Need Help Still Very Confused!

[dad]

Hi! I have posted here once before and it was suggested that I start a new post for some help instead of tacking on to the end of an exisitng thread. Well I'm here to try to find out as much as I can about this disease as I can, so I can get started trying to deal with it. This all started on October 21, 2005 when I recieved a phone call from my wife who told me my 6 year old daughter was just diagnosed with this disease through a blood test she was given. I understand that she is more likely to get this due to the fact she is also a Type 1 Diabetic. My problem is I still dont really understand the whole disease. I do understand that it has something to do with wheat and things made with wheat but that is about the extent of my knowledge. What confuses me is some of things I've read that if you put your food in a pan that previously had food in it that contained gluten that the gluten free food that you cook in that pan afterwards would be contaminated. Now this is where I become confused is gluten some type of micro-organism that can move around and is not killed from heat or washed away with soap and water??? I thought it was just a product that contained some type of wheat ingredient. Like I said I'm completely new to the whole thing and have yet to speak with a Doctor which I will do on November 2, I'm just trying to educate myself and my wife so we can kind of get a head start on this whole thing. We plan on what ever diet change we have to make will probably be made by the entire family whether it is needed or not. We dont think it would be fair to her if we ate all the stuff that she could not right in front of her. We also decided once we do confirm that she has this disease that both of us and our 2 other children will be tested for it as well. Speaking of which is there any recomendations of Doctors in the Michigan Tri-County Area that anybody might be aware of???? What other things do we have to be aware of I read mention of soap and make-up just to name a few. Will we be able to eat out again? If it is confirmed that she has it will it be more likely that any children she has will also have this disease?? I would appreciate any help or advice that can be provided and would like to thank those who have already responded. Thank you! Take Care and Stay Safe

[lovegrov]

If you have celiac you have to avoid not just wheat (all varieties, including spelt), but also barley, rye and oats (oats are all contaminated with wheat in the U.S.).

The "gluten" that harms us is a protein and is not actually alive, so, no, you can't kill it. Baking bread at 350 degrees or deep frying something at 375 doesn't get rid of it, which is why we can't have bread or breaded, deep-fried food. We also can't have food that doesn't have gluten but is fried in the same oil as something that does have gluten. At some high temperature the protein is indeed destroyed, but so is the food.

Gluten can be washed away with soap and water but you must be very thorough. Scratched non-stick pans allow particles to lodge and so can be contaminated. Wood is also bad for this. Old wooden utensils should be discarded, as should wooden cutting boards (although you could probably sand them down).

Keep asking questions. And don't be surprised if your doctor doesn't know the answer or has old info.

richard

[Jnkmnky]

Hi! I have posted here once before and it was suggested that I start a new post for some help instead of tacking on to the end of an exisitng thread. Well I'm here to try to find out as much as I can about this disease as I can, so I can get started trying to deal with it. This all started on October 21, 2005 when I recieved a phone call from my wife who told me my 6 year old daughter was just diagnosed with this disease through a blood test she was given. I understand that she is more likely to get this due to the fact she is also a Type 1 Diabetic. My problem is I still dont really understand the whole disease. I do understand that it has something to do with wheat and things made with wheat but that is about the extent of my knowledge.Here is the safe list :

https://www.celiac.com/st_prod.html?p_prodi...-51105343534.36

Here is the forbidden list:

https://www.celiac.com/st_prod.html?p_prodi...-09105364334.06

What confuses me is some of things I've read that if you put your food in a pan that previously had food in it that contained gluten that the gluten free food that you cook in that pan afterwards would be contaminated. Now this is where I become confused is gluten some type of micro-organism that can move around and is not killed from heat or washed away with soap and water??? I thought it was just a product that contained some type of wheat ingredient. Like I said I'm completely new to the whole thing and have yet to speak with a Doctor which I will do on November 2, I'm just trying to educate myself and my wife so we can kind of get a head start on this whole thing.

Gluten particles can be stuck in non-stick pans.  Use good old-fashioned pans now.  Pam non-stick spray *original formula* is gluten free.  Wooden utensils would not be safe as they are very porous and will hang on to micro small bits of gluten.  I use the disposable cutting sheets they have out now for a cutting board.

Do NOT use the same colander for gluten free noodles that you were using for gluten FULL noodles.  Those holes will never be clean enough.  My son has his own colander ...a blue one.. for all his fruits, noodles.

We plan on what ever diet change we have to make will probably be made by the entire family whether it is needed or not. We dont think it would be fair to her if we ate all the stuff that she could not right in front of her.

You could go the entire family goes gluten-free route, or not.  We had our celiac kid eat his own food for the first 4 years of the diet.  We gave him his own shelves *bought a cabinet from Ikea, marked all his condiments with his name and gave him his own shelf in the fridge.  It worked for us for years.  However, after reading Dangerous Grains, I switched our entire family to gluten free.  It's pricey.  It's not as tasty, but doable.  I think that it's also unfair to make non-celiacs do the diet if they really don't want to.  We wanted to.  But we do eat what we want when we go out to dinner...except the celiac kid, of course.

