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Need A Pep Talk


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#1 SuperMolly

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Posted 10 September 2010 - 08:04 PM

Hey Everyone...
I am feeling very frustrated with Celiac Disease and cross contamination these days. My husband is encouraging me to make the house gluten free so we don't always have to be so careful and so I can better avoid cross contamination. I have no desire to eat gluten. What is hard for me is with 6 kids and a husband that can have gluten, why would I force them to be gluten free? There is so much "good" food out there. I know we would all be eating healthier if we were gluten-free, but I don't feel like having food battles with them. I feel like I am consumed by thinking about gluten all day. I wish I had other people around me who had to live perfectly gluten free. My friends and family support me, but nobody truly knows what it is like to live with celiac disease unless they have it too.

I feel selfish to make my family sacrifice their diets because of me. This is stupid because I know if my hubby or one of my kids was diagnosed with celiac disease I would do everything I could to make the house gluten free. I guess the fact that I can still function when I've been glutened makes me a bit lazy. I don't feel like I'm dying anymore. I feel better most of the time, but boy do I get crabby and have quite the stomach aches when I have a speck of gluten! I'm starting to wonder how important it really is to avoid all cross contamination.

I have a poor me attitude lately and that is not healthy either. How do you all handle living with celiac disease without getting discouraged?
  • 0
I've suffered from intestinal problems since childhood.
Age 30--I was told I had IBS and that I'd just have to "get used to it".
Age 33--I went wheat-free and felt a little better.
Age 36--A friend was diagnosed with celiac disease and recommended that I get tested too. I demanded a test even though the doctor assured me I did "not want it". Test was positive and I have been gluten free ever since.
Age 37 and Counting--I never would have guessed my body could feel this great! :)

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#2 Wolicki

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Posted 10 September 2010 - 09:34 PM

Hi Molly,
It just takes time to learn how to deal. If you would absolutely go gluten free for your family if the roles were reversed, why not "let" them do the same for you?
Isn't it better for your kids to have a healthy, happy Mom? Your husband is supportive, and I would bet your kids will be, too.
My younger son and I are diagnosed celiac (he's 10). We made the whole house gluten free, so my 13 year old just had to live with it. He was 100% gluten free for about 6 months, then when he actually had gluten, he got sick. Turns out he is at the very least gluten intolerant. The deal I made with him before we knew he had issues is that at home, there will be no gluten. If he wanted to go out with friends or whatever and eat gluten, he was free to, just not in the house. It worked out well.
It really is better for your whole family is you are well to take care of them (and not so crabby). Just my two cents, for what it's worth. It sure does make coping easier when you're not constantly worried about getting glutened in your own home.
Janie
  • 0
Gluten free is not so bad! If you are new, hang it there, it gets easier!

#3 Skylark

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Posted 10 September 2010 - 09:48 PM

I handle living gluten-free by hanging out here! I got really sensitive like you are and started to think I was losing my mind. I have a couple friends who are gluten sensitive, but they don't have to worry about crumbs the way I do.

Your family can't be enjoying a crabby, stomach-achey mom and you have your husband's support which is wonderful. I'd say go for it and take the house gluten-free. Remember that your kids and husband can eat as they like when they're away from home. Besides, with a celiac mom gluten is not necessarily good for your kids. Limiting their exposure to it is not a bad thing health-wise. Remember they are all at risk for celiac because you have it.
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#4 ravenwoodglass

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Posted 11 September 2010 - 03:50 AM

You have gotten a couple great answers already and I agree with them fully. It is not selfish to need to be healthy and if getting glutened makes you crabby that is going to affect your family. Having a healthy and happy Mom is very important and you want to be around for them as long as you can. Since your DH is willing to do the whole house gluten free that is a hint that your glutening may be affecting the household more than you realize. Take him up on it.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 cassP

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Posted 11 September 2010 - 05:10 AM

i understand the "poor me" thing totally. ive been craving gluten A LOT lately... yesterday at work, all i could think about was those "crispies" from Long John Silver!! when i was a kid, you could just buy a side of crispies (left over fried breading".... and ive been feeling so much better- that im starting to get that false sense of security- like maybe i could handle one meal with a gluten cheat... but the last time i did that, i almost threw up.

anyways- try not to stress- it sounds like you have a very supportive husband :) and making the house gluten free can be easier than it sounds...
i follow this girl on twitter- she's gluten free & fructose free... and she's made the whole house gluten free- her family is fine with it.. here's a link to her blog- she's got a lot of recipes on there, she's always cooking & baking for her family

http://christopherandtia.blogspot.com/
  • 0
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#6 SuperMolly

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Posted 11 September 2010 - 06:11 AM

It just takes time to learn how to deal. If you would absolutely go gluten free for your family if the roles were reversed, why not "let" them do the same for you?
Isn't it better for your kids to have a healthy, happy Mom? Your husband is supportive, and I would bet your kids will be, too.


