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Scared

shan

By shan
in Coping with Celiac Disease

Recommended Posts

shan Contributor
shan
Posted

hi, i am new here,so mind my ramblings!! My dd (2 yrs) was dx 6 weeks ago and we have had amazing success on the diet (gained 2.5lbs, WOW) and now they want to test me and my hubby. Thing is i know its me, i have all the symtoms and he has a normal system. I am very scared of how my husband and his family will react, and if my husband will feel that he was cheated coz he thought he got a "normal" wife, when in reality i am a celiac. Am i just over reacting? or is this normal? my husbands says he'll tell his family to butt out of this and its his problem, but how will he react? i am so scared for the blood work, that i keep on pushing it off!! Just being a coward!!

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darlindeb25 Collaborator
darlindeb25
Posted

Has your husband's love for his daughter changed just because she is celiac? I doubt it. Celiac's are normal people too, we look the same, when we are happy we smile, when we are sad we cry, when we get cut we bleed--we eat differently. When a celiac goes gluten free, we feel better and we decrease the chances of so many other problems. Would you leave him if it's him that is celiac? It is possible that you both carry the genes.

Hun, if you are celiac or gluten intolerant, then you must get tested, or at least eat gluten free with your daughter. You can see the improvement in her, you will see it in you too. Get tested!!!!!

You want to know something else? I think soon we will find the gluten free people will be a bigger group than the people still eating gluten. I think our modern technology has made gluten intolerance explode.

gfp Enthusiast
gfp
Posted

shan: Its relatively common (but stupid) for the person with the gene to blame themselves....its not something you have any control over... apportioning blame is pointless!

Its relatively uncommon for families to actually blame the one carrying the gene....

In all probability you are more likely to find problems the family believing in celiac disease at all than blaming you...

Apart from anything else its still as likely he also has the genes... or partial ones anyway...

celiac disease isn't some death sentence, its not even serious if you follow the gluten-free diet....

If you looked hard enough you will probably find both of you passed on genes that will affect the health of the child... and probably more will be discovered... and this is quite outside celiac disease... If he's caucasian and normal European stock he has a 50% chance of carrying the gene anyway BUT ... its so pointless thinking of this in terms of blame...

i have all the symtoms and he has a normal system

The vast majority of people with the gene never develop celiac disease...

shan Contributor
shan
Posted
  • Author
shan: Its relatively common (but stupid) for the person with the gene to blame themselves....its not something you have any control over... apportioning blame is pointless!

Its relatively uncommon for families to actually blame the one carrying the gene....

In all probability you are more likely to find problems the family believing in celiac disease at all than blaming you...

Apart from anything else its still as likely he also has the genes... or partial ones anyway...

celiac disease isn't some death sentence, its not even serious if you follow the gluten-free diet....

If you looked hard enough you will probably find both of you passed on genes that will affect the health of the child... and probably more will be discovered... and this is quite outside celiac disease... If he's caucasian and normal European stock he has a 50% chance of carrying the gene anyway BUT ... its so pointless thinking of this in terms of blame...

The vast majority of people with the gene never develop celiac disease...

thanx all of you! i just need a bit of encouragement i guess to keep my spirits up! i know in my heart of hearts that if i do go on the diet i'll feel so much better and all the rest... but i also know that if i don't get an official dx i won't keep to it. see, i don't feel that ill that i can't live, so i'll for sure cheat if i am not dx.

No, my husbands love has not changed towards my dd, if it has its only for the better. i guess you could call it guilt feelings... and the fact that my dh is scared of all the changes that ive done around the house so that my dd shouldn't get glutoned. don't really blame him. still...

