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Hummingbird4

The Gluten-free Kitchen

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I wonder if the doctors would tell you the same thing if you were their daughter... Sorry but you got some bad advice from a doctor & you will suffer for it. It might be 20 years from now... Also, you will hold onto the high risk of cancer & other auto-immune illnesses with that small wheat contamination. The tests mean almost nothing. Ask some of us "old" ones that tested "negative" for years... We all have damage that now cannot be reversed & could have been avoided if we had known.

I would like it if you would not assume things. Not all doctors in this world are idiots. Maybe I have a really awesome great doctor - ever think of that? You know nothing of my life, of my tests or anything - just what I have posted above. What if my doctor happens to be a family member? Do you know if my doctor is a Celiac patient himself or not? Or that maybe some people in his family are? Do you think a family member would lie to me? I think not. At least people in my immediate family don't tell harmful lies. Maybe just maybe some doctors are good to their patients and they take time to listen and understand and do all of their tests and make sure that everything is okay.

Please don't preach to me, I know of all the risks and the cautions I need to take but I am my own person, I can make my own decisions. I was just saying that in my above post, I do not make my significant other change his whole eating style - I am the one who needs the change, not him. I 110% understand that you are trying to "protect" people from harms way, but not everyone is exactly the same. Did I ever say in my post that I was ingesting the flour I was baking with? No, I did not. I said that I bake stuff for my boyfriend with that flour. I do not eat it myself.

neesee herself says she doesn't keep a gluten-free kitchen - and she was diagnosed in 1988. Everyone can make their own choices and I am well aware of all the consequences.

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Oh hell no you're not being unfair. That's like asking an alcoholic if you can keep liquor in the house. And I don't know about your house, but in my house, my DH knows that we eat better because everything is freshly prepared and of higher quality because we quit buying junk that comes in a box. I know I am raising my son to enjoy and prefer fruits and veggies because they are available in our own in a multitude of formats (fresh, frozen, pureed, whole, diced, chopped, etc.). And I know that we are all eating better because when we're feeling lazy, we don't have that luxury of popping open a box that's going to make at least one, if not all of us, sick. People who say to me "I'm sorry you're a celiac. That must suck." I say "I'm not. I know I eat better than you." It's rude and snobby, but you know so is it to have people think your life is lacking when it's not.

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Krysta-Rae, I'm really glad you found your way to this board. I assume that things are working out just fine for you for now, and I hope you continue to do well. What is ringing alarm bells for previous posters (and me) is that you are being told that you do not have celiac, and apparently that you don't need to control your gluten exposure for the gluten intolerance.

I'm not saying that you have to have a gluten-free kitchen. As you pointed out, others don't and manage to make things work. I think what we are trying to do is protect you from the damage that we and others before us have suffered.

Celiac is end-stage gluten intolerance. And what you are describing with your own symptoms is at the very least, gluten intolerance, if not either wheat allergy or full-blown celiac. And gluten intolerance is associated with all kinds of autoimmune disorders, and if you've ever met anyone in person who has these kinds of gluten-associated autoimmune disorders, I can't imagine that you--and your boyfriend--would want to risk developing those in the future.

Many of us here were told our blood-work and biopsies normal. My bloodwork was NOT normal, but the doctor either lied or screwed up. And he should have known that blood-work is totally skewed and therefore invalid if you are gluten-free or even gluten-light--which is where you are, right? You mention that you just had normal blood-work and normal intestinal biopsies--but it sounds like you weren't eating the requisite amount of gluten for the tests to be valid.

Maybe your doctor is a wonderful doctor who just hasn't yet learned the ins and outs of celiac. Believe me--I have several doctor friends, and they were all taught in medical school--not long ago--that celiac is extremely rare (WRONG) , that the typical presentation of celiac is someone with constant diarrhea and wasting away (WRONG), that intestinal biopsy is the gold standard of diagnosis (hmmm, 22 feet of intestine, 4 1/4" samples, and villi damage is often visible only under a microscope, yeah, that's great odds), and that blood-work shows celiac no matter what the patient is or isn't eating (WRONG). They are also taught that IBS has nothing whatwoever to do with celiac, and that it is a matter to be controlled with medication (WRONG).

With training like that, even the greatest doctor in the world is bound to miss a few things when confronted with a potential celiac/gluten-intolerant patient.

And the real truth is that you have to be ingesting the equivalent of 4 slices of bread per day for 3-4 months for the antibodies to show up in the blood-work and for villi damage to be present. If your doctor believes differently, he is just plain wrong. Once your intestines have healed, it takes at least that amount of time (if not more) to do enough damage to show on the tests.

