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rainabear

Anyone React Less To Cooked Gluten?

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I've been gluten-free for about 4 months now. I started because my maternal uncle has similar health problems as me and got a lot better when he went gluten free. I have chronic fatigue and joint pain, among other things, when eating gluten, with little to no intestinal problems. I miss gluten, but I LOVE feeling better. The fact that an accidental glutening leads to at least 2 days of misery is enough to keep me on the straight and narrow, even though I have had no blood work or biopsy.

However, I have noticed that I have different reactions to accidental glutening (which has happened too often). For instance, if I even look at a product containing malt, I feel awful for days. On the other hand, a few times I have eaten some cooked product, found out it contained wheat (darn imitation crab), expected a reaction, and either not had one or only a mild one. My mom, who has similar health problems, has also been trying to avoid wheat some, but has been having a harder time sticking with it...she has definitely noticed reactions to some products, but says she can eat a small amount of cooked cracked wheat daily without a problem.

I've read that the actual protein fragment (gliadin) that causes problems with celiacs is not very susceptible to heat damage...so I'm a little confused about what's going on here. Does anyone else with confirmed celiac notice that cooked gluten causes less problems, or could this perhaps mean that I have some sort of related allergy instead of actual celiac disease?

I suppose if I really wanted to know, I should get the blood work done, but I am finally feeling half-alive for the first time in 4 years and am hesitant to go back on gluten just for a test. My mom just got the blood tests done yesterday though, so I will be interested to hear what hers say.

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I have no idea since gluten isn't altered by cooking. It could be more about what you ate with the gluten (like a malt shake would be much harder on the stomach with all the dairy and fat than a bit of gluten in a veggie dish)? And I am a huge fan of dietary response - why delay feeling better just for a piece of paper that makes it "official"? I don't need a piece of paper to tell me what I can and cannot eat - I make those decisions for myself.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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I'm guessing that the imitation crab contained wheat starch, which in theory is supposed to be gluten-free, but in reality often does contain residual gluten.

Also, SOME imitation crab does not contain gluten! I think the Trans-Ocean brand has potato starch, not wheat starch.

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It could mean that you are dealing with an allergy as opposed to celiac or gluten intolerance. Malt could be made with barley, since you are reacting to malt it could mean you are allergic to barley rather than intolerant to gluten. A person can certainly be allergic to wheat as opposed to intolerant to gluten as well. You could do a full elimination diet to narrow down what foods are a problem for you.

Personally, I find, with my allergies, that many offending foods are easily tolerated once cooked. Gluten isn't that way though.

Michelle

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I've been gluten-free for about 4 months now. I started because my maternal uncle has similar health problems as me and got a lot better when he went gluten free. I have chronic fatigue and joint pain, among other things, when eating gluten, with little to no intestinal problems. I miss gluten, but I LOVE feeling better. The fact that an accidental glutening leads to at least 2 days of misery is enough to keep me on the straight and narrow, even though I have had no blood work or biopsy.

However, I have noticed that I have different reactions to accidental glutening (which has happened too often). For instance, if I even look at a product containing malt, I feel awful for days. On the other hand, a few times I have eaten some cooked product, found out it contained wheat (darn imitation crab), expected a reaction, and either not had one or only a mild one. My mom, who has similar health problems, has also been trying to avoid wheat some, but has been having a harder time sticking with it...she has definitely noticed reactions to some products, but says she can eat a small amount of cooked cracked wheat daily without a problem.

I've read that the actual protein fragment (gliadin) that causes problems with celiacs is not very susceptible to heat damage...so I'm a little confused about what's going on here. Does anyone else with confirmed celiac notice that cooked gluten causes less problems, or could this perhaps mean that I have some sort of related allergy instead of actual celiac disease?

I suppose if I really wanted to know, I should get the blood work done, but I am finally feeling half-alive for the first time in 4 years and am hesitant to go back on gluten just for a test. My mom just got the blood tests done yesterday though, so I will be interested to hear what hers say.

Somehow I am not willing to go order a hamburger on bun to for science, the pope, or future generation's sake of knowing whether cooked gluten is better than uncooked gluten.

