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Getting Family On Board With Gluten Free Diet


rayandme

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rayandme Newbie

I was recently diagnosed with Celiac disease. I stupidly ignored the symptoms I was having for nearly 5 years. Now my intestines are so damaged and irritated, I have a long road of recovery ahead of me. My dietician told me that for at least 6 months I must follow a SUPER strict gluten free diet. She told me something I didn't think about. That if I make my son a pb and j sandwich and then put that knife back in the peanut butter jar after it touches the bread, I can't eat the peanut butter in that jar because it is now contaminated. I can't use the jelly either....I NEVER thought I would have to restrict myself that much. But because I have so much damage and what not I need to be super strict so my intestines can heal well and we can determine what my sensitivity is. My problem is this: My husband continually says (when I am having a moment of weakness) "oh it's ok, a little bit won't hurt." Or he says, well it doesn't say it has wheat or whatever in it, it should be ok, just eat it anyway."

He doesn't understand that even a TINY amount of gluten will be irritating to my intestines right now. How do I get him to understand that I need his support and it doesn't help me stay on the wagon if he constantly tells me it's ok to cheat?


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greeneyes33 Newbie

I was recently diagnosed with Celiac disease. I stupidly ignored the symptoms I was having for nearly 5 years. Now my intestines are so damaged and irritated, I have a long road of recovery ahead of me. My dietician told me that for at least 6 months I must follow a SUPER strict gluten free diet. She told me something I didn't think about. That if I make my son a pb and j sandwich and then put that knife back in the peanut butter jar after it touches the bread, I can't eat the peanut butter in that jar because it is now contaminated. I can't use the jelly either....I NEVER thought I would have to restrict myself that much. But because I have so much damage and what not I need to be super strict so my intestines can heal well and we can determine what my sensitivity is. My problem is this: My husband continually says (when I am having a moment of weakness) "oh it's ok, a little bit won't hurt." Or he says, well it doesn't say it has wheat or whatever in it, it should be ok, just eat it anyway."

He doesn't understand that even a TINY amount of gluten will be irritating to my intestines right now. How do I get him to understand that I need his support and it doesn't help me stay on the wagon if he constantly tells me it's ok to cheat?

I'm sorry about your husband not understanding, its hard to grasp everything in the beginning.

Unfortunately, if you have Celiac disease you will need to be that careful for the rest of your life. Get your own pb jar, your own mayo jar, anything like that that can become contaminated.

Tell him that its not about cheating, you are damaging your body which can lead to other problems such as stomach cancer, lymphoma etc....And yes, just a tiny amount will cause damage even once you are healed. It stinks, but it is what it is.

Find as many articles, web sites,(this one is awesome) books etc and make him understand. My family is just starting to get it. They've seen me doubled over in pain from cross contamination. They remember me laying in bed crying because I was in so much pain. They dont want to see me like that anymore, and they know that the only way for that not to happen is to be as strict as possible.

Good luck to you, I totally understand. Its so confusing, frustrating and upsetting. It takes time, Just accept it and embrace it. Its the only way I've found to cope.

theclutterhouse Newbie

Hello RayandMe,

I will tell you first of all this takes every bit of support and help you can get from anyone and everyone. I need to ask you a VERY important question. Has your children been tested for Celiac's? If you have it, it could be passed onto them. It's extremely important that they are tested immediately so that if they do have it you can start them on the diet and start the healing.

As for your husband. I have to say I'm not in that situation as my husband is great about this. We are a family of 5. Myself and 2 of my children have the disease. We ALL eat Gluten free in the house except for the bread my husband and son use for lunches and their cereal. These items are kept away from our food. We are Gluten free in the house for our safety. My husband and son actually like it much better. Gluten isn't healthy for anyone even if you don't have Celiac's. He needs to research this himself. He needs to know that this disease and/or the complications from it could potentially kill you. This is not an allergy where you can take benedryl and be fine, or have a stomach ache for a day and be ok. The disease slowly but surely does severe damage. My son is literally fighting for his life right now. He's 13 and has been bed ridden since Oct 08. I spent all night with him in my arms trying to comfort him while he was crying because of the pain and a list of other symptoms. This disease has destroyed his small intestines and now we just found out has started on his thyroid. Please, this is not a small matter. This is litterally life and death.

