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Getting Others To Understand Celiac


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#1 Guest_memoryofaspyn_*

 
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Posted 14 September 2004 - 07:33 AM

Last night I made one of my very first gluten-free meals, after it was all said and done I found out that sour cream has Gluten (i would have never guessed) I told my husband, I was so sad, all that hard work to make sure it was gluten-free, and then it all got screwed up.

My husband said, he thinks I only need to limit gluten, and that will make things better, when I told him thats not the case, that once you go gluten-free, you should stay gluten-free, he says " I dont Buy That" how can I explain to him why it is so important to stay gluten-free, he just doesnt understand why it is such a big deal. I even tried to use a peanut allergy as an example, that didnt work either :( . Please someone help me!! Thank you so much!! :D
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#2 Guest_PastorDave_*

 
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Posted 14 September 2004 - 09:14 AM

I hope that eventually your husband will understand. I usually explain it to be more like Diabetes. You need to make sure that you stick to the diet closely, I have noticed that if sometimes someone sees a diabetic eating sugar and has a fit. This might help.
Another thing to remember is not to be too hard on yourself at first. As you get used to it, it will be easier to avoid gluten. I remember after I had been gluten-free for about a month, I was at the store and they had free samples of Uncle Ben's Microwavable rice, being male I can not refuse the free samples and I thought, it's only rice...after eating it, we thought about bying some (I know microwavable rice, how lazy can you get) so my wife (who is a wonderful support) read the ingredients...oops wheat flour. In RICE!!!! Who knew? I just learned to be more careful, and realize that there will be mistakes.
Take care.
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#3 Guest_Lindam_*

 
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Posted 14 September 2004 - 09:28 AM

:) Hi, I hope this helps you. This is what I got from Daisy Brand Sour Cream:
Is Daisy Sour Cream gluten free?
Yes, Daisy Sour Cream is gluten free. Our Daisy Regular and Daisy Light Sour Cream products contain no starch. We use cornstarch, not a wheat starch in our Daisy No Fat Sour Cream.

My husband used to say the say thing to me. "You never used to have this problem" or "Why all of a sudden?" So I had my GI doctor talk to him. He told him that celiac disease can "rear it's ugly head" at any time. And absolutely NOT can I have anything that had gluten it in. Stay strong and stay gluten free.

If you ever need any advise, this is the place to come. Everyone speaks very candidly here. And the combined knowledge is wonderful.

Good Luck!!! :rolleyes:

Linda
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#4 Carriefaith

 
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Posted 14 September 2004 - 11:25 AM

When I explain celiac disease to people they almost always understand (or at least they pretend to understand). :)

I usually say something like;
When I eat wheat, rye, barley, and oats it damages my intestines and makes me really sick.

That usually gets the point across about how the severe the problem is and that it is not just an allergy and will "go away".

Good luck!
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Carrie Faith

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

#5 Carriefaith

 
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Posted 14 September 2004 - 11:29 AM

That usually gets the point across about how the severe the problem is and that it is not just an allergy and will "go away".


OOPS! :blink:
I meant that is it not just an allergy that will NOT just "go away"
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Carrie Faith

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

#6 tarnalberry

 
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Posted 14 September 2004 - 12:06 PM

I'm sorry your husband isn't more supportive. You could have him post here, read some research on the internet, or meet with your doctor, but at the end of the day, he really just needs to respect your choice. Try being patient with him, it's a big change for him too, but whether he believes or not, slipping you gluten would be cruel! (I"m not saying you said he did... just rambling. :-) )

(Depending on his background, you might appeal to him logically. The basis of our problems with gluten is chemical. We've got a type of molecule floating around in our body, designed to meet up with food we eat, that triggers our immune response. The whole point of our digestive system is to NOT miss any thing going through the digestive tract, so it will get noticed.)
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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

#7 Guest_memoryofaspyn_*

 
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Posted 14 September 2004 - 01:20 PM

My husband has been very supportive for the most part, he even decided he would try the gluten free diet with me, he just doesnt understand how slipping occasionally would hurt things. I just found out we have a seminar coming on October 1 & 2 I am going to try and comvince my husband to go with me so he can learn more about the condition. Thank you for all the help, if anyone else has any advise please let me know. Thank you, you have all helped me very much, i am so glad there is a place to go when you just dont know what else to do.
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#8 babiesatemydingo

 
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Posted 15 September 2004 - 06:34 PM

Sounds like a good idea taking your hubby to the seminar.I have had this for a few years and find it hard also to convince people that it really is important that I NOT eat stuff with gluten in it.Usually if I tell them about the villi in the stomach and how it attacks it they start to get it and understand the consequences I can face with lack of vitamin absorbtion and the pain and ect. etc.....

My family has just come to accept it and understand that it really is up to "me" to take care of my health and do whatever they can to support me in that goal.It seems after a while it just becomes a lifestyle and less of an issue in our day to day.Beer was definately a problem though :D
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#9 clanning

 
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Posted 16 September 2004 - 06:13 AM

[COLOR=purple]
Newbie,

I know exactly how you feel. My husband is very wishy/washy about me being gluten-free. In Feb 04 I was told by my GI doctor that I would not be around in 3 yrs if I did not go on a strick gluten-free diet. I decided to join this forum for support because I was half way being gluten-free. Once I started passing out at work (I am in the medical field) at home etc., I know there is some truth to it. I've been very strict about it for a few months now. When I slip and eat a brownie or cookie that I make for the rest of the family; I have to go to bed because I literally get so light headed I can't stand.