Personally, I think you are in denial and trying to save yourself from a lifetime of "doing without" by coming up with excuses. If I eat only a spoonful of that bisque, it is not less dangerous. My potassium and sodium levels, as well as hydration and nerve function, will plummet. I will be in the ER, under the 5 minute rotation for those who have to have constant monitoring, on immunosuppressants. Interestingly enough, your gut does not care whether you ate a teaspoon or a pint, cooked or uncooked, malted barley or cracked wheat. It all does damage. The issue with barley for you is not likely to be because it is uncooked. Most malted barley is cooked and over processed at some point. You are very likely lactose intolerant, and barley malt is the smoke to a lactose fire. Malt is generally not put in things that lack dairy. This would explain the worse reaction to things with malt, and as lactose intolerance is often caused in Celiacs by gluten damage, it is explained by your apparent "ces't la vie" attitude towards gluten.

Be careful. Your doctor can fire you for not following treatment, but it falls on you to prevent worse things. At the end of the day, the doctor won't be the one with peripheral nerve damage and cancer. Pick your poison.


Diagnosed with Celiac on April 24, 2007

The bad:

Ovarian Cysts- unable to carry a child

Nerve damage

Severe intestinal damage

Near death experiences

The good:

A new outlook on life

A newfound respect for others who must face challenges that they did not necessarily want to face today

Healthy Cookies

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Ths short answer from me is no. I loved drinking malted milkshakes when I was a kid in the 50's and I was a snotty nosed little kid with asthma. Later I began burping and developing migraine headaches and still I drank milkshakes. I even cheated on my lactose free diet my mum had me on when I was 12.

Today I am a lot older and finally somewhat wiser when it comes to food. Now at last 56 years later I am restricting gluten and dairy.

When you get tired of being sick you will abstain from your favourite foods. Please don't leave it as long as I did because now I have severe osteoporosis and I have broken several bones in the past 2 years.

Joss

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Thank you to the nice responses, that is sort of what I thought.

To the others, just to be clear, I have not and am not planning on purposly eating any gluten containing product, even if my doctor wants me to in order to obtain an "official" diagnosis. I have messed about 6-8 times, as I am sure most of you did in your first few months on the diet, and which I think is actually pretty good for the first 4 months on a completely new and very restricted diet. I am already "tired of being sick," which is why I regularly watch my husband and friends eat a whole bevy of things I can't have. I've been tired of being sick for the past 4 years of hell, I'm not about to go back for a lousy piece of bread. The few times I've even fantasized about cheating, it's remained squarly in fantasy land because I don't want days of pain and fatigue.

I actually don't care for malt all that much, it just seems to be the thing that I have been glutened with about half of the time I've messed up. If I were going to cheat, it sure as hell wouldn't be with malt.

I have actually been wondering about this for myself for months based on a few accidents, but not really curious enough to look into it...the reason I finally joined a forum and asked is because my mother, who has much worse joint pain than I do in addition to GI problems, has been doing the whole "try to avoid gluten until day 3-4 when she gives in" thing and had been trying to tell me that she could tolerate a serving of cooked cracked wheat. I'm worried that even with blood tests she will continue along this road. I've watched her be sick and miserable since I was a little kid, and I would love to know that something I convinced her to do helped significantly. I will be showing her the nice responses from these threads if/when her blood tests come back positive. Additionally, since none of my related family members with seeming gluten problems have actually had any positive (or even negative) celiac tests, blood or biopsy, it is actually possible that we actually have an allergy or other problem with wheat or another grain, and not celiac. Just because you have celiac and feel better not eating gluten, does not mean that I do just because I feel better not eating gluten.

Even though I thought I made it clear in my original post that "The fact that an accidental glutening leads to at least 2 days of misery is enough to keep me on the straight and narrow" and "I am finally feeling half-alive for the first time in 4 years and am hesitant to go back on gluten just for a test," you others might consider that even if I was a person just looking for an excuse to cheat, your message would have been better recieved in a pleasant tone. The tough love approach tends to work better with people you actually know, or even people whose messages you actually read for comprehension.

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It could mean that you are dealing with an allergy as opposed to celiac or gluten intolerance. Malt could be made with barley, since you are reacting to malt it could mean you are allergic to barley rather than intolerant to gluten. A person can certainly be allergic to wheat as opposed to intolerant to gluten as well. You could do a full elimination diet to narrow down what foods are a problem for you.

