Need To Vent...husband Doesn't Get It!

[beachbirdie]

My family and I have been on a two-year journey of discovery regarding possible wheat sensitivity. I've posted before about my son who seemed like he might have dermatitis herpetiformis, and had many digestive problems (including terrible heartburn) that all resolved on a gluten-free diet. I also talked about:

My middle daughter has terrible digestive issues with wheat, and feels better off of it, though she tested negative on all the celiac tests.

My oldest daughter had a lot of discomfort and bloating, as well as a rash on her arms, until she gave up wheat.

My mom, who has monoclonal gammopathy (precursor to multiple myeloma), chronic canker sores, edema and abdominal bloat, neurological issues (micro-seizures), short term memory loss, sleep apnea, strange cataracts that appeared in the last three years, insomnia, among other things. EDITED TO ADD: Oh yeah, the anemia, hypoparathyroid, and vitamin D deficiencies, as well as the protein deficiency!

I tested positive for a low-risk celiac gene (am DQ 2.2) and have Hashimoto's thyroiditis. I also tested positive for the ttg igg antibodies. I've been glutening, while waiting to see if my doc thinks a biopsy is in my future. Don't know if I should expect or go through with that or not.

Thing is, my husband just doesn't understand this issue, as much as I've tried to tell him. He doesn't understand that the need to avoid gluten is not just a fad, and it is not something that can be brushed aside once in a while like sugar for a diabetic. He doesn't want the radical life-style changes that come with a celiac diet, and he has said he thinks ALL our gluten-free foods have been horrible.

I'm beyond frustrated with him. He saw a show on the morning news in which he heard a Dr. Green (I'm guessing it was Peter Green) talk about how celiac only affects 1% of the population, and said to me "what makes you think you are part of such a small group?"

ARRGGGGHHHH!

My mom has a condition that affects 1% of population, and her particular type affects only 1% of those that have the disease.

Yeah, I could be part of the 1%.

I just want to scream!

End or rant, thanks for listening!

[Mateto]

No matter how much you explain it, some people will never understand it. That's what I've learnt in the short few weeks, and it's what I've been told here.

When I explain it, I refer to peanut allergies. I say "Would you give peanut butter, to someone with a nut allergy?" No. "Why not?" They'd react. With coeliacs, it's slightly different in that we may not react right away...and it's slightly different than an allergy, but it makes us sick and can potentially, though not right away, kill us.

It's been making me angry to see some people go on scrutinising gluten-free diets when they don't need to. It's not a fad, even though it is your own choice as to what diet you want to go on I suppose. Well for coeliacs, we do, so we can feel better and not sick all the time. Maybe send him to this very site?

[IrishHeart]

small percentage????

Let's do some math.

The world's population is approx. 7 billion people as of today.

1% is 70 million.

The current population of the US is approx. 313 million people.

1% is 3.1 million people.

Your husband thinks 3.1 million people is a "small group of people"? Invite this 3.1 million over for a BBQ and see how small this group is.

Want to feel "special"?

Your DQ2.2 accounts for 1% of the KNOWN celiac population.

"In at least 1% of coeliacs, DQ2.2 confers adaptive immunity to gliadin permitting coeliac disease."

The Journal of Immunology, 2005, 175: 254-261.

However, they still do not know how many UN-DXed celiacs may have this haplotype, so that number may change. (BTW, I am one of them)

It does not mean we AREN'T a part of this VERY large group of people with celiac disease. (It just means we're "rare" and I like to say "extra- special" )

[Bubba's Mom]

I tested positive for a low-risk celiac gene (am DQ 2.2) and have Hashimoto's thyroiditis. I also tested positive for the ttg igg antibodies. I've been glutening, while waiting to see if my doc thinks a biopsy is in my future. Don't know if I should expect or go through with that or not.

Thing is, my husband just doesn't understand this issue, as much as I've tried to tell him. He doesn't understand that the need to avoid gluten is not just a fad, and it is not something that can be brushed aside once in a while like sugar for a diabetic. He doesn't want the radical life-style changes that come with a celiac diet, and he has said he thinks ALL our gluten-free foods have been horrible.

