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Found This On Another Message Board


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31 replies to this topic

#1 stef_the_kicking_cuty

 
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Posted 08 February 2005 - 11:29 AM

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" :blink: .

This was actually a stupid coincident and now I have a problem and don't know how to deal with it :ph34r: . 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:

http://www.mothering...light=allergies

This is on www.mothering.com, I just thought, i'll type in the thread-link, cause this message board is huge :o . 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? :rolleyes:

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

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#2 celiac3270

 
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Posted 08 February 2005 - 01:24 PM

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)

B) 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.
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#3 Carriefaith

 
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Posted 08 February 2005 - 01:25 PM

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.
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#4 tarnalberry

 
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Posted 08 February 2005 - 01:53 PM

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).
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#5 Guest_gillian502_*

 
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Posted 08 February 2005 - 04:43 PM

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!
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#6 KaitiUSA

 
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Posted 08 February 2005 - 05:33 PM

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.
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Kaiti
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Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

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Feel free to email me anytime....jkbrodbent@yahoo.com

#7 stef_the_kicking_cuty

 
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Posted 08 February 2005 - 07:59 PM

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 :D

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

#8 Twister2

 
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Posted 09 February 2005 - 11:31 AM

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. <_<
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#9 angel_jd1

 
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Posted 09 February 2005 - 12:10 PM

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 :rolleyes:
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Jessica
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Kansas

#10 Jessica36

 
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Posted 09 February 2005 - 12:35 PM

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 http://apfed.org/ and this link http://apfed.org/egid.htm 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
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#11 kvogt

 
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Posted 09 February 2005 - 02:58 PM

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.
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#12 Jessica36

 
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Posted 09 February 2005 - 03:13 PM

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~
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#13 celiac3270

 
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Posted 09 February 2005 - 03:17 PM

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.
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#14 debmidge

 
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Posted 10 February 2005 - 03:23 AM

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.
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#15 KaitiUSA

 
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Posted 10 February 2005 - 05:53 AM

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. :D
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Kaiti
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Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com




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