Personally, I find, with my allergies, that many offending foods are easily tolerated once cooked. Gluten isn't that way though.

Michelle

That is what I was thinking. With the non ana allergies in our household, cooked items do have less of an initial reaction BUT I do believe they still damage the body long term. I think of it this way -- they are more like the sneaky burglar who breaks in when you are sleeping rather than the gun toting bank robber during mid-day. They both steal and do damage but one gets your attention more than the other.


Shellfish free since 1980

Milk free (all forms) since 1991

Feingold in 2003

First gluten-free round 2007

Now entering full time Gluten free, egg free, almond/peanut free

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That is what I was thinking. With the non ana allergies in our household, cooked items do have less of an initial reaction BUT I do believe they still damage the body long term. I think of it this way -- they are more like the sneaky burglar who breaks in when you are sleeping rather than the gun toting bank robber during mid-day. They both steal and do damage but one gets your attention more than the other.

I think it depends on what you are allergic to and how your body responds. To totally eliminate all the foods I'm allergic to, I'd almost be eliminating entire food groups, and the nutrition they provide. I cannnot eat raw tree fruit (have immediate oral reactions, and then GI reaction later), but tolerate them very well when cooked. No GI issues that I have determined. It's when I have gluten, MSG, sulphites or raw fruit that my gut reacts.

Michelle

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Rainabear (love the name!), is there any wya you can convince your mom that gluten is literally addictive? There are studies showing that it creates a opioid response in the brain (which is why we can't stop eating the pasta, bread, cookies, cookie DOUGH, etc). Karyn Seroussi wrote a fascinating and very well-researched book about this: Unraveling the Mysteries of Autism

Basically, your mother gives in after 3-4 days because that's when the strongest withdrawal cravings hit.

If she could be armed with substitutes--even if they're not particularly healthy--to get her through the first 2 weeks, it's all easy after that. My own substitutes were Frito's (yes, they're gluten-free!) and chocolate chips (not just Nestle, but Guittard chocolate chips, bought in bulk at Costco!). And even with chowing down on those in large amounts, I STILL lost 20 pounds in the first couple of months (which was a good thing, as I was about 40 pounds overweight).

Best of luck to you and your mom, and please tell her to come join us, we've all been through it and can help her!

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Rainabear (love the name!), is there any wya you can convince your mom that gluten is literally addictive? There are studies showing that it creates a opioid response in the brain (which is why we can't stop eating the pasta, bread, cookies, cookie DOUGH, etc). Karyn Seroussi wrote a fascinating and very well-researched book about this: Unraveling the Mysteries of Autism

Basically, your mother gives in after 3-4 days because that's when the strongest withdrawal cravings hit.

If she could be armed with substitutes--even if they're not particularly healthy--to get her through the first 2 weeks, it's all easy after that. My own substitutes were Frito's (yes, they're gluten-free!) and chocolate chips (not just Nestle, but Guittard chocolate chips, bought in bulk at Costco!). And even with chowing down on those in large amounts, I STILL lost 20 pounds in the first couple of months (which was a good thing, as I was about 40 pounds overweight).

Best of luck to you and your mom, and please tell her to come join us, we've all been through it and can help her!

That's a very good idea. I think, personally, it took about 3 weeks for me to get over withdrawal. During that time I was absolutely exhausted and crabby (even though it felt very different than fatigue on gluten, mostly because I was actually able to sleep). And, like you say, I was not eating particularly healthy...not only did I eat a lot of gluten-free junk food to help the withdrawal, but I ate it because I was too exhausted to actually cook...I went through a lot of corn chips, caramel popcorn, and those tai kitchen instant noodle things.

My mom actually gave up milk for lactose intolerance because of her GI problems, so I know she can do it, it's just a matter of that last little bit of convincing. It took me a while to decide to start too. Last time we talked about health stuff on the phone, we were talking about her problems with insomnia and I said mine got 99% better after I went off gluten and she said, "now that I think of it, when I'm not eating gluten my insomnia is a lot better" so maybe she's close.

Let me tell you though...this situation we're in right now where I'm getting better and trying to bring her along is a whole heck of a lot better than the situation we were in 4 years ago, when I was starting to get sick and she was feeling guilty for passing on bad genes.

