celiac are very serious conditions. Depending on the severity of the allergy it can be extremely scarey. Celiac, as we know can be scarey

The info is out there, leave it at that. You have tried to help. It is up to them to make their own decisions from here.

-Jessica

[Jessica36]

While I' m certain that allergies can make people seriously ill.....some children grow out of them by adulthood.(My husband outgrew a severe peanut allergy) Not so with Celiac disease. You have it for life, and it often goes hand in hand with other devastating auto-immune diseases like MS and Lupus. I'm pretty sure those are worse than allergies. She states that we are the ignorant ones for not knowing about allergic conditions when she obviously knows NOTHING about Celiac disease. Maybe she should try living with a Celiac for a day and see how much work it requires just to feed yourself at times. 

Hi All since I know one or 2 responded by MDC and I have read this board before, but as my son has allergies and not Celiac I haven't posted I felt my need to post on here so you understood what we were attempting to convey.

Twister did you read my post? I understand what it is to live like a Celiac. Since June my ds' diet has been avoiding the following. Egg, Soy, Oats, Peanut, Dairy, Wheat, Corn, Peas, Rye, Avoiding fish. So for one day I would like you to eat like he and I have had to. (I say both of us as I have to follow his diet as I am still nursing for his comfort and per Dr's Orders to ensure he gets enough nutrition) Make sure you read all the labels for the other names of Egg and Dairy, though I am sure you are used to doing that.

My son and I have lived on Rice Flours and Tapioca's. Had to avoid bean flours as he keeps testing positive to different ones. We can have Chicken, most of the time, same with Beef. We don't eat out at ALL except for McD's and that is scary most of the time, but how do you deprive a 2 year old of fries?

Also does having Celiac's preclude you from going to common places? If my son comes in contact with Egg or nuts of ANY kind, he immediately has a reaction which requires a visit to the hospital, a dose of Benadryl, an Epi-pen and possibly an IV. Just a peek into what can happen, just going shopping.

And I am sure you are all familiar with the wonderful taste of Rice Noodles (since we can't have Soy or Corn ones). We aren't saying Celiac's isn't Difficult and a lifestyle adjustment to live with, nor or we saying it isn't a life-long disease. Many children that have allergies to wheat, then get tested for Celiac to try and make sure they are avoiding the proper foods.

I believe all we were trying to state back is that you need to look at ALL the options. Stef's information was Great and we gave her kudos for that, but her allergy information was incorrect, we just tried to give her correct information.

Oh and you don't ALWAYS out grow allergies. My son's IgE allergies that cause his EE are for life. You don't know when or where a flare will occur and what it could do to you, just like you don't with Celiac's or Lupus. They are also finding that many people with MS also may have EE also. OR even worse and I FEEL for these people, not only do they have Celiac, but they have EE/EC/EG on top of that, which further limits your diet. I don't want this to be "hey my disease is worse then yours", like all of you I wanted to present the correct information.

So again if anyone wants to know what My son's life and Mine are like please read this link for general information Open Original Shared Link and this link Open Original Shared Link for an exact definition of Eosinphillic Disorders, who knows maybe it can help you.

Also note I am VERY happy that the Celiac's have come as far as they have. With out what you have all learned my son wouldn't have been able to have his gluten-free, CF, SF Pizza Back.

Jessica

[kvogt]

Thank you for helping me realize how lucky I am to only have celiac disease and few IgG food reactions. I know I can eat anything once, that won't do worse, than wish it would kill me.

[Jessica36]

Your Welcome, I am sure my 2 year old feels the same way when ever he injests one of the 11 things he shouldn't eat and cries, "Mama tum-tum hurts" and is up for hours only sleeping for 5 or 10 minutes at a time.

~J~

[celiac3270]

I apologize if I came across as belittling allergies--I was just annoyed that someone would suggest that it wouldn't be celiac disease or that allergies are always worse than celiac. I know they can be--more restricting in diet, more severe if the allergen is injested......just, sorry if I offended you, Jessica, or anyone else.

[debmidge]

I hate getting into situations where it's a "can you top this" game. Almost got lassoed into one with same allergies vs. celiac situation with the Customer Service Rep at Fiber Choice when I called to find out if they were gluten free - I asked if gluten free could be written on their label, and she was a snot nose and mentioned that nut allergies were more important than celiac intolerance due to sudden death; but in midst of this one-side conversation I realized that I needed to merge my info with theirs. So I agreed just to defuse the situation. Then I realized that celiacs have to merge and ride the "coat tails" of the allergy group when it comes to this topic. It should be agreed that immediate allergic reaction (death) is frightening but also that the celiac reaction, if left undiagnosed/untreated, can be death on the installment plan. Both groups need to work under an "umbrella group" to disseminate their information and work together to get label issues cleared up and to educate the public. We should be friends with co-existing health issues which are similar but different. That being said, those on the "allergy" side should not downplay celiac either, but realize that taking the celiacs in would strengthen their cause.

[KaitiUSA]

debmidge-I couldn't agree with you more.

I know I get mad when people downplay celiac and I bet people with allergies have that same reaction if they feel someone is downplaying that. They both are very serious. We do all need to work together I'm sure we could all learn a lot from each other.

[Jessica36]

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!

[hsingmama]

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

[Twister2]

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!!!!

[hsingmama]

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

I give up.

[celiac3270]

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.

[mommida]

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

[Twister2]

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.

[cdford]

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.

[stef-the-kicking-cuty]

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

[Jessica36]

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