ARRGGGGHHHH!

I just want to scream!

End or rant, thanks for listening!

I'm DQ2.2 too. We're not looking quite so rare after all? With positive blood tests I wouldn't touch gluten with a 10 foot pole!

I like the way IrishHeart worked out the numbers. Kind of gives a better perspective?

My hubby doesn't understand it either, but he's seen my reactions to gluten and knows it's real. That being said though, on our recent trip to Mayo he kept saying he thought they'd find something else wrong, that they could just give me a magic pill for and I could go back to being "normal".

[Di2011]

I hope *you* don't think being gluten free is a "radical lifestyle change". It doesn't need to be. These days I am saving money on the grocery bill and eating are far-far healthy diet. Lots of rice (inc. plain rice crackers and noodles) and fresh meat/veg/fruit, a bit of dairy now I can handle it. I've had to adapt but it is far from radical. When I had to add salicylates well that was a different story!

When your are ready to do it introduce things gradually. Replace the toaster and clear out the pantry/fridge today and tomorrow. Cook a weeks worth of gluten free (fresh.. no production foods) for a week with lots of potato/rice to fill his belly. Then tell him he's been gluten free at home for a week. Cooking risotto (I just do a quick/cheat version) is a great way to fill bellies, provide lots of flavour and hide vege from children.

Next check you bathroom. You should read all the labels, start shopping around locally (health food shops?) and online for gluten/wheat free alternatives. Just do one product at a time. It is like bread. You will try a few and eventually find what works for you and the family.

Your hubby might never get it but your kids (and you) need you to. If you need to go gluten free in silence. You know you have to do so just do it.

BTW I believe the DH (dermatitis herpetiformis the skin form of celiac) is extremely under-diagnosed. I think DH is about 10-20 percent of diagnosed celiacs so that would make DH .1 - .2 of 1%. I'm no expert but in my very public job in my area I would suggest to it is more like 10% of the general population have various severity (mostly mild) of DH.

[1974girl]

Sometimes it takes a doctor to tell your husband it is serious. I had that with some post pardum depression (my grandfather died 3 hours after my baby was born) My husband didn't grasp the severity of it. The doctor had to look him in the face and say "Just like you have diabetes, she has THIS." End of story. He totally got it. I guess it takes a Medical Degree for some men! BUT...have you had the EMA (endomysial antibody test) It is like 99% accurate. One lab didn't even offer that but the other did. That is what convinced my husband that our daughter had it. Yes, she had the genes but so do we. We are both carriers of DQ2 and do not have it. Our other daughter doesn't have the EMA so he doesnt' think she has it. (retesting next month) But...if you could have the EMA test and it show positive, then maybe he'd believe you without the expense of a biospy.

[beachbirdie]

No matter how much you explain it, some people will never understand it. That's what I've learnt in the short few weeks, and it's what I've been told here.

When I explain it, I refer to peanut allergies. I say "Would you give peanut butter, to someone with a nut allergy?" No. "Why not?" They'd react. With coeliacs, it's slightly different in that we may not react right away...and it's slightly different than an allergy, but it makes us sick and can potentially, though not right away, kill us.

It's been making me angry to see some people go on scrutinising gluten-free diets when they don't need to. It's not a fad, even though it is your own choice as to what diet you want to go on I suppose. Well for coeliacs, we do, so we can feel better and not sick all the time. Maybe send him to this very site?

I'd love for him to read here, but he won't! I know I'm just going to have to work around him. I'm thankful that I'm not a "super-sensitive", so I don't get sick from tiny bits of contamination. I don't really know how careful I need to be...my DH does NOT get the idea of keeping crumbs out of the butter dish, he thinks it's "overkill". I don't even know yet if I have the disease, or just gluten sensitivity. I do know the long-term consequences can be serious, and with two cases of multiple myeloma in my family, my own Hashimoto's, and other issues associated with gluten, I KNOW I need to be off of it.

small percentage????