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Somehow I am not willing to go order a hamburger on bun to for science, the pope, or future generation's sake of knowing whether cooked gluten is better than uncooked gluten.

Personally, I think you are in denial and trying to save yourself from a lifetime of "doing without" by coming up with excuses. If I eat only a spoonful of that bisque, it is not less dangerous. My potassium and sodium levels, as well as hydration and nerve function, will plummet. I will be in the ER, under the 5 minute rotation for those who have to have constant monitoring, on immunosuppressants. Interestingly enough, your gut does not care whether you ate a teaspoon or a pint, cooked or uncooked, malted barley or cracked wheat. It all does damage. The issue with barley for you is not likely to be because it is uncooked. Most malted barley is cooked and over processed at some point. You are very likely lactose intolerant, and barley malt is the smoke to a lactose fire. Malt is generally not put in things that lack dairy. This would explain the worse reaction to things with malt, and as lactose intolerance is often caused in Celiacs by gluten damage, it is explained by your apparent "ces't la vie" attitude towards gluten.

Be careful. Your doctor can fire you for not following treatment, but it falls on you to prevent worse things. At the end of the day, the doctor won't be the one with peripheral nerve damage and cancer. Pick your poison.

Did you even read the original post? I'll leave it to the board moderators to decide if this qualifies as abusive or not, but I think it was.


If you're going through hell, keep going. ~Winston Churchill

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I can see the finger pointing in my direction. I have no intention of apologizing, and 'tough love' is what you will get from me. I have had to deal with this disease alone, while being only 18 and trying to keep my own insurance and having to hold down a job to keep what I can eat on the table and the roof over my head. And to pay my own $50,000 medical bills. Do not try and tell me to soften up, as it will not work.

Your post came off as you trying to say that while you try to stay away from most gluten so as to avoid getting sick, _______ and ______ and gluten cooked like ________ were alright. If that is not what you were trying to say, then there was a miscommunication. In the future, it would be nice if you would address these issues in a private message.

My own dad has decided since I was diagnosed based on the same symptoms that he has, he will try a whole grain wheat and barley filled diet. Parents are reluctant to see the light, and you can't really do much for them. That is their choice to make. They often feel that it is bad enough that you are sick and cannot be cured, but then have to deal with guilt that it might have been their fault. The ultimate response is to wage a hardcore war with the possibility that they are suffering from the same things. My grandmother died of colon cancer after being told to lay off the wheat. If the medical community can't tell your mom, and you can't tell your mom, then nothing for now can help. The only things you can do are tell her that it is alright for her to have some responsibility for this and let her know that you are not holding it against her, and to live a healthy and gluten free life yourself. Hopefully for your sake and hers, she will decide to join you.

The only apology I make is for the massive wall of text.

~Destiny, the gluten free pumpkin spice bread baker


Diagnosed with Celiac on April 24, 2007

The bad:

Ovarian Cysts- unable to carry a child

Nerve damage

Severe intestinal damage

Near death experiences

The good:

A new outlook on life

A newfound respect for others who must face challenges that they did not necessarily want to face today

Healthy Cookies

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I in no way meant to be abusive or mean to anyone. I gave my opinion based on wjat I took from what was written.

Yes, I read the post.

If everyone would like, I will delete all posts from this topic, however, I would like for you top take notice that what I wrote was not particularly mean. I shared what my experience with gluten is, and tried to give a reason that malted milkshakes would cause more of an issue, yet again based on my experiences and advice from my doctor. The end of the post was pointing out that it is up to every individual to make their own choices, and reap whatever comes of it.

I feel that it would be a bit overzealous to ban someone from a website for such a post, but if you feel that it should be reported, then do what you feel that you need to.


Diagnosed with Celiac on April 24, 2007

The bad:

Ovarian Cysts- unable to carry a child

Nerve damage

Severe intestinal damage

Near death experiences

The good:

A new outlook on life

A newfound respect for others who must face challenges that they did not necessarily want to face today

Healthy Cookies

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Did you even read the original post? I'll leave it to the board moderators to decide if this qualifies as abusive or not, but I think it was.