I see that you mentioned the peanut butter and jelly issues. This is what we do. I have a seperate peanutbutter, jelly, butter, mayo, mustard, ketchup etc, for them. They are in there own spot in the frige as well. It's very important that you don't have any cross contamination. Also, you need to have your own toaster, can opener, pasta strainer as well. If you cook with pans that have the nonstick, stop immediately. The gluten can get trapped and again you will be contaminated. I went to stainless steel pots and pans along with silverware. I put the gluten free silverware in a plastic container with a lid on at ALL times so no crumbs etc. can get on them. Do you have any flour in your house that is not gluten free? These particles stay airborn for hours. This will make you sick as well. Anything that is not gluten free that you would bake with that is in powder form is very dangerous for you. You really need to get rid of it and switch to gluten-free. Remember even if doesn't have gluten in it, it could be processed and packaged in a facility that has it in it. Please let me know how far you gone gluten-free. I'm going to list some things that you may not even think of that will help you:Remember these need to be gluten-free!!!!!

- tissues with lotion in them

- toothpaste

- lotions

- any product you use for acne etc.

- soaps

- shampoos & conditions

- detergeants

- dog food

- bandaids

- licking envelopes (very bad)

- hand sanitizer

- tape

- art supplies

- any food product, including seasonings, butter, oils etc.

- medications prescribed and over the counter. *you need to contact your pharmacist and put it on your record immediately that you have celiac's so that all meds prescribed are checked prior to you receiving them

- baby wipes

- vitamins

- peanuts (most are packaged in plants that contain wheat)

- no oatmeal (some say ok and some say no)

I hope this helps. Please let me know how things are going and I hope your husband comes around. I wish you well,

theclutterhouse

ravenwoodglass Mentor

Bring him here and let him read as many posts as he will, that will be a start.

What may help to is after he sees you are feeling better and then sees the violent recurrance of symptoms when you get glutened.

Many folks make the big step of making the household pretty much gluten free. They restrict the bread and gluten products to a certain area only. Almost anything that is made with gluten can be made without and many meals are by nature gluten free like chili and stews thickened with potato flour or cornstarch.

I do hope you can get him on board soon. Your quality of life depends on it.

ang1e0251 Contributor

Are you going back to the dietician? He should make a visit with you there or to your dr. Privately let them know his misunderstanding of your condition and they will explain to him & make him understand. You're not being picky; you are fighting for your life.

It is a great idea for him to check out this forum. Let him go the section for friends and relatives of celiacs. He can pose his question - A Little won't Hurt My Wife, Right? -. I think the responses will tell him what he needs to know.

one more mile Contributor

Just tell him that when you get hit by a train it is not the caboose that kills you.

Wheat just happens to run like a train though you.

This is my illness not anyone else's. in moments of weakness I have to think the bite though. Is eating this worth the trip to the bathroom, the brain fog, tiredness and the body pains?

If I hunger for something can I possibly find a gluten free recipe of it online?

Sorry, I do feel for you. Sometimes getting our family on board is very hard. I am lucky that the person that lives with me has seen such a difference that keeps his food clear of mine.

We have separate toasters and separate tubs of butter. I take a sharpie marker and make a big NG on the lid. He can put all the crumbs he wants in the non marked tub. I found it is eaiser to have two tubs then to get annoyed at him.

I put mine in the back of the fridge so he does not accidentally grab it.

One more mile

Mother of Jibril Enthusiast

I'm finding that my husband is actually pretty supportive... but sometimes it takes a while for the information to sink in. We had a discussion this week about how I can't eat the peanut butter if he puts some on his gluteny bread and then dips the knife back into the container. At first he made a skeptical noise and said, "Oh that little bit isn't going to hurt." I said, "Oh yes it is... now I need to buy some new peanut butter for myself." The next day he told me that he scraped the top of the container to get rid of the crumbs... which didn't really solve the problem, but at least he thought about what I told him and tried to fix it ;)

It takes time to develop the appropriate level of paranoia when you're not the one suffering from every tiny little trace of gluten... but most people can change if you give them a chance :)


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Takala Enthusiast

Our house is almost gluten- free except for a few boxes of cereal which are wheat- free if not technically gluten free, which my husband eats. Since it is just the two of us, he made the switch even though he didn't have to, because it was easier to cook and shop that way- he eats lunches and some business dinners out, and says he gets plenty of the "other kind" of food that way.

His eating habits were always much healthier than the average guy's, so this was not that big a transition for him. We were eating meat and salads a lot for dinner anyway, and eat a lot of fruit. Rice pasta is good. We both love Mexican food, which means corn tortillas are a staple. We live way too far out from a pizza place to deliver to anyway, so I was used to making that if I wanted it. I make killer gluten-free pancakes on weekends, and bake some bread during the week.