I've been at this for almost 2 years already. Will I ever get used to this lifestyle?
My husband and 2 oldest kids are supportive of going gluten-free at home, my middle 2 keep telling me how unfair it would be if they can't eat gluten at home. How do you deal with that?

Thanks for the encouragement. It is nice to know I'm not the only one living with this.
  • 0
I've suffered from intestinal problems since childhood.
Age 30--I was told I had IBS and that I'd just have to "get used to it".
Age 33--I went wheat-free and felt a little better.
Age 36--A friend was diagnosed with celiac disease and recommended that I get tested too. I demanded a test even though the doctor assured me I did "not want it". Test was positive and I have been gluten free ever since.
Age 37 and Counting--I never would have guessed my body could feel this great! :)

#7 SuperMolly

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Posted 11 September 2010 - 06:15 AM

I handle living gluten-free by hanging out here! I got really sensitive like you are and started to think I was losing my mind. I have a couple friends who are gluten sensitive, but they don't have to worry about crumbs the way I do.


I can totally relate with you. I think I'll start "hanging out" here more often.
Thanks for your support!
  • 0
I've suffered from intestinal problems since childhood.
Age 30--I was told I had IBS and that I'd just have to "get used to it".
Age 33--I went wheat-free and felt a little better.
Age 36--A friend was diagnosed with celiac disease and recommended that I get tested too. I demanded a test even though the doctor assured me I did "not want it". Test was positive and I have been gluten free ever since.
Age 37 and Counting--I never would have guessed my body could feel this great! :)

#8 SuperMolly

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Posted 11 September 2010 - 06:18 AM

Since your DH is willing to do the whole house gluten free that is a hint that your glutening may be affecting the household more than you realize. Take him up on it.


I guess I never thought of it that way. Thanks for pointing that out to me.
  • 0
I've suffered from intestinal problems since childhood.
Age 30--I was told I had IBS and that I'd just have to "get used to it".
Age 33--I went wheat-free and felt a little better.
Age 36--A friend was diagnosed with celiac disease and recommended that I get tested too. I demanded a test even though the doctor assured me I did "not want it". Test was positive and I have been gluten free ever since.
Age 37 and Counting--I never would have guessed my body could feel this great! :)

#9 SuperMolly

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Posted 11 September 2010 - 06:22 AM

i understand the "poor me" thing totally. ive been feeling so much better- that im starting to get that false sense of security- like maybe i could handle one meal with a gluten cheat... but the last time i did that, i almost threw up.

I do feel so much better and am starting to think a little cc won't really matter. My friends point out to me how sick and how horribly thin I was when I was finally diagnosed. It's easy to forget how terrible that was when you finally feel good. Sometimes I think I should consume some gluten so I will get really sick and not want to be lazy anymore. Stupid.
  • 0
I've suffered from intestinal problems since childhood.
Age 30--I was told I had IBS and that I'd just have to "get used to it".
Age 33--I went wheat-free and felt a little better.
Age 36--A friend was diagnosed with celiac disease and recommended that I get tested too. I demanded a test even though the doctor assured me I did "not want it". Test was positive and I have been gluten free ever since.
Age 37 and Counting--I never would have guessed my body could feel this great! :)

#10 SuperMolly

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Posted 11 September 2010 - 06:34 AM

Besides, with a celiac mom gluten is not necessarily good for your kids. Limiting their exposure to it is not a bad thing health-wise. Remember they are all at risk for celiac because you have it.