I am not a mod, but I don't believe it was abusive. However, I think DestinyLeah certainly misunderstood your original post. I thought you were very clear that you did not purposely consume gluten.

DestinyLeah, I think your heart is in the right place, and that you were trying to help. But I don't understand why you would not want to apologize for misunderstanding JNBunnie's original post. And I don't understand what you meant by "soften up," either. Do you think that it is weak to apologize for misunderstanding someone's intent? But saying, "tough love is what you'll get from me," does not entitle you to misinterpret someone's words, lash out, and then not need to apologize. Lashing out does not make you stronger.

I don't think you need to delete your posts. They might do some good for some newbie reading along. And I am very sorry that you are in such a difficult situation with your home life. That must

be terribly stressful. But it sure looks like you are lashing out at JNBunnie for asking a perfectly reasonable question for someone only 4 months into the celiac learning curve. It sounds like you are angry at your parents, and that is perfectly understandable. You SHOULD be angry with them!

But to accuse JNBunnie of being in denial was not warranted by her question, especially when she was so clear in her original post. In fact, I have not seen very many others here who were convinced of the necessity of staying off gluten without a firm diagnosis!

When you aim "tough love" at someone who is clearly already on the right track, it does come across as though you are slapping that person in the face--when they don't need it.

We all misunderstand people from time to time; most people who misunderstand something apologize for doing so, especially when they are aware that their misunderstanding caused someone unnecessary hurt.

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I do not feel that I am lashing out. I am sure that there is no way to really rectify the situation, since I have done my best to explain my position and it seems to have not worked.

I'm not angry with my parents, just resigned. My mom got tested, and doesn't even have the genes. (Her mom was the one who died, but was adoptive and actually her great-aunt) Daddy has to, and doesn't care. All I can do is love him while he's here. I do not for one second believe that will keep him here any longer, but it is what I can do.

By "soften up" I am referring to the PMs I get occasionally about only offering kind, sugary-sweet support. There are other people to offer sugar. If I tried, it would almost certainly come off as Brett Farve posing as a woman. Not fooling anyone. I lack the ability to be sugary sweet, so I don't try. I offer advice as I can, with a heavy dose of realism.

So far as apologies, I do apologize for misunderstanding the original post. However , I took from it what I did, responded based on that, and was ripped into. I think enough justice has been served in the form of mods being contacted, my reputation being bashed, and PMs from people I have been talking to for months about my post having been torn apart and received poorly.

At no point did I say that I was absolutely right. In fact, my original reply was filled with my own sense of humor, one not likely to be understood outside of New Orleans. I wrote it in high spirits, and signed back on to threats that I could be removed from the board. Frankly, I feel just as misunderstood here, simply because I took the post from a different point of view and do not offer false sympathy. Sympathy is for ducks and Florida. I live in New Orleans, where you pick your own butt up out of the river and start walking. My views will be different, I promise.


Diagnosed with Celiac on April 24, 2007

The bad:

Ovarian Cysts- unable to carry a child

Nerve damage

Severe intestinal damage

Near death experiences

The good:

A new outlook on life

A newfound respect for others who must face challenges that they did not necessarily want to face today

Healthy Cookies

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I do not feel that I am lashing out. I am sure that there is no way to really rectify the situation, since I have done my best to explain my position and it seems to have not worked.

I know you don't feel that you are lashing out! You certainly don't seem to be the sort who gets her jollies from attacking innocent newbies! But just because you don't feel like you are lashing out doesn't mean that JNBunnie doesn't feel lashed by you! Heck, I felt like I was getting lashed, and you weren't even talking to me!!!! lol

I would think that one way to rectify the situation is to say, "Whoops, sorry, guess I misunderstood you, glad you are not in denial after all!" You don't need to explain your position (although it did make for good reading!)--every one of us here has misread or misunderstood someone at one time or another!

I'm not angry with my parents, just resigned.

For someone who is not angry, just resigned, those were some pretty impressive rants on page 1! :lol:

I understand your point about "false sympathy" (pet peeve of mine, too), but the flip side of the coin might be "false tough love...."

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C'est la vie, I give up!