We also decided once we do confirm that she has this disease that both of us and our 2 other children will be tested for it as well.

Very good idea.  It is genetic.  It came from someone!

Speaking of which is there any recomendations of Doctors in the Michigan Tri-County Area that anybody might be aware of???? What other things do we have to be aware of I read mention of soap and make-up just to name a few.

Sunscreen, chapstick, lipstick, lip-gloss, contaminated mayo, peanut butter, jelly, cream cheese (give your celiac her OWN jar of each.  Mark her name on it and never dip a contaminated utensil in her stuff.)  Size matters!  Snickers bars are gluten free.... Snickers Popables ARE NOT GLUTEN FREE.  Milky Ways HAVE GLUTEN.  Twizzlers HAVE GLUTEN.  Recess Peanut Butter cups Are GLUTEN FREE.

Post Fruity and Cocoa Pebbles are the ONLY regular store bought cereals that are gluten free.  MALT=gluten.  Ingredients change frequently because food manufacturers find cheaper ingredients.  Modified food starch MAY CONTAIN A GLUTEN SOURCE... Kraft foods will tell you the source if it is gluten.  Lots of other stores will not.  You have to call those 1800#'s to verify everything. 

Will we be able to eat out again?

OutBack Steakhouse and PFChang's have gluten free menus!!  They are good!

You can prepare her gluten free meals to take with you when you go out to eat.  It's safest and I've never had a problem doing that with my son in the four years we've been doing this.  Also, you can ask them to prepare plain chicken in Tinfoil with no seasonings, unseasoned veggies, tomato slices, lettuce.... Always ask if the fryer they use is exclusively used for french fries.  If it isn't, there will be serious cross contamination issue.  You can not give a celiac french fries made in oil they're preparing chicken nuggets in.  When in doubt...don't let her eat it.  It's that simple.  This is why we eat whatever we want when we do go out.  The rest of us do NOT have Celiac.  We just feel gluten as a daily event is harmful to the immune system.

If it is confirmed that she has it will it be more likely that any children she has will also have this disease??

She will have to have her children checked.  Advances are being made so that someday dx will be much easier. 

Open Original Shared Link

Here is a site that has cute gluten free shirts.  My son loves the Silly Yak shirts and sweat shirt he has.  R.O.C.K. is a great organization that sponsers a Walk for a cure every May.  We always do it.  You can contact R.O.C.K. and see if a walk is being done nearby.

I would appreciate any help or advice that can be provided and would like to thank those who have already responded. Thank you! Take Care and Stay Safe

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Open Original Shared Link

Open Original Shared Link

Here are two sites that have excellent food. The kinnikinnick products are great. Pizza crusts, donuts, breads, bages, all great. Shipping very reasonable. Orders up to $200 are only $10 Great deal!!

Chebe is great too. Very versitile. Also links to gluten free mall where they have Break bars. They are just like kitkat bars, only GLUTEN FREE. Shipping is high with chebe.

[darlindeb25]

Hi Dad--I was from Michigan, living on Long Island now. Since you have a computer, google--celiac support groups in michigan--that should give you a local support group to call and they may be able to give you names of doctors. If not--pm me and I will get in touch with my sister and see if she knows of any good doctors for you, she is a celiac and a dietitian in the central area. I just found a good doctor here, he doesnt know a lot about celiacs, but he is willing to learn and has 5 patients that are celiac--that's a good start. Deb

[KaitiUSA]

If you need some lists of gluten free products like makeups, soaps, foods, etc.. and mainstream brands that will not hide anything, and restaurant lists, and a few lists I have then feel free to email me and I will send them to you. You will find they are a tremendous help and can make life alot easier.

[ppshowal]

I have been gluten free since Sept 26th when I had a positive sm bowel bx.

I am still learning how to do this, but the most helpful thing I have found is

a book I read. "The Gluten-Free Bible" by Jax Peters Lowell, she has had celiac disease for over 20yrs. It offers all kinds of practical advice, as well as the latest on medical research and tons of valuable resources. Also find a support group in your local area they will be very helpful. Good Luck

[Claire]

If you have celiac you have to avoid not just wheat (all varieties, including spelt), but also barley, rye and oats (oats are all contaminated with wheat in the U.S.).

The "gluten" that harms us is a protein and is not actually alive, so, no, you can't kill it. Baking bread at 350 degrees or deep frying something at 375 doesn't get rid of it, which is why we can't have bread or breaded, deep-fried food. We also can't have food that doesn't have gluten but is fried in the same oil as something that does have gluten. At some high temperature the protein is indeed destroyed, but so is the food.