And most of us here find it shocking that, in the face of obvious reactions to gluten (like what you describe), doctors insist on continuing a high-gluten diet in order to CAUSE enough damage for a positive test result. Can you imagine anyone doing that for a severe peanut allergy? ("Nope, we can't say that they're allergic to peanuts until they go into anaphylactic shock, so they need to keep eating peanuts until that happens.")

The gluten baking you are doing reminds me of several threads (you can do a search) posted by members who worked in bakeries who found that they were reacting from just being around the gluteny flours. I don't remember if they ever figured out if it was from breathing flour dust, or from having it on their hands. There have also been many posts from moms whose celiac toddlers reacted to playing with play-dough.

Like you, I had a terrible rash (look up dermatitis herpetiformis if you haven't already--it's a rash with an automatic diagnosis of celiac, regardless of intestinal damage). And if you have wheat allergy as opposed to celiac, then being exposed to wheat flour, either through dust or skin contact, might really be dangerous for you.

I have seen posts here from numerous "old-timers" who were literally severely disabled before being (finally) diagnosed, not to mention people with diagnoses of fibromyalgia, lupus, and MS. Those people had either major improvement or total relief from their symptoms after going off gluten, and ALL of them were absolutely furious that nobody told them to go gluten-free BEFORE all the damage was done--again, regardless of blood-work or intestinal damage.

If this sounds like preaching to you , then I apologize. But I got preached to when I first came on this board--and I believe it may have saved my life. And I had FEWER intestinal symptoms than you do. :o

I can understand you might feel a bit attacked, by all of us well-meaning old farts. And I do apologize for that, too. But please try to understand that most, if not all, of us have been where you are now. It's just possible that we might have a different viewpoint (as in personal) of the damage that can be done.

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As far as my non gluten-free kitchen goes, I will know soon enough if I've made a mistake. My new Dr. is running a ttg. I had a lot of diarrhea with my diverticulitis attack and she wants to check for compliance to the diet. :lol:

I do think it isn't right to feed a diabetic refined white rice flour. Even with artificial sweeteners, it's just too much carbohydrate for him! Sorry, but whole wheat grains seem to be healthier for him.

I'm not the only one that matters around here.

neesee

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I do think it isn't right to feed a diabetic refined white rice flour. Even with artificial sweeteners, it's just too much carbohydrate for him! Sorry, but whole wheat grains seem to be healthier for him.

neesee

My endocrinologist told me that she is now routinely testing all diabetics for celiac/gluten intolerance, as she sees them together so frequently. My blood sugar (I was "pre-diabetic") came down on the gluten-free diet, even though I was having tons of carbs.

What about brown rice flour, gluten-free oats, teff, sorghum, and ground flax seed in place of both wheat and refined white rice flour? That way, you might be avoiding the worst of both possibilities.

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My endocrinologist told me that she is now routinely testing all diabetics for celiac/gluten intolerance, as she sees them together so frequently. My blood sugar (I was "pre-diabetic") came down on the gluten-free diet, even though I was having tons of carbs.

What about brown rice flour, gluten-free oats, teff, sorghum, and ground flax seed in place of both wheat and refined white rice flour? That way, you might be avoiding the worst of both possibilities.

My blood sugar has entered the pre diabetic ranges on the gluten-free diet. I had to cut back on all the goodies! :lol:

If my test is bad, I'll make some changes.

As far as I know type 2 diabetes is not associated with celiac. My mother was type 1. She died with all the complications a diabetic can have. It broke my heart and I never got over it. She was 55.

neesee

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I love this thread.

I wish my wonderful husband and teenage daughter would read it and miraculously think "Oh, I might really be hurting her if I get a tiny bit of wheat bread crumbs in the utensil drawer or on the counters. Maybe I should use special pans and utensils or even clean up after making a grilled cheese sandwich." Or even "We should make the kitchen completely Gluten-free, I'll throw away my gluten filled bread, cookies and crackers."

Like that would ever happen. <_<

Count yourselves lucky if you have sympathetic people in your home. Mine try, sometimes, but don't really get it. :blink:

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As far as I know type 2 diabetes is not associated with celiac. My mother was type 1. She died with all the complications a diabetic can have. It broke my heart and I never got over it. She was 55.

neesee

The impression I got from my endocrinologist was that she thought that gluten could trigger the immune system to attack just about anything, and that in some type 2 diabetics (those who test positive for celiac), gluten is the trigger for the autoimmune attack on the pancreas.