Guhlia Rising Star
Guhlia
Posted

Your husband's reaction, in part, will likely have a lot to do with your reaction in relation to the dynamics of your relationship. Believe it or not, if you are diagnosed, it's actually a positive thing. The symptoms that you have will likely disappear. In addition to that, this is the best part, you will head off other potential health issues that are a result of untreated Celiac. Undiagnosed/untreated Celiacs are at a higher risk of developing other autoimmune conditions, osteoperosis, and cancer, as well as a host of other issues. Look at this as a chance to drastically improve your quality of life. Many people also notice that when they begin the gluten free diet their mood increases over time. You really have to be strict on the diet though for some of these things to happen.

par18 Apprentice
par18
Posted

I have always felt that when only one person in a family has to go gluten free it is very hard. When the person is a young child who really has no choice in the matter it can be even harder. The fact that you might have to go on the diet with her is only going to give support and validity to the end result and that is better health for both of you. If it were not for the inconvenient matter of eating out most people I feel would adjust very quickly. Except for the bread and pasta items most food is naturally gluten free anyway. The more a family can sit down to a meal and eat the same things the less singled out any member would feel. The lessons both you and your husband can instill in your daughter now (healthier eating) will only benefit her in the long run. Right now she is having to go it alone but if both you and your husband get on board (if only at home) the easier it can become for her in the future. Even if only you start the diet with her for now then your husband will be the "odd man out" and then the incentive will be there for him to join in also. Hope this helps.

Tom

ravenwoodglass Mentor
ravenwoodglass
Posted

In addition to the other great advice you have gotten I would like to say also that you don't know for sure what his gluten statis is yet. You may be surprised and find that he should be gluten-free also. After 4 years of gentle proding my supposedly asymptomatic DH was tested, he was, to everyones surprise, gluten intolerant also. His symptoms were very vague it seemed but he is a different person now, 1 year post diagnosis.

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Jo.R Contributor
Jo.R
Posted

I had a hard time facing up to being a celiac, but I feel so much better on the diet it is worth going and staying on. My husband was glad when I finally got the dx. The year prior I was much fun to be around. He'd work a 70 hr work week and have to come home to take care of me and the girls . I'd forget to do errands, make important phone calls, he'd have to call me during the day to remind me (I'd forget to look at lists). He was worried about what was going on. All in all he was plain tired out physically and emotionally. My biggest problem with him is it took awhile for him to understand that I wasn't going to be all better the minute I went on the gluten free diet. But I can take care of the kids and the house, and I remember to look at lists. I still have low energy and some problems with brain fog, and can still be a little moody but he is so happy with the progress (not to mention a sex life ;)). I am sure your husband will be glad to have a healthy wife back, not to mention all the support this will offer your daughter. I'm reading Celiac Disease A Hidden Epidemic by Peter H.R. Green, MD and Rory Jones. It really explains the disease and how it's come about. It's a good resource.

Good luck!

SunnyDyRain Enthusiast
SunnyDyRain
Posted

Would your Husband's family hate you if you were diabetic? Had High Bloodpressure? Had Heart Disease?

If you have celiac disease, take care of yourself, eat healthy and maybe you can avoid all the other problems further down the road. Would you rather be that picky lady who can't eat gluten, or that sickly lady with cancer, nerve damage, fibromyalsa, and what ever else they say this can contribute to it.

I'm sure your daughter would rather you be gluten free with her than sick when she is growing up.

ptkds Community Regular
ptkds
Posted

I know how you feel. My was also worried about my dh and his family. But he has been great. He gets a little frustrated, but he is supportive. One night we had to go out to eat w/ his family. His mom is pretty cheap and wanted to go to some fast food place. We wanted to go somewhere so that me and dd's could safely eat, but it was kinda pricey. He told his mom that there was no where else safe for his family to eat and he wouldn't take us to some place where we couldn't eat.

Your dh won't stop loving you because of celiac disease, or because you "gave" your dd the disease. One of your parents "gave" it to you, and they got it from thier parents. In my case, I got it from my mom. He isn't upset because she got your hair color/eye color/chin, etc. My dh is my biggest friend in this, though I know that at times it is hard for him.

Good luck

ptkds

wowzer Community Regular
wowzer
Posted

Celiac disease isn't the only genetic disease in the world. At least it is treatable by following a gluten free diet. I have a little sister that was diagnosed at a year old. At 52 I figured I may have it also. My bloodwork came out negative, but I have had much improvement on a gluten free diet. The odds are like 1 in 133 for celiac. I have a syndrome that is in 4000 to 5000. I have no idea where I got it from in the gene pool and will probably never know. I'm not sure knowing where it really came from makes a difference. It won't change anything. You just have to accept it and move on.

loco-ladi Contributor
loco-ladi
Posted

Now as I normally say at the end, this is just my .00000002 cents worth.....

