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TEaglefeather

Hello

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I am looking for people to help me & him to live a better and happier life. He was diagnosed 3 years ago with it, and it is so hard to find what he is suppose to eat and what not to eat. The doctor he had which found he had it no longer lives here and we cannot fine a doctor that he is comfortable with, ( he is not a easy patient) ;)

But he suffers so badly, we both are on social security now I have one cancer, and he with the celiac great pair huh :D ....So here I am reaching out to the net. We have a store here that sells gluten free foods but lordy are they so expensive....

Could someone either tell me the foods he can eat or point me in the right direction?

Because all the doctors say is gluten free, well we don't totally understand that, I have been told wheat or rye bread is ok but white is not & then I read wheat is not good, and he loves his bread majorly, I would even make homemade bread if I could find the right way to make it.

Also he gets so very constipated sometimes not going for a week or more, and he has taken everything prescription form and prune juice and phillips you name it and he still has a horrible time, we grow very large veggie garden's and he gets plenty of greens, and of course the doc tells him it is part of the celiac. Does anyone know anything to help him with this also, because when he does go he bleeds so badly and he doesn't always tell me when he does bleed because he does not want me to worry but after 20 yrs of marriage a wife just knows ......

And oh how big his stomach gets like a round basketball and so hard, he is on pain meds but they do not help as they should they take the ease off but still do not help. We go this coming 15 to the doc's so if there is any info or anything I can tell the doc to give him for the celiac or just anything please let me know, I love him and hate to see him suffering so much and dieing like this is horrible...

Thank You

Blessings To All & Everyone Who Is Going Through This Terrible Disease

Terry Eaglefeather

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Hello,

It sound like he is still ingesting gluten and still experiencing symptoms. Some of us are very sensitive and it takes very very little. We have to treat it as we would an allergy that requires an epi-pen. Wheat, barley, rye and oats(due to cross-contamination) are to be strictly avoided, as well as all related grains and ngredients made from these grains.

Here is a link to lists of safe and unsafe ingredients. As with all info., it may seem overwhelming at first but you'll soon figure it out.

http://www.celiac.com/categories/Safe-Glut...3B-Ingredients/

It is best to stick with simple, fresh ingredients at first and add in processed ingredients as we learn our way around label reading. You have a great resource in your garden!

Wheat is required by law to be listed on the labels. Barley and ingedients made from it are not so we need to learn what those may be. They are on the unsafe lists linked to above. Don't be afraid to call manufacturers or e-mail them and ask if thigs are gluten-free. Many are preared to give us useful info., a few aren't. Check websites under FAQ's or Contact Us or Nutritional Information.

My DH is calling me for dinner, so I have to go for now. I'll check back later and see if I can help with some other areas of concern/importance.

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Teaglefeather,

I am sorry you and your husband have so many problems. Coming to this site will be a great help to you. Everyone here will help if you ask.

First of all, anything, I mean anything that is made with wheat, barley, oats, and rye is a no no. The white bread also has wheat in it. The dr is wrong on that. And yes, dr's can be wrong. There is a list on this website that gives you the good foods and the bad foods. So that will help you a lot.

I'm sorry I can't give you more at the moment as I am running late for an appointment. But keep reading this website. You will learn a lot.

Sending you lots of hugs.

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Thank you both so very much, I have been reading through the site and I am just so amazed at all the info I am finding out & learning, I have him looking over my shoulder listing to me read all of it. I have posted questions on a couple of the different boards under the categories....

I thank God for bringing me here to this site, because I do not want to see him suffer anymore....I am going now to look at all the safe foods.....

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You will need to check all his meds. to be sure if they are gluten-free. On meds. we can't look at the labels. We have to call the manufacturer. Sometimes pharmacies are knowledgeable and helpful, sometimes not. I have to call myself, my pharmacy doesn't understand. I always ask the doctor for the generic and brand name, that way if I can't verify one, maybe I'll have better luck with the other. The pharmacy can sometimes provide me with the phone # and let me use their phone to call. Sometimes I have to look it up online. Here is a drug list but it may/may not be up to date. They may help with contact info.

http://homepage.mac.com/sholland/celiac/GFmedlist.pdf

http://www.glutenfreedrugs.com/

There are also lists of manufactureres that help us out with the labels and voluntarily disclose barley and ingredients derived from it. Many of these have alot of brand names and products under their umbrella so if you can learn just one it can be a big help. Here are some resources.

http://www.glutenfreeinsd.com/manufacturers_statements2.html

http://www.glutenfreeindy.com/foodlists/index.htm

There are other issues to address as well-eating out, cross-contamination and others but hopefully these things will help get you started on a better path.