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I love this thread.

I wish my wonderful husband and teenage daughter would read it and miraculously think "Oh, I might really be hurting her if I get a tiny bit of wheat bread crumbs in the utensil drawer or on the counters. Maybe I should use special pans and utensils or even clean up after making a grilled cheese sandwich." Or even "We should make the kitchen completely Gluten-free, I'll throw away my gluten filled bread, cookies and crackers."

Like that would ever happen. <_<

Count yourselves lucky if you have sympathetic people in your home. Mine try, sometimes, but don't really get it. :blink:

dksart, the cleaning of the kitchen and the switch to gluten-free would not have happened if I hadn't done it. I did all the shopping, all the cleaning, and all of the planning. I explained cross-contamination, and my husband said he would support me (even though he doesn't like that I have celiac disease and doesn't think it's "fair" for someone asymptomatic like me to have to go gluten-free). Your husband might do the same if you asked, but don't anticipate he'll help you with all the hard work to get there. :P My back was aching after cleaning out my kitchen. Sheesh, it was worse than moving! At least when you move, you get a new kitchen!

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The impression I got from my endocrinologist was that she thought that gluten could trigger the immune system to attack just about anything, and that in some type 2 diabetics (those who test positive for celiac), gluten is the trigger for the autoimmune attack on the pancreas.

The autoimmune attack on the pancreas is type 1 diabetes, not type 2.

It is possible for someone who is already a type 2 diabetic to develop type 1 as well, however this is rare. Unofficially, there is nomenclature of "type 3" diabetes, refering to someone who has autoimmune damage to the pancreas resulting in a lack of insulin production, combined with insulin resistance at the systemic cell level. Most commonly, this combination results when a type 1 consistently overeats, takes extra insulin to "compensate," and becomes obese. Type 2 diabetes is not exclusive to people who are overweight.

I have been a type 1 diabetic for over 22 years. There is a positive correlation between type 1 diabetes and celiac disease. There is no correlation with type 2 diabetes and celiac.

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The autoimmune attack on the pancreas is type 1 diabetes, not type 2.

It is possible for someone who is already a type 2 diabetic to develop type 1 as well, however this is rare. Unofficially, there is nomenclature of "type 3" diabetes, refering to someone who has autoimmune damage to the pancreas resulting in a lack of insulin production, combined with insulin resistance at the systemic cell level. Most commonly, this combination results when a type 1 consistently overeats, takes extra insulin to "compensate," and becomes obese. Type 2 diabetes is not exclusive to people who are overweight.

I have been a type 1 diabetic for over 22 years. There is a positive correlation between type 1 diabetes and celiac disease. There is no correlation with type 2 diabetes and celiac.

Bless you Peter. I needed your help on this one! I've been trying to find articles on the subject.

Dh says I've been on the computer long enough today. :lol:

Good night all :D

neesee

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Just to clarify to all, my husband has celiac and I do not bake with gluten flour at all - I do not keep it in the house as it's poison to him and I know that.

I have replaced all cookware and utensils for my husband's foods and my gluten ones are separate and labeled.

CC is a huge concern for us.

I do not bring flaky gluten breads nor gluten pastries into the house.

We both eat gluten-free cereals for breakfast

I do not keep gluten cookies nor snacks in the house

He has rule over the kitchen to keep it as gluten-free as he sees fit. It's the least I can do for him to keep him

well.

By the way, did I ever mention that my husband went 27 years of being misdiagnosed and now has multiple other health problems due to this? I would give up everything I own to get his good health back, even if that still meant he has Celiac Disease - but without the complications.

We who have been through this know what I am talking about - we know what it's like to have to deal with continuous failing health and doctors who dismiss overt symptoms and continously trip over their own incompetence. Do we call every doctor an incompetent? No, but we've learned to become untrusting and highly suspicious about the diagnoses we do get and we subsequently question each doctor's level of competency. So ergo, we try to pass info about our experiences onto others in the hopes that they will not have to suffer as we did.

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Peter, I understand what you are saying but disagree with your conclusion.

I think there is anecdotal evidence that gluten can cause insulin resistance (type 2) diabetes. This also fits in with what I keep hearing from the OBGYNs, that "carbs" are to blame for PCOS (polycystic ovarian syndrome), which is also STRONGLY linked with Type 2 diabetes--but going off gluten (NOT going low-carb) seems to have totally cured that for me, too.