I have know for almost 10 yrs ago I was told that I had "non tropical spru" that was it. Then 7 yrs ago I was told to avoid wheat, that was it. The last 3 yrs I've been told a little more. Every year my biopsy comes back worse. The GI doctors tell me every time I have a scope done, be prepared for us to come back and tell you that there is cancer. :o

My husband makes comments to me, "why make us suffer just because you have to" "it's not our fault, we don't have to eat like that" "you do what you want, it's your life" "if this is a gluten-free meal, I'll take the kids and we will go out to eat" etc....

It's hard, depressing!!! If he drinks beer, I know tell him he can not kiss me. Maybe that will get it through his head. I've increased my life insurance policy thinking that will make him wake up.

Advice from other in this forum, get a cook book. It has made a big difference for me. These people here really do know what they are talking about.

Charlotte
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#10 Guest_memoryofaspyn_*

 
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Posted 16 September 2004 - 11:10 AM

That is really to bad that your family isnt more understanding, especially knowing the severeity of your condition. I hope that he will soon understand that your health, and your life depends on you obiding to the gluten-free diet. I think it will just take more research on celiac to convince my husband that I need to stay gluten-free, although I have been trying to go gluten-free, but I always find out after the fact that something had gluten in it, this is a very hard diet, and it is even harder to know what you can and cant have. For all of you who have been gluten-free for longer than 1 day, You are my hero's I am trying and I hope to say very soon that I am officially gluten-free!! Thanks for all your help!
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#11 bikerblue

 
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Posted 16 September 2004 - 11:59 AM

I'm in the same boat... both my kids diagnosed this week by Enterolab and my extended family just doesn't believe they have any problem with it. I explain it but I think they all think I am just crazy....

I noticed memoryofaspyn that you mentioned you are going to a conference on Oct 1 and 2. I am also. I was wondering if it is the one in North Dakota? I am hoping to bring back my information for my extended family to believe I am making the right choices!!!!

Tami
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#12 Guest_PastorDave_*

 
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Posted 16 September 2004 - 12:23 PM

I was just reading some other responses and I just remembered something else I usually say to some of the youth I work with at the church. I tell them that allergies will kill you quickly, but Celiac is a slow painful death (OK not a good thought for us), and we won't always feel sick, but it is still making us sick. The slow painful death idea really makes people realize that it is serious.
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#13 CoolCat1

 
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Posted 18 September 2004 - 02:15 PM

Clanning, I'm sorry your husband is not supportive. Mine is ok with rice noodles etc. but it sure it difficult...sauces, gravy etc. I made brownies with a gluten-free mix and put apples and peaches in the middle of it. My kids loved it. They said it was better than regular brownies. However, I almost cried today when my husband and I went to my favourite Chinese restaurant and everything they made was marinated with KIKOMAN soya sauce. I asked if they could make me something with my no name brand soya(gluten-free) and they did. They said next time I come I could ask for that too. I was so happy! I almost feel like a regular person. I have been gluten-free for 6 weeks but it is manageable if you can find a gluten-free bakery and bake some yourself. Good Luck. If I were you I would serve them all rice pasta and other gluten-free things. My family is used to lots of gluten-free food here.
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#14 Guest_NitaB_*

 
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Posted 27 September 2004 - 09:33 PM

I was just reading some other responses and I just remembered something else I usually say to some of the youth I work with at the church. I tell them that allergies will kill you quickly, but Celiac is a slow painful death (OK not a good thought for us), and we won't always feel sick, but it is still making us sick. The slow painful death idea really makes people realize that it is serious.

My family has become supportive, mostly after reading about celiac disease online. What bothers me is, my Dr. has said 2 wrong things to me recently. One, that if I was having trouble with the gluten-free diet, I could go off of it, as Celiac never killed anyone! :o And I'm slowly gaining weight, when I didn't need to, and she said I shouldn't with Celiac, as they always lose weight on this diet! Not from what I read! Just not having diahhrea alone, is enough to make me gain! That and the higher protein levels I've been eating. And with the fatigue, I'm not as active. I've only gained 2 or 3 pounds, very gradually, but wanted to lose a few, instead.

I'm still trying to decide whather to try to find another Dr., one who has some understanding of celiac disease. The sad part is, there is a Dr. in this clinic with celiac disease! You'd think the whole clinic would be better at it!
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#15 plantime

 
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Posted 28 September 2004 - 09:33 AM

From reading this thread, I now believe that I am very fortunate! My family is extremely supportive, they all help me read labels. They don't as a rule like my gluten-free foods, but that's ok with me. My GI doc was satisfied that I knew what celiac is, and how to deal with it, so he leaves me alone about it. If I have questions, I don't wait for him to find an answer, I look it up and ask on here instead. This board is a wonderful blessing for me, I get a wide variety of solutions to a problem. Between my biological family, and my board family, I am most fortunate!
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25




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