Baking bread is definitely doable. The method and flours are different though. If you have an asian market nearby or a regular grocery that caters to an international crowd with an international section, you can pick up some of the flours that we need for cents per bag. ValuMarket sells tapioca starch and rice flour that I buy. There are many ways to re-make old favories and everyday dishes to gluten-free. Rice Chex brand cereal(by General Mills) is gluten-free and can be processed in a blender for bread crumbs to use in meatballs and meatloaf.

Keep posting away with any questions.

Best wishes to you. I'm sorry that your DH has been feeling so poorly and hope he will be feeling much better very soon.

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Great advise from everyone!

I just wanted to welcome TEagleFeather. This is a wonderful place you have found. With a little bit of knowledge, your husband will soon be on the road to recovery.

Feel free to ask anything.

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Hi Terry,

Earlier in my other post I meant to say that oats have a problem with cross contamination. Meaning that a lot of companies process their oats in a wheat facility resulting in them being contaminated.

Also, your husband may be getting cross contaminated in your kitchen. If you are planning to keep eating gluten breads and he eats gluten free breads he will need a new toaster, he will need a new collander, utensils and if you have teflon pans with scratches in them, you will need to replace those with new ones.

Now, your butter, mayo, peanut butter, etc. If there are any bread crumbs in these, they are contaminated. Also, if you continue to eat gluten, you will need to brush your teeth after you eat before any kissing because that will gluten him also. and no, I'm not kidding.

Check all shampoos, lotions, soaps, etc, as some of these have gluten. Also, your lipstick or gloss, you need to check for gluten also because, again, contamination to him.

Also, I wouldn't be a bit surprised if he has other food sensitivities as well.

Anyway, I hope this helps, I am sure you will get a lot more info from others as well. Hang in there, he will get better now that you are here.

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Hi Terry,

Earlier in my other post I meant to say that oats have a problem with cross contamination. Meaning that a lot of companies process their oats in a wheat facility resulting in them being contaminated.

Also, your husband may be getting cross contaminated in your kitchen. If you are planning to keep eating gluten breads and he eats gluten free breads he will need a new toaster, he will need a new collander, utensils and if you have teflon pans with scratches in them, you will need to replace those with new ones.

Now, your butter, mayo, peanut butter, etc. If there are any bread crumbs in these, they are contaminated. Also, if you continue to eat gluten, you will need to brush your teeth after you eat before any kissing because that will gluten him also. and no, I'm not kidding.

Check all shampoos, lotions, soaps, etc, as some of these have gluten. Also, your lipstick or gloss, you need to check for gluten also because, again, contamination to him.

Also, I wouldn't be a bit surprised if he has other food sensitivities as well.

Anyway, I hope this helps, I am sure you will get a lot more info from others as well. Hang in there, he will get better now that you are here.

WOW I had no idea about any of this you have just told me...Oh I am so thankful...I am learning so much, even my husband is so amazed also about all this I am telling him.

He wants to ask the doctor Tuesday why has he never told him any of this...

Again Thank You

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Great advise from everyone!

I just wanted to welcome TEagleFeather. This is a wonderful place you have found. With a little bit of knowledge, your husband will soon be on the road to recovery.

Feel free to ask anything.

Thank you so much I have learned more here in the last half an hour then I have learned from the doctor in the last couple of years...LOL

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pain meds, especially ones with morphine or codeine in them, are notorious for constipation. make sure they aren't making the problem worse. Keep on with the prune juice and gluten free fiber sources like rice or flax--they're often better than medical laxatives.

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Hello and welcome to this forum. My daughter was ten (she is now 13) when we found out that she had Celiac her doctor told me to come to this site and read. Three years later I am still reading and usually learn something new ever time. Some things to watch out for is charcoal, chap stick, mouth wash, toothpaste, sheetrock mud, communion wafers wheat is in alot of stuff that we usually do not think about. Keep reading all labels and you will get the hang of the diet. They make special beers if he wants one. Good luck to your husband and also take care of your self.

PS You might want to get new pots and pans and serving utinseld and cutting boards.

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