No, there don't seem to be any studies showing a correlation, but we all know how the pharmaceutical industry--who funds nearly all the studies--"buries" any evidence that doesn't support the conclusion they are hoping for.

Saying that there is no correlation between type 2 diabetes and celiac is like saying that there is no correlation between vaccines and autism. People who have LIVED it know better than the "experts" who dismiss the real-life evidence.

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The connection between type 1 diabetes and celiac is that they are both auto immune diseases. Type 2 is not. Type 2's don't make antibodies. Type 1's do. Women with pcos don't make antibodies either. They have insulin resistance.

neesee

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The connection between type 1 diabetes and celiac is that they are both auto immune diseases. Type 2 is not. Type 2's don't make antibodies. Type 1's do. Women with pcos don't make antibodies either. They have insulin resistance.

neesee

But that's like saying that people with fibromyalgia and IBS don't make antibodies to gluten. We know now that they they do, but nobody ever looked for them.

NOBODY HAS EVER DONE A STUDY LOOKING FOR GLUTEN ANTIBODIES IN TYPE 2 DIABETIC AND PCOS.

I'm not saying that gluten is the one and only cause of type 2 diabetes. But if it's not, it sure as heck has a strong link.

And given that women with PCOS are told to control their symptoms with a low-carb diet, and given how many of those symptoms have links to gluten intolerance, I think it's pretty clear that there's a link there, too. And given my own "miraculous recovery" from those symptoms just from going off gluten, I suspect it's more than just a link.

Can you explain why my PCOS (including insulin resistance) disappeared on a gluten-free diet when I am, if anything, eating more carbs than I did before going gluten-free?

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But that's like saying that people with fibromyalgia and IBS don't make antibodies to gluten. We know now that they they do, but nobody ever looked for them.

NOBODY HAS EVER DONE A STUDY LOOKING FOR GLUTEN ANTIBODIES IN TYPE 2 DIABETIC AND PCOS.

I'm not saying that gluten is the one and only cause of type 2 diabetes. But if it's not, it sure as heck has a strong link.

And given that women with PCOS are told to control their symptoms with a low-carb diet, and given how many of those symptoms have links to gluten intolerance, I think it's pretty clear that there's a link there, too. And given my own "miraculous recovery" from those symptoms just from going off gluten, I suspect it's more than just a link.

Can you explain why my PCOS (including insulin resistance) disappeared on a gluten-free diet when I am, if anything, eating more carbs than I did before going gluten-free?

Well, why did I develop pre diabetes after 20 years on a gluten-free diet? I think it's because I ate too many gluten-free carbs. When you are prone to insulin resistance, it doesn't matter where you get your carbs. Gluten or gluten-free. Diabetics have to eat low carb. Especially the type 2s.

Hey, I've been through this. Mom was type1 and dad was type 2. Now dh and my brother have type2. Their blood sugar readings are much better when they low carb it and lose weight and exercise. They plain got too heavy.

neesee

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I agree with Fiddle faddle. There is a doctor in Austin, texas that specializes in diabetes & she is trying to get other doctors to test ALL their diebetic patients for celiac. I do not know her name but read an article about her somewhere. If you are interested you could probably google it or contact the Austin Celiac support group - they might know her, heck she is probably a member there...

The reason that people gain too much weight is that they are eating grains, mostly wheat. I would quote from "Good Calories Bad caloires" by Gary Taubes but I loaned out my book... There is a great section on diabetes. I highly recommend it.

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QUOTE (Fiddle-Faddle @ Aug 2 2008, 12:54 PM)

But that's like saying that people with fibromyalgia and IBS don't make antibodies to gluten. We know now that they they do, but nobody ever looked for them.

I would really like to see some websites that back up this statement. So far I can't find any. I prefer .gov or .edu. sites as they are the most reliable sources.

neesee

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I've become frusterated with his subject so I'm going to bow out. At this point, I agree to disagree :)

As far as the op and her gluten-free kitchen, I think she should do what makes her comfortable. If that's a completely gluten-free kitchen and her family is in agreement, she should do it.

neesee

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I am a single person, so I don't have this problem right now.

As far as wishing your Hubb & DD to see this thread, send them a lovely mass e-mail with the link and a smile.

:)

I finally went off on my Sister last week (it was coming). I felt a little guilty afterwards, but as I was typing her the 'I don't know what your problem is' message I felt relieved and empowered. And her boyfriend told her 'OMG your Sister just told you off' lol :lol:

do what YOU need to do, Sweetie.