I'm sorry about misreading it, glad FiddleFaddle cleared it up, and hoping your mom doesn't go nuts over Quaker Oats' new "Simple Harvest" (Um... how about naming it appropriately? Let's try "Don't Eat this Harvest ", or "Simply NO!"? My poor fiance brought some home today and thought I'd like it. For some reason he thought it was gluten free :lol: ) It has "pure, simple" cracked barley, wheat, and oats ( At least we know whether these were CC'ed!)

Sneak your mom gluten-free goodies. My dad loves my brownie goop ( I have no idea why it always makes goop instead of brownies) and has no idea that it is gluten-free (because it is always gone before I can show them that I can eat it when he and my brother are around. "Chex Mix" Is easy with honey Puffins, broken rice crackers, popcorn, peanuts, and gluten-free croutons (esp. when they are made from Whole Food's gluten-free tomato herb bread) mixed with some Tony's.

And you can make great shakes from 1 cup Soymilk or lactose free milk, 1 1/2 cups ice, 1 tablespoon chocolate powder, 1/2 tablespoon sugar or splenda, and a 1/2 teaspoon vanilla extract ( but just a tiny dash if you use the real stuff!!!) Sometimes I can get that malty taste with some oat flour, but it doesn't always work. I'll let you know if I figure it out.

Currently, I am able to rework things to be sugar, gluten, and mango free. I think maybe a higher power was watching out for me when I wound up scheduled wrong and put in culinary arts freshman year instead of information technology. I can't cook an internet connection or eat a web page. :P

Of course, I can't cook these gluten free brownie mixes and get a solid, either. Just yummy hot goop.

~Destiny

(Had hot goop for dinner!)


Diagnosed with Celiac on April 24, 2007

The bad:

Ovarian Cysts- unable to carry a child

Nerve damage

Severe intestinal damage

Near death experiences

The good:

A new outlook on life

A newfound respect for others who must face challenges that they did not necessarily want to face today

Healthy Cookies

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Now you're making me hungry!!!!

My favorite brownies are in Gluten-Free Baking Classics by Annalise Roberts. I've had reasonable results with GFPAntry brownies, but they are a bit soft. I was planning on adding some almond meal and some extra chocolate chips next time, but ate up all the chocolate chips instead.

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I have actually noticed that the 'malty' taste from the oat flour depends on where it was grown. I bet a quick 3 tablespoons of a brownie mix instead of the vanilla, chocolate, and sugar would make a malty chocolate shake, though. Maybe the liquid should be chocolate, too in that case. Anywho.


Diagnosed with Celiac on April 24, 2007

The bad:

Ovarian Cysts- unable to carry a child

Nerve damage

Severe intestinal damage

Near death experiences

The good:

A new outlook on life

A newfound respect for others who must face challenges that they did not necessarily want to face today

Healthy Cookies

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Destiny, I think you have had a hard row to hoe in your young life. I am so sorry that you have to deal with celiac & everything. I find that people usually respond in the way that people responded to them in their formative years. I hope you find peace & love in your life.

your mom probably has the gluten intolerant genes. My family is double DQ1 - even a set of my grandkids are doulbe DQ1 with all kinds of health issues. My mother died of colon cancer...

Wishing you the best.

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Geeze guys, I didn't mean to start a fight. I was a little annoyed when I first read the post, but I didn't want anyone to be banned or anything. Just a misunderstanding. :(

I think my mom is coming along and will get there eventually. I talked to her about withdrawal yesteray on the phone and she said that made sense. Also, since she is avoiding most days, when she does eat it, it has more of an effect, so she's saying it may get to the point where it just isn't worth the pain to eat it, which is where I am at, albiet by a different route. My mom has never been one to be in denial, I just hope that when she actually gets her blood drawn (she's waiting till her usual regular blood draw appointment) she hasn't been avoiding too much, such that the test comes back negative just because of that. I would love for someone in the family to get a positive test just for my peace of mind cause then I would feel like I know.

I think the reason my mom has more trouble sticking with it is because she's always been a lot more of a bread eater than me. Not that I don't miss it, but it was never something I ate 3 times a day or anything. I was telling her about a good bread mix I tried, so maybe that will help. She loves to bake bread.