He has seen me get knocked down by auto immune arthritis, kidney issues, and having severe balance/neuro issues, to going to a person who isn't sick all the time, so there is an obvious benefit to be seen to having us eat this way. I can be a lot more active, I have a life. He's also seen me wipe out in exhaustion from accidental cross contamination, and I'm not as reactive as most people.

cmom Contributor

My husband is very supportive and good about trying to explain my deal to others (sometimes to the point where I'm sure they've heard enough). Sometimes, though, he does get a little annoyed like if I say, "I can't eat that potato b/c your bread was touching it," or something to that effect. I think it's just b/c it wears him down just like it does those of us who have to be constantly vigilant. :)

pookie91260 Rookie

have him read up on it. i emailed my family several articles I found online to help them understand. the gluten free bible is an excellent book. I am in the same shape you are. not only can you not use contaminated products, you have to be sure your toaster and microwave are clean as well. hang in there-it gets better.

psawyer Proficient
[Y]ou have to be sure your toaster and microwave are clean as well.

Cleaning a toaster of gluten is next to impossible. Buy a new one, and use it exclusively for gluten-free products.

Tallforagirl Rookie
I'm going to list some things that you may not even think of that will help you:Remember these need to be gluten-free!!!!!

- tissues with lotion in them

- toothpaste

- lotions

- any product you use for acne etc.

- soaps

- shampoos & conditions

- detergeants

- dog food

- bandaids

- licking envelopes (very bad)

- hand sanitizer

- tape

- art supplies

- any food product, including seasonings, butter, oils etc.

- medications prescribed and over the counter. *you need to contact your pharmacist and put it on your record immediately that you have celiac's so that all meds prescribed are checked prior to you receiving them

- baby wipes

- vitamins

- peanuts (most are packaged in plants that contain wheat)

- no oatmeal (some say ok and some say no)

Personally (and backed by expert advice I have read), I think you only need to worry about the things you are going to ingest. IMO this does not include:

- tape

- art supplies

- bandaids

- lotions

- any product you use for acne etc.

- soaps

- shampoos & conditioners

- detergents

- dog food

- tissues with lotion in them

- hand sanitiser

Some people on this forum find they react topically to these things, but I believe (again backed by expert opinion) that this is more likely an allergic reaction to one of the ingredients (maybe to the gluten, but I don't know how you could tell exactly which ingredient it was that you reacted to).

If you're going to worry about gluten getting on your hands because you may then touch your mouth and ingest it, then you'd have to worry about everything you touch, especially in public, as you never know when someone may have touched something after having gluten on their hands.

Mother of Jibril Enthusiast
- tape

- art supplies

- bandaids

- lotions

- any product you use for acne etc.

- soaps

- shampoos & conditioners

- detergents

- dog food

- tissues with lotion in them

- hand sanitiser

Another perspective on some of these things... if you have any cuts or open sores, I would be careful about applying products with gluten (bandaids, lotion, acne medications, etc...), especially if you're really sensitive. Some people have no problem, some people do.

You also need to be careful if you have little kids who are sensitive to gluten. My son is still at that stage where he puts EVERYTHING in his mouth :o I still have one bottle of shampoo containing gluten and I was going to use it on his hair the other day... then I realized that he often gets bath water in his mouth. <_< IMO, it's just not worth the risk. We had a thread a few days ago about toddlers eating dog food... and definitely, kids eat art supplies like play-doh. We couldn't leave my daughter alone with the play-doh because she would eat it like a dinner roll.

Only time will tell how paranoid you need to be ;)

home-based-mom Contributor
If you're going to worry about gluten getting on your hands because you may then touch your mouth and ingest it, then you'd have to worry about everything you touch, especially in public, as you never know when someone may have touched something after having gluten on their hands.

Exactly. So you wash your hands a lot, especially after being out in public. Assume absolutely everything is contaminated and protect yourself accordingly.

pookie91260 Rookie

Yes! it is a huge pain to clean it all the time.

Tallforagirl Rookie
We had a thread a few days ago about toddlers eating dog food... and definitely, kids eat art supplies like play-doh. We couldn't leave my daughter alone with the play-doh because she would eat it like a dinner roll.

If the thread had been about small children with celiac disease, yes, I'd agree there are extra things to worry about that they may put in their mouth, but but we're talking about a grown woman here. I don't think she's gonna eat dogfood or art supplies.

If you're not going to ingest it, and you don't have a topical reaction to it on your skin, then why worry about it?

pookie91260 Rookie
If the thread had been about small children with celiac disease, yes, I'd agree there's more you need to worry about that they may put in their mouth, but but we're talking about a grown woman here. I don't think she's gonna eat dogfood or art supplies.

If you're not going to ingest it, you don't need to worry about it.

unless you eat without washing your hands. In that case you definitley need to worry

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