Gluten can be washed away with soap and water but you must be very thorough. Scratched non-stick pans allow particles to lodge and so can be contaminated. Wood is also bad for this. Old wooden utensils should be discarded, as should wooden cutting boards (although you could probably sand them down).

Keep asking questions. And don't be surprised if your doctor doesn't know the answer or has old info.

richard

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Amen to richard's remark about doctor's. Believe me you can find out more on this forum than you will from most doctors. There are exceptions of course but generally you won't get much into or you will get bad information - which is even worse. Claire

[Ursa Major]

Hi Dad,

I am sorry to hear that your daughter has both diabetes and now celiac disease. Unfortunately, it is likely that she developed diabetes because she had a gluten intolerance all along, and gluten intolerance can cause diabetes. You don't just develop gluten intolerance, you have it from birth. It may not cause obvious symptoms right from the start, but it's there.

Also, beware of baking with regular flour in your house. The flour dust will be in the air for 24 hours afterwards, and if she inhales it, she'll be sick.

You'll have to buy a new toaster, because there is no way you can possibly get all the crumbs out of it and clean it well enough for somebody with celiac disease.

Beware of anything containing regular vinegar, as it's made from grain and has gluten. Switch to a fruit vinegar (apple cider vinegar is what I use now).

Read the labels of EVERYTHING you buy that she eats, drinks or puts on her skin or into her mouth (like toothpaste, shampoo and soap).

[Jnkmnky]

I have been gluten free since Sept 26th when I had a positive sm bowel bx.

I am still learning how to do this,  but the most helpful thing I have found is

a book I  read.  "The Gluten-Free Bible"  by Jax Peters Lowell, she has had celiac disease for over 20yrs.  It offers all kinds of practical advice, as well as the latest on medical research and tons of valuable resources.  Also find a support group in your local area they will be very helpful.  Good Luck

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Supposedly, this book contains misinformation about how to live the gluten free lifestyle. I haven't read it, but it was discussed here at

l e n g t h and many people were not impressed with some of the advice.

[Nevadan]

Supposedly, this book contains misinformation about how to live the gluten free lifestyle.  I haven't read it, but it was discussed here at

l e n g t h and many people were not impressed with some of the advice.

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For a general how-to type book I would recommend "Wheat Free, Worry Free" by Dana Korn. For a more scientific overview of the problems of consuming gluten I recommend "Dangerous Grains" by Braly & Hoggan (it's already been mentioned in this thread)

One consolation: gluten-free diets can be very healthy. If you can, focus on having as much naturally gluten-free foods: fresh vegs, simply prepared meats, fish, etc instead of trying to replace gluten items with gluten-free pre-pkged food. It's also cheaper this way.

George

[jenvan]

I also highly rec 'Wheat Free, Worry Free'... Also, you may want to ck this publication out (pdf online) on living with Diabetes and Celiac. I believe the Gluten Intolerance Group put it together: Open Original Shared Link

[happygirl]

"Beware of anything containing regular vinegar, as it's made from grain and has gluten. Switch to a fruit vinegar (apple cider vinegar is what I use now)."

"Regular" vinegar is ok....I copied this from a previous post that helps explain (taken from "lovegrov" aka Richard)

"Malt vinegar is actually brewed from malted barley and therefore is not gluten-free. Brewing, as with beer, does not make the barley safe. "Vinegar" or distilled vinegar is distilled, which does make it safe. In addition, wheat is only very rarely used as the grain in distilled vinegar (some vinegars even use wood) so it's not very often a concern anyway. I no longer worry about distilled vinegar or vinegar as an ingredient, but that's a personal choice."

[Ursa Major]

"some vinegars even use wood

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Okay, so it may be gluten-free (which is good), but is it SAFE for anybody? Sounds possibly toxic to me.

[tarnalberry]

Hi! I have posted here once before and it was suggested that I start a new post for some help instead of tacking on to the end of an exisitng thread. Well I'm here to try to find out as much as I can about this disease as I can, so I can get started trying to deal with it. This all started on October 21, 2005 when I recieved a phone call from my wife who told me my 6 year old daughter was just diagnosed with this disease through a blood test she was given. I understand that she is more likely to get this due to the fact she is also a Type 1 Diabetic.

I'm sorry that she's got to deal with both, but glad that she was dx'ed young, and didn't have to suffer from it for a long time before finding out.

My problem is I still dont really understand the whole disease. I do understand that it has something to do with wheat and things made with wheat but that is about the extent of my knowledge. What confuses me is some of things I've read that if you put your food in a pan that previously had food in it that contained gluten that the gluten free food that you cook in that pan afterwards would be contaminated.

Be patient with yourself coming to understand the disease. It's a lot to learn and will take some time to come to a satisfactory knowledge of it. One thing that can help, in thinking about the contamination issue, is to think of gluten as though it were rat poison. If you made something in a pan that you added rat poison to, then cooked some food in it, you'd get rat poison in the food.