I'm actually going to be trying dairy free starting next week to see if some of my lingering symptoms dissapear. I think this will be just as difficult as giving up gluten, it not more. My husband is going to do it with me. I don't think that he necessarily has celiac or anything, but like half his diet at this point is milk and cereal and after reading about all this gluten/casein opoid stuff and knowing about his mental health problems like depression, insmonia, etc., I told him I thought it might help him and he agreed to try it with me. My best friend has done behavioural therapy with autistic children and she and one of her client's mothers have told me about how much it can help with mental things.

Glad to have found you all.

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Sometimes it just takes a bit, the adverse effects that your Mom is getting will hopefully encourage her to be compliant. I know that is how it worked with the others in my family. I was also a big, big bread eater before diagnosis. I could sit and finish off a whole loaf of fresh Italian bread and cheese in one sitting no problem. I gave it up all together at first because the replacements I found were so awful. However I have recently found the Kinnickinick brand. They make breads with a texture like wheat bread, the Italian is fantastic. You do need to microwave and or toast it first but you have to do that with almost all our breads anyway. They also make a fantastic pizza crust, crunchy where it should be soft and chewy like bread in the center. Everyone has their own favorites but I thought I would mention theirs in case you haven't encountered it. My DS moved out of state and he is able to order it over the net but I was able to get my local Health Food store to get it in. It sounds like you are being patient, informative and nonjudgemental with her, just what she needs. If you can get her to visit the forum that might be helpful also.

Geeze guys, I didn't mean to start a fight. I was a little annoyed when I first read the post, but I didn't want anyone to be banned or anything. Just a misunderstanding. :(

I think my mom is coming along and will get there eventually. I talked to her about withdrawal yesteray on the phone and she said that made sense. Also, since she is avoiding most days, when she does eat it, it has more of an effect, so she's saying it may get to the point where it just isn't worth the pain to eat it, which is where I am at, albiet by a different route. My mom has never been one to be in denial, I just hope that when she actually gets her blood drawn (she's waiting till her usual regular blood draw appointment) she hasn't been avoiding too much, such that the test comes back negative just because of that. I would love for someone in the family to get a positive test just for my peace of mind cause then I would feel like I know.

I think the reason my mom has more trouble sticking with it is because she's always been a lot more of a bread eater than me. Not that I don't miss it, but it was never something I ate 3 times a day or anything. I was telling her about a good bread mix I tried, so maybe that will help. She loves to bake bread.

I'm actually going to be trying dairy free starting next week to see if some of my lingering symptoms dissapear. I think this will be just as difficult as giving up gluten, it not more. My husband is going to do it with me. I don't think that he necessarily has celiac or anything, but like half his diet at this point is milk and cereal and after reading about all this gluten/casein opoid stuff and knowing about his mental health problems like depression, insmonia, etc., I told him I thought it might help him and he agreed to try it with me. My best friend has done behavioural therapy with autistic children and she and one of her client's mothers have told me about how much it can help with mental things.

Glad to have found you all.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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First, thank you for your vociferous defense of me Fiddle-Faddle, but I actually wasn't the original poster, I was merely a passerby.

Second, I did not call for anyone to be removed from the board, neither did I call for an apology. I merely stated that I considered something abusive. I said that because (DestinyLeah's) post was so clearly misunderstanding of (rainabear's) post, that it seemed it had to be intentional to me.

Example:

Rainabear: "I miss gluten, but I LOVE feeling better. The fact that an accidental glutening leads to at least 2 days of misery is enough to keep me on the straight and narrow, even though I have had no blood work or biopsy."

DestinyLeah: "Personally, I think you are in denial and trying to save yourself from a lifetime of "doing without" by coming up with excuses."

"....as lactose intolerance is often caused in Celiacs by gluten damage, it is explained by your apparent "ces't la vie" attitude towards gluten."

Perhaps I am the only one who sees a discrepancy here.

As for having to work hard to keep yourself alive being a good excuse for not apologizing for poor behavior, I have to disagree. My doctor said I was basically dying when I figured this out (on my own) and I still had to hold down a job and pay my health insurance, and rent, and debts, too. I was 19, living alone. However, you will frequently find me apologizing for not understanding something because I do it frequently. I am not saying I think you should apologize now either, since you have said that you think misunderstanding something does not warrant an apology, I'm simply disagreeing with your reasons not to.


If you're going through hell, keep going. ~Winston Churchill

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