I have had my 5 older kids tested...one was tested twice, and they were all negative. I am still surprised none of my children have celiac disease. I realize it can show up at anytime, so it would be good for them to not consume as much gluten. Thanks for the encouragement. :)
  • 0
I've suffered from intestinal problems since childhood.
Age 30--I was told I had IBS and that I'd just have to "get used to it".
Age 33--I went wheat-free and felt a little better.
Age 36--A friend was diagnosed with celiac disease and recommended that I get tested too. I demanded a test even though the doctor assured me I did "not want it". Test was positive and I have been gluten free ever since.
Age 37 and Counting--I never would have guessed my body could feel this great! :)

#11 Skylark

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Posted 11 September 2010 - 07:40 AM

I've been at this for almost 2 years already. Will I ever get used to this lifestyle?
My husband and 2 oldest kids are supportive of going gluten-free at home, my middle 2 keep telling me how unfair it would be if they can't eat gluten at home. How do you deal with that?

You and your husband gently and firmly tell them that the rules are no gluten. I always got "be grateful you have food in your belly and a roof over your head" when I complained about a household rule I didn't like. ;) You and your husband are in charge when a major health decision needs to be made, not your kids. It's not "fair" that you have celiac, but things could be a lot worse and coming home from school to a home cooked gluten-free dinner is not exactly a hardship. Your two older kids will set an example, which will help.
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#12 rtc

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Posted 11 September 2010 - 11:55 AM

You and your husband gently and firmly tell them that the rules are no gluten. I always got "be grateful you have food in your belly and a roof over your head" when I complained about a household rule I didn't like. ;) You and your husband are in charge when a major health decision needs to be made, not your kids. It's not "fair" that you have celiac, but things could be a lot worse and coming home from school to a home cooked gluten-free dinner is not exactly a hardship. Your two older kids will set an example, which will help.


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#13 rtc

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Posted 11 September 2010 - 12:35 PM

Please look at it from the standpoint of what you're getting,not losing.
I was diagnosed as Type 2 diabetic in 1986 and "gave up" sugar
(refined white and brown).Did not go on insulin until last year,
due to age and celiac recovery weight gain.People used to tell me
they just couldn't "give up" sugar...would ask them if they
could "give up" kidney failure,heart trouble,blindness,etc.
It seems that the older you are the harder it is,and that's
understandable.IMO it has to do with acceptance...this is probably
why AA makes their folks get up and say "My name is so and so
and I'm an alcoholic".
Celiac is unfortunately far worse than diabetes IMO.We are
talking about the destruction of the small intestine,cancer and
a lot more bad things here,not just a sugar spike.
Please look upon gluten as poison...that's how I see it (and sugar).
Place it on your no-no list and put safe things on your good list.
And,as the Apostle Paul said,look to the future and forget the past.
There are many wonderful folks here and you're not the only one
in this fix.There are more workarounds today than ever-
you just have to find them.
My concern is also for your children since this stuff is passed on...
they could have the gene and it has not fully kicked in yet.
The more I learn,it seems that too much gluten is not good
for anyone.
But please note,your feelings are completely normal-and
you're not alone.All of us recall the good old days,but
they must remain the old days.
Best Regards...
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#14 GFinDC

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Posted 11 September 2010 - 03:12 PM

You may be doing your children a big favor if you teach them how to eat gluten free now. Especially if you put them on a whole foods diet. You would be eliminating all the preservatives and food colorings in processed foods for one thing. And also reducing their constant exposure to gluten and soy which is in so many processed foods. None of that is bad for them, and if they did develop celiac later they would be prepared to cope.
  • 1
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#15 SuperMolly

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Posted 12 September 2010 - 08:30 PM

Please look at it from the standpoint of what you're getting,not losing.
There are many wonderful folks here and you're not the only one
in this fix. But please note,your feelings are completely normal-and
you're not alone.All of us recall the good old days,but
they must remain the old days.

Thank you everybody for your encouragement. I still feel overwhelmed, but my hope has been renewed. :)
It is nice to know I'm not alone in this.
  • 0
I've suffered from intestinal problems since childhood.
Age 30--I was told I had IBS and that I'd just have to "get used to it".
Age 33--I went wheat-free and felt a little better.
Age 36--A friend was diagnosed with celiac disease and recommended that I get tested too. I demanded a test even though the doctor assured me I did "not want it". Test was positive and I have been gluten free ever since.
Age 37 and Counting--I never would have guessed my body could feel this great! :)


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