Lets start with defining "normal" who decides what is and isn't "normal". Lets define normal as growing up healthy and happy, that sounds normal to me. My nephew is allergic to (try to keep up with this ok) poultry of any kind, peanuts, dairy, eggs and wheat (ok, think i recalled everything but lets no quote me on that, lol) so would he be concidered "not normal" nope, he is a healthy and happy 7 year old who loves to eat hot dogs when he can find them without chicken, eats all the ham he wants on thanksgiving and his favorite thing is to play baseball with his friends... yuppers thats a normal kid dealing well with his food allergies..... If you and your husband give your child the support to behave just like a "normal" kid they will be a normal kid, if you treat a normal kid like they are not normal they will feel not normal.

I have been doing lots of research and happened on a book called "living gluten-free for dummies" I recommend it for anyone just starting out, it has alot of good information (that I could tell as like I said I am new to this) I can't find the exact quote in the book, however I recall it saying in one part that more people are being correctly diagnosed now than ever because the medical field (except where I live) is becoming more knowledable about it.......... I have a cousin who has had all the tests and she is more than definately a Celiac, and was mis-diagnosed for count them .... 43 years, she told me she knows exactly what her "trigger" was, incidently she has a daughter who is guess what age ;)

My sister, has a positve blood test(s) and went straight to the diet no messing with the biopsy for her she said, and my mother has all the symptoms but is in the "it wont happen to me" stage at this point....

Myself, yeah I am sure I have it as well, my husband is what the gluten gluttens would call "normal" (but lets recheck what is normal) He is totally fine with it and has gone to the exent of eating his gluten laced foods at work not at home, when he is home he eats the same things I do and even said the pan of brownies I made last week were better then the ones he grabbed at the bakery the week before! Oh and "my" pancakes are so awesome he actually requests them when he knows I have the time to make them!

I also see you assuming you will test positive as well, that in my book makes 2 normal people living with one not normal person... gluten free wins the "normal" contest in your household! :lol:

shan Contributor
shan
Posted
  • Author
I know how you feel. My was also worried about my dh and his family. But he has been great. He gets a little frustrated, but he is supportive. One night we had to go out to eat w/ his family. His mom is pretty cheap and wanted to go to some fast food place. We wanted to go somewhere so that me and dd's could safely eat, but it was kinda pricey. He told his mom that there was no where else safe for his family to eat and he wouldn't take us to some place where we couldn't eat.

Your dh won't stop loving you because of celiac disease, or because you "gave" your dd the disease. One of your parents "gave" it to you, and they got it from thier parents. In my case, I got it from my mom. He isn't upset because she got your hair color/eye color/chin, etc. My dh is my biggest friend in this, though I know that at times it is hard for him.

Good luck

ptkds

thanks all of you for your help and encouragement!! i guess i was overwhelmed when i wrote in!! had a chat with hubby, and he said the worst part of it was that i wouldn't be able to make a certain dish for him!! (dunno if he was joking or not!) and he too told me he was scared how his fam would react, so now we are discussing how to tell them if it happans!! took blood tests today, so i guess i'll get results in1-2wks.

loco-ladi Contributor
loco-ladi
Posted

I talked about this with my hubby today.... more in detail as I have more details now than i did before, he is supportive of my eating needs and doesn't seem to mind his ever shrinking cupboard space and yes I know he keeps a "stash" of gluten food at work, but thats fine with me. He is fine with making the house my gluten free zone and will be working at transfering or eating everything that remains in the near future.... with luck we will be moving in a couple months to a new house that will start and stay a gluten free zone...

I also learned that once more my BIL is erquesting to move "home" in other words he is moving in with us..... hubby mentioned one issue would be food, certain things would not be allowed in the house, that impressed me! Is it any wonder I married him!!!

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