Now this is where I become confused is gluten some type of micro-organism that can move around and is not killed from heat or washed away with soap and water??? I thought it was just a product that contained some type of wheat ingredient.

Gluten - in general - is a generic term for grain proteins. All grains have some amount of protein in them, primarily in the germ. In the context of this forum, and celiac disease, it specifically refers to the primary protein in wheat (and it's relatives like tritical, spelt, semolina, and kamut), barley, rye, and (debatably) oats. (In the context of professional baking, it almost universally refers to wheat gluten specifically.) A protein is, molecularly, a sequence of amino acids, and - studies have suggested - it's a particular sequence of 33 amino acids that immune molecules in the intestines "recognize" and react to in such a way that a cascade of chemical reactions occurs - the end result being damaged intestines. Just like two words can be very similar to each other (alrighty and almighty look similar and you might mistake one for another), the sequence in wheat, barley, rye, and possibly oats are all so similar that they body can't tell the difference between them and reacts to all of them.

Since it's a protein, it cannot be "killed". In theory, proteins can be denatured, but to denature a protein to the point where a small sub-sequence is broken would require extreme temperature input. (There's some debate that prolonged exposure to 600F heat is sufficient, but this has not yet been demonstrated.) A good, thorough cleaning with a surficant (like soap) can remove gluten from surfaces, but - like dirt stuck under your fingernails - there are some places from which it's hard to remove gluten.

Like I said I'm completely new to the whole thing and have yet to speak with a Doctor which I will do on November 2, I'm just trying to educate myself and my wife so we can kind of get a head start on this whole thing. We plan on what ever diet change we have to make will probably be made by the entire family whether it is needed or not. We dont think it would be fair to her if we ate all the stuff that she could not right in front of her.

As has been noted, you don't have to go gluten-free for the whole family, but I can see that it would make it easier for her. (And there are different levels. At home, my husband and I eat the same shared meals (I'm not cooking him separate gluten filled foods when he can eat mine) but he has his own items that I don't share (like oatmeal and cereal and bagels) and that I don't prepare.) It can be more expensive to take the whole family gluten-free, depending on how your family traditionally eats and how much time/effort your family is willing to put into cooking. If you make use of prepackaged and prepared foods often, it will cost significantly more to have the whole family follow the diet. Cooking from scratch can minimize the cost impact, but may increase the time spent cooking, depending on what style of foods your family normally eats.

We also decided once we do confirm that she has this disease that both of us and our 2 other children will be tested for it as well. Speaking of which is there any recomendations of Doctors in the Michigan Tri-County Area that anybody might be aware of????

That's a very good idea. Celiac is genetic, and if one has it, you should all be tested.

What other things do we have to be aware of I read mention of soap and make-up just to name a few.

Anything that can get in her mouth. Anything. At that age, it would include toys - Playdoh has gluten, for instance - and anything left out. (Not that she'd eat them, but whatever she touches, and later then touches her mouth, may get into her system.) Soaps, shampoos, make-up, envelopes, craft projects, etc. Anything she comes in contact with must be considered. In this sense, it's useful to think of it either with the rat poison analogy, or comparing it to a highly-peanut-allergic child in a world of peanuts.

Will we be able to eat out again?

Yes. A few restaurants have gluten-free menus, and many can make PLAIN items that will be safe, but you do always run the risk of contamination, so I wouldn't make it a weekly event. Of course, those who don't test positive for celiac can order whatever they like. It will take more planning and advanced notice if you plan to have someone gluten-free eat at a restaurant that doesn't have a gluten-free menu, but phone calls and lots of questions while there can get you a long way.

If it is confirmed that she has it will it be more likely that any children she has will also have this disease?? I would appreciate any help or advice that can be provided and would like to thank those who have already responded. Thank you! Take Care and Stay Safe

Yep. As mentioned, it's genetic, so any kids she has would need to be tested. (I believe the odds for first degree relatives are 1 in 22.)

[ravenwoodglass]

I no longer worry about distilled vinegar or vinegar as an ingredient, but that's a personal choice."

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I would strongly suggest you add grain vinigar with a great deal of caution. Some do not react to this but in my families experience grain vinegars and distilled alcohols lead to DH sores and a strong reaction. Try it if you want but watch for a reaction.

[paw]

Dad, there is a specialised bakery called Open Original Shared Link near Selfridge ANG Base in Macomb County MI. If that is close to where you live you could check it out. All their products are gluten free. You could get bread there fresh baked as well as some desert items. They have a little bit of grocery items too. They do ship if people out of the area are interested in checking them out.

Since your daughter is diabetic, you will have to pay attention to the carbs. The bread will have less protein and more carbs than whole wheat bread.