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I have to say that the way your coworker said it maybe wasn't the best, but...

My daughter and I are both gluten free (me for 4 years, her for 2 months). My husband is not. As much as it would be easier for me if we had no gluten in the house, it would be unfair for him. Bread, for instance, has come a long way, but it is still blah compared to real bread. I wouldnt think of not allowing him to have that in the house. He has his own toaster. I don't use his toaster oven, either.

When it was just me eating gluten free, we made 2 pastas (separate pans, strainers, utensils). Now with 2 of the 3 of us intolerant, we only make one. But when it was just me, why would I want them to eat something that was inferior in taste, texture and more expensive because it was more convenient or easier for me??

It takes more work and care to have a mixed kitchen, but...

We both cook. we both bake. We are experimenting constantly with recipes. He is very good with making gluten free meals when it is his turn to cook--especially now that there are 2 of us with celiac in the home. But when I'm not here, or my daughter is at school, he should be able to enjoy what food he wants, as long as he is careful about cc. Besides, again, there is cost involved with making him "go out" for anything he wants with gluten.

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there is plenty they can eat at home, I make great meals, they can eat anything they want outside the home. By the way, I have a husband and two teenagers (one of whom is leaving for college in 4 weeks).

This comment got under my skin, though. Am I being unfair to my family?

when i lived with my family my food kept getting contaminated, or my hands, either way i kept getting sick and that was far less fair. when i moved out and in with my mate, i told him strait up "we wont be having any gluten when we live together" and he said "im fine with that."

why, some people have asked, is he okay with giving up so much food? the truth is : everything they make with gluten, they also make without it. he found he loves tapioca bread, gluten-free english muffins, gluten-free cereal, pasta, waffles, pure meat burgers, vegan butter & cheese substitutes, & most of all vanilla soy milk (he downs the stuff like football fans down beer), and everything else we now shop for. he swears it helps him loose weight, and tastes better, too. its common sense that organic food is healthy, and always benefits your family be it gluten-free or not.

when he wants a sub, he goes out for it, when friends come over and want gluten food, they cook it in my special quarenteened "gluten pots" and paper/plastic disposable dishes. when they bring over gluten food, they eat it sitting on the floor in staid of over my clean counter or table. i apologize for the inconvenience, but they all just say "oh i really don't mind" - they do comment on "what a bummer it must be to have to brush your teeth before kissing your girlfriend just because you ate some pizza", but thats about it, and cant be helped. it helps that they've seen me get sick, and think i look like im "going to die," so they all take it seriously.

your coworker is just plain dense - you don't open a bag of peanuts in the face of a person with peanut death allergy, so how is it going to far to keep gluten out of your kitchen?

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When you are prone to insulin resistance, it doesn't matter where you get your carbs.

neesee

I think it is quite possible that gluten can CAUSE you to be be prone to insulin resistance.

And perhaps it does matter where you get your carbs--mine were mostly from corn, brown rice, and potatoes (plus dark chocolate chips, which is sugar, of course), but in their normal state, not refined into flours. I think gluten-free breads, cookies, and cakes DO contribute to insulin resistance more than what I've been eating.

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As the non-celiac (but still the cook) in a household of 4 that's 50% celiac:

we don't have wheat flour, or flour-containing mixes, in the house at all. You cannot GET the stuff out, once it's open...

we do have a top shelf of gluten-containing food in a pantry separate from the rest, and a sealed box for bread.

we do have a cabinet of gluten-baking/cooking items (mixer, pans, blender)

We use only stainless steel cooking implements, and never cook gluten-free and not gluten-free at the same time.

we do have a "no gluten" island (literally) in my kitchen. We also have a "gluten zone" at one end of a counter. At the end of the day, all counters are washed off

we do label ALL containers (pb, jelly, butter,etc.) as "not gluten-free" or "gluten-free"

the non-celiacs wash their hands after EVERY food contact. We have the cleanest hands in the world :)

This has worked for 5 years, with nary a glutenation. You just need to figure out what works for you.

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I am the only one in our house that eats gluten free so as chief cook and bottle wahser, all our meals are gluten free and with a picking teenage son in the house I have made him happy. :D My dh and ds have their own bread and cookies unless I bake cookies. I guess I really need to think more about cc when it comes to mayo and things like that but we don't use them to much. I know I need to get a new toaster, that is on my list on long with new pots and pans. So far this works out for us Just find what works for you

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