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Why Can't She Have It In Moderation?
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Thank you for all the responses. Im starting to become very skeptical of Celiac's Disease and whether or not she has been misdiagnosed. Her Symptoms are basically IBS and from reading about many people symptoms she is either in the early stages or she is very lucky not to have many of the other symptoms. I think its time to get a second opinion and perhaps go for a biopsy instead of just trusting the blood test.

Please keep in mind that biopsies can have false negatives. She will need to do the diet whether the biopsies are positive or not. If you are going to go for biopsies keep her on gluten until the biopsies are done. I know this is a hard thing to face and deal with but if her blood tests are positive she needs to be on the diet. We are here to support the both of you in any way we can. Just ask any questions you need to.

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IBS is a diagnoses when the dr's can't figure out where the problems are coming from. Lots of people have been dx'd with IBS when come to find out its a gluten intolerance. Not only that but the blood tests are notorius for giving false negatives. Also, the biopsies can be negative too if the dr dosen't biopsy the right places.

I am one of these people...25 years of "ibs" with no luck figuring out the triggers. Only have those episodes now when I've consumed gluten (inadvertently, of course).

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Have you tried Gluten Free Pantry's French Bread Mix? It makes a great deep dish pizza crust or two thin ones. Even the gluten eaters I know think it's great.

It never occurred to me to take the 2 mixes and make one for a thicker crust (excuse my blonde moment ;). Thanks for the suggestion. :D

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I am one of these people...25 years of "ibs" with no luck figuring out the triggers. Only have those episodes now when I've consumed gluten (inadvertently, of course).

yup. ibs, colitis, ibs here's your pills. try to pay attention to what is making you sick (everything) and then just don't eat that :) skin problems, anemic, joint pain, no energy, strength or balance. constant fatigue. migraines, allergies, miscarriage, hospitalization (we think you have hepatitis but your blood tests came back negative...) after 25 years something finally works - my husband is ecstatic that i am so much better. don't wait for her to suffer, just eat your damb gluten :) just kidding! i still make him gluten things, or things with regular breads. it keeps me from killing him if i take out my portion of the meal before he gets near it. he tries so hard but sometimes he messes up so now we have adjusted the system. again :) it is an evolution. (ps - i still have 2 jars of regular/wheat bread flour in the pantry. waaaayyyyyyy in the back. denial is an equal opportunity player who hangs around looong after the game is over. and the game IS over :) ) i will never eat gluten on purpose ever again.

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Once again thanks for the responses. I have no Gluten Allergies, however for many years I have not eaten many wheat based products regularly. I have always believed carbohydrates are the leading cause of many health problems so I have abstained. So please stop bashing me about wanting to keep eating Gluten. I could care less, I barely eat it right now anyway. My wife however loves bread and loves kit kat's, etc. Just last night when she found out she would never be able to have a kit kat again, I dealt with a very upset young lady and promptly drove to the nearest gas station to buy as many different candies that I could that were gluten free, to console my crying wife. THIS ISN"T ABOUT ME!!!!!

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So many people on this board were misdiagnosed or got bad advice and spent years doing themselves harm. Please forgive them if they get a little emotional about the subject. :) They only want everyone to get the best information possible.

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So this is a quote from her doctor more or less " we believe you have celiac's disease. Your levels were so high that we stopped counting"

Counting what? what blood test requires an observer to continuously count, like a clock ticking, not just note down the values and the end of period of time or after a test has been complete. I'm not a doctor but that phrasing raised a red flag with me.

They did mention the specific antibodies they were counting but im not sure at this time which ones they were referring to.

Thanks again

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So many people on this board were misdiagnosed or got bad advice and spent years doing themselves harm. Please forgive them if they get a little emotional about the subject. :) They only want everyone to get the best information possible.

forgiven. it seems like a very helpful positive group.

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So this is a quote from her doctor more or less " we believe you have celiac's disease. Your levels were so high that we stopped counting"

well, that's kind of a dumb quote. I guess what he meant to say was that her antibody levels exceeded the top of the assay curve.

With regards to the meltdown over a kitkat, keep in mind that this is a loss for her. A loss of comfort food, a loss of what she thought she understood about life, a loss of confidence that the world will treat her well.

Let her go through the grieving process. Remember that women usually don't want you to fix things, they only want you to listen and understand. As she come to grips with this she'll begin to realize that there ARE good things to eat still, and comfort can be found in places other than food.

We all have managed to make it through the initial realization, and so will she. :)

And thanks for be caring enough to come here and look for answers for her.

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Remember that women usually don't want you to fix things, they only want you to listen and understand.

Thats