Let's do some math.

The world's population is approx. 7 billion people as of today.

1% is 70 million.

The current population of the US is approx. 313 million people.

1% is 3.1 million people.

Your husband thinks 3.1 million people is a "small group of people"? Invite this 3.1 million over for a BBQ and see how small this group is.

Want to feel "special"?

Your DQ2.2 accounts for 1% of the KNOWN celiac population.

"In at least 1% of coeliacs, DQ2.2 confers adaptive immunity to gliadin permitting coeliac disease."

The Journal of Immunology, 2005, 175: 254-261.

However, they still do not know how many UN-DXed celiacs may have this haplotype, so that number may change. (BTW, I am one of them)

It does not mean we AREN'T a part of this VERY large group of people with celiac disease. (It just means we're "rare" and I like to say "extra- special" )

Thanks for cranking out all the numbers. I love the "extra special" label, LOL! I feel SO special that I might be part of the "1% of the 1%". My mom has that with her multiple myeloma; it is also in 1% of population, and the type that she has (kappa IgM) occurs in 1% of myeloma cases. Wow. Ain't it great.

It is wonderful that attention to celiac is increasing greatly, and as awareness grows we will get a better picture of all the different presentations of it as well as degrees of severity.

I'm DQ2.2 too. We're not looking quite so rare after all? With positive blood tests I wouldn't touch gluten with a 10 foot pole!

I like the way IrishHeart worked out the numbers. Kind of gives a better perspective?

My hubby doesn't understand it either, but he's seen my reactions to gluten and knows it's real. That being said though, on our recent trip to Mayo he kept saying he thought they'd find something else wrong, that they could just give me a magic pill for and I could go back to being "normal".

I am glad your husband is able to understand the reality, at least. He sounds like he will be very supportive once you get everything clarified as to what's going on with you!

[beachbirdie]

I hope *you* don't think being gluten free is a "radical lifestyle change". It doesn't need to be...If you need to go gluten free in silence. You know you have to do so just do it.

BTW I believe the DH (dermatitis herpetiformis the skin form of celiac) is extremely under-diagnosed. I think DH is about 10-20 percent of diagnosed celiacs so that would make DH .1 - .2 of 1%. I'm no expert but in my very public job in my area I would suggest to it is more like 10% of the general population have various severity (mostly mild) of DH.

For me gluten free is not radical. The time we spent exploring SCD (Open Original Shared Link) was radical! Going totally grain-free was quite a learning experience that makes gluten free look EASY! I still do a lot of SCD because my daughter-in-law needs it due to HER intestinal issues (recovering from near-death c. diff infection).

Interesting to hear your observations regarding DH. I understand from reading here that many people who seek medical attention for it get misdiagnosed because docs don't know how to do the biopsy. How many more have the rash, but because it doesn't look "textbook" docs are dismissive, or they call it "contact dermatitis" and send patients away with creams that don't work. That's what happened to my son. Cortisone, waterless cleaners, all kinds of things.

Sometimes it takes a doctor to tell your husband it is serious. I had that with some post pardum depression (my grandfather died 3 hours after my baby was born) My husband didn't grasp the severity of it. The doctor had to look him in the face and say "Just like you have diabetes, she has THIS." End of story. He totally got it. I guess it takes a Medical Degree for some men! BUT...have you had the EMA (endomysial antibody test) It is like 99% accurate. One lab didn't even offer that but the other did. That is what convinced my husband that our daughter had it. Yes, she had the genes but so do we. We are both carriers of DQ2 and do not have it. Our other daughter doesn't have the EMA so he doesnt' think she has it. (retesting next month) But...if you could have the EMA test and it show positive, then maybe he'd believe you without the expense of a biospy.

Getting my husband to see the seriousness is one reason I'm possibly pursuing a diagnosis, the other reason is my mom. I've been blown off by her doctors for two years and decided to take her gluten-free just to see if it helps her myeloma numbers.

I was negative for EMA antibodies, that is what makes my testing confusing. My antibodies can also be raised by my autoimmune thyroid, so I'm seeing the doctor tomorrow to see if we can iron it out. Crohn's can elevate the TtG IgG, I already had that ruled out by GI doc a couple of years ago; the other two things it could be are cirrhosis (non-alcoholic-also known as "fatty liver disease") and Type 1 Diabetes. I know I don't have diabetes, so it narrows me down to liver or thyroid if it's not celiac.

If my doc suggests biopsy, I'm thinking I'll go for it at this point.

[Juliebove]

I'm a diabetic and I wish we could just brush off sugar once in a while. Actually sure isn't a problem for us. It's total carbs. Yes, sugar is a carb. We eat too many carbs, no matter the source and we have high blood sugar. People don't understand that either!

[Bwarning3]

My husband was eating pizza today and asked me if I wanted a pepperoni from his pizza. I told him "no" of course and then told him that instead of trying to get me to eat things I shouldn't he should be telling me not eat them. I asked him if he wanted me to feel awful all the time? He has always had a problem if I need attention for something and if I am feeling bad its something that is affecting his comfort. He'll get over it eventually and realize how serious it is but until then I will keep plugging along trying make my life as gluten free as possible and hope that someday he learns not to dip his wheat crackers in my gluten free hummus.

[~**caselynn**~]

My family and I have been on a two-year journey of discovery regarding possible wheat sensitivity. I've posted before about my son who seemed like he might have dermatitis herpetiformis, and had many digestive problems (including terrible heartburn) that all resolved on a gluten-free diet. I also talked about:

My middle daughter has terrible digestive issues with wheat, and feels better off of it, though she tested negative on all the celiac tests.

My oldest daughter had a lot of discomfort and bloating, as well as a rash on her arms, until she gave up wheat.

My mom, who has monoclonal gammopathy (precursor to multiple myeloma), chronic canker sores, edema and abdominal bloat, neurological issues (micro-seizures), short term memory loss, sleep apnea, strange cataracts that appeared in the last three years, insomnia, among other things. EDITED TO ADD: Oh yeah, the anemia, hypoparathyroid, and vitamin D deficiencies, as well as the protein deficiency!

I tested positive for a low-risk celiac gene (am DQ 2.2) and have Hashimoto's thyroiditis. I also tested positive for the ttg igg antibodies. I've been glutening, while waiting to see if my doc thinks a biopsy is in my future. Don't know if I should expect or go through with that or not.

Thing is, my husband just doesn't understand this issue, as much as I've tried to tell him. He doesn't understand that the need to avoid gluten is not just a fad, and it is not something that can be brushed aside once in a while like sugar for a diabetic. He doesn't want the radical life-style changes that come with a celiac diet, and he has said he thinks ALL our gluten-free foods have been horrible.

I'm beyond frustrated with him. He saw a show on the morning news in which he heard a Dr. Green (I'm guessing it was Peter Green) talk about how celiac only affects 1% of the population, and said to me "what makes you think you are part of such a small group?"

ARRGGGGHHHH!

My mom has a condition that affects 1% of population, and her particular type affects only 1% of those that have the disease.

Yeah, I could be part of the 1%.

I just want to scream!

End or rant, thanks for listening!

Well he certainly is stubborn, huh? Lol gluten free is NOT a radical lifestyle, in fact it doesn't even have to be a touch transition of you're willing to make it, that's where the difficulty lies. This reminds me of when I first went gluten-free, my family besides my mom were totally against it. I didn't live with them so it didn't matter to me, except for fily meals. My mom and I decided that we were going to make a few meals gluten-free and feed tO my dad and brother a few times in a row and see if they could tell the difference. These are meals we would normally have such as lasagna, stir fry, pasta dishes. The boys ate it right up and loved each one, especially my chicken lasagna, gluten-free of course....neither caught on that I was eating it too, therefore it must be gluten-free hehe I told them while they were eating the lasagna, mind you while my brother was on piece #2 hahaha his mouth dropped open, and he said " this gluten-free crap ain't so bad" haha my family no longer has a problem eating gluten-free, in fact my brother prefers gluten-free pizza!!! So moral of the story, just make the food, he'll eat it and he won't know, as long as you don't make something off the wall. Stick to swapping the basic meals to gluten-free. Good luck!!

[1desperateladysaved]

Oh, I fit right in here. I asked my husband if he wanted me to die. He did not.

I hope you all get the loving support which we need. Our husbands are not unloving so much as not understanding.

Gluten intolerance wasn't even on the back side of our marriage agreement even in small print. It was a surprise that came with the package deal! None of us or them were volunteers in this gluten adventure. Right? Nevertheless, here we are.

Diana

[~**caselynn**~]

Oh, I fit right in here. I asked my husband if he wanted me to die. He did not.

I hope you all get the loving support which we need. Our husbands are not unloving so much as not understanding.

Gluten intolerance wasn't even on the back side of our marriage agreement even in small print. It was a surprise that came with the package deal! None of us or them were volunteers in this gluten adventure. Right? Nevertheless, here we are.

Diana

[/quote

I know I certainly didn't volunteer lol and neither did you, but it will all work out with time. Good luck!! ?

[1desperateladysaved]

My husband was eating pizza today and asked me if I wanted a pepperoni from his pizza. I told him "no" of course and then told him that instead of trying to get me to eat things I shouldn't he should be telling me not eat them. I asked him if he wanted me to feel awful all the time? He has always had a problem if I need attention for something and if I am feeling bad its something that is affecting his comfort. He'll get over it eventually and realize how serious it is but until then I will keep plugging along trying make my life as gluten free as possible and hope that someday he learns not to dip his wheat crackers in my gluten free hummus.

Hey, has anyone out there solved this problem ever? Here is me again. How does one cope? How can we husband and wife win? I just want to live in peace and without gluten.

[Making-A-Change]

Hi everyone! The first thing I would like to say is....I understand that this is a condition that needs to be taken seriously....by everyone!

I'm new to this whole thing about gluten....I have been really sick for six years, but no one could ever diagnose me or help me. I have had shingles 5 or 6 times since last year, and severe yeast infections for 6 years. Now, for the last year or so I have had severe fatigue among several other symptoms. For the past 6 years, no doctor has found out what is wrong with me. My current doctor told me to take a probiotic and that should fix me. Didnt do anything for me. She told me to try a different one. Nothing. I told her I wanted a blood test to see if I was difficient in anything....I was. Vitamin D was low and my IGE level was high. She gives me a vitamin D to take once a week and told me my IGE level was allergies. Well, I do have allergies but I am not convinced! I found a website that said my frequent infections and other symptoms were candida yeast overgrowth, and I asked my doctor about this. She didnt really know much about it but that is when she told me to take the probiotic. I started eating the way the website said to avoiding almost everything lol, and I started feeling a little better. Then I stumbled upon the website that talked about gluten intolerance and celiac disease and I found myself fitting that as well. That makes more sense to me than candida. So I started a little test of my own and stopped eating glutens then started eating them again to see how I reacted to them. I got ill everytime. I have suffered from gas and bloating for many years to the point where I couldnt be around people much due to fear of passing gas (which I could not help). So, I spent the last 6 years not going to many church fellowship meetings and this has upset my husband and myself desperately!! I asked my doctor is there was a chance that I had gluten intolerance or at the worst celiac disease and she said that it was very possible. But.....she told me to stop eating glutens and if I felt better than I had my answer. Period. Nothing else. From what I read celiac disease is serious business! It is not a matter of just not eating it today, but maybe eat it tomorrow or nibble at a party or like some of you have said, not putting your chip or cracker in my gluten free food. It does matter! So....I asked her to do a blood test. I took it today. Had to eat glutens all week though and I feel horrible! I have shingles again, and a bad cold which I caught from my husband, missed two days of work, two services of church, and dont know if I should eat anymore glutens until I find out what my next step is. What worries me is if something does show up in my blood test, will my doctor just blow it off and say dont eat glutens? I totally understand what you are all saying! People dont get it. Why? Because it is not a well know disease? I never heard of it before now. But this could very well be what is wrong with me, but my husband doesnt want to hear the words gluten free. He feels like it is going to be a hassle. Well it might be. but my health is worth something right? He keeps saying that its probably something else causing my sickness. Well....I AM self diagnosed right now. Mainly because I cant get anyone else to find out whats wrong with me. Until its ruled out then I believe it is glutens that is making me sick. Any thoughts? (Sorry to ramble on).

[IrishHeart]

Hey, has anyone out there solved this problem ever? Here is me again. How does one cope? How can we husband and wife win? I just want to live in peace and without gluten.

Make your home gluten free. Serve everyone the same delicious wholesome foods that you eat. Tell "them take it or leave it"?

My husband went gluten-free with me (I did not ask) after he saw how easily cross-contamination can occur and how deathly ill celiac made me.

He chose to put my health first over everything else.

He learned how to read labels and he helped me replace what needed replacing in the house.

He does not feel deprived of anything, believe me; I feed him like a king.

The main thing is, he is no longer deprived of his wife! --because I am recovering and no longer dying --as he watched me, helplessly, dwindle down for years.

Until your spouses, family members (and friends, too) get it through their heads that gluten is poison and will kill you, I do not know how how supportive they will be. Have any of them READ anything about this disease so they understand it?

Can spouses live together--one gluten-free and the other not? SURE!!

Lots of members on here co-exist just fine with gluten eaters.

But it takes COOPERATION on the part of all family members--are they willing to learn how to keep the celiac safe? Do they keep their gluten foods separate? do they accept and understand that Mom (or Dad) need support and understanding--not mocking, ridicule or teasing?

Put your foot down. This is your own life you are saving. You have a potentially life-threatening disease and without these safety measures in place, you will not really get well. You will keep feeling lousy and putting up with the stress their non-cooperation and criticism causes you.

Without their cooperation, you guys will continue to butt heads with your family members--for the rest of your lives. Who needs that?

Just my two cents. Feel free to ignore.

Best wishes.

[kareng]

I live with gluten eaters. I think the key to that is:

1. They must "buy into" the Celiac diagnosis:

Both my boys had friends with Celiac (I didn't know this at the time) so they had an idea that it was real. They and my hub wanted to make me well

2. Old enough to be responsible for thier own food:

My boys were 13 and 16 and were already responsible for thier own food sometimes. They had both cooked so they had some idea of what is in food.

3. Procedures that are very easy to follow without a lot of thought

We have a separate counter with a cabinet to fix gluten toast and sandwiches and pretzels and Cheezits. Its easy to do. The bread is there, the toaster is there, the gluten PB is there. It is easy and takes no thought to make the sandwich there.

If its red, its gluten free. I have red cooking spoons, etc and red tape for the lid of my PB.

4. Its OK to make a mistake if you fix it:

If you forget to get the cheese out before you get the bread or crackers out, put the left-over cheese in a baggie and label it with your name. I will not be mad, even if I really wanted some. It has to be safe to admit you messed up.

[IrishHeart]

I am so glad you saw this and posted, K (I was just going to PM you and ask if you'd pipe in (you must be psychotic psychic)---because when I said:

"Lots of members on here co-exist just fine with gluten eaters"

you are one of the ones I was talking about.

[DavinaRN]

I so understand, I will be going glutten free silently if my blood work is negative (I can tell a difference just going gluten free one meal). I want to feel better! The lung surgery was suppose to make me normal again, although most can't see the exhaustion even the hubby but my son can. His view is he would worry if I felt good. As to the percentages, lets see lung malformations make up 2% of birth defects and my type makes up 1% of that 2%. Better safe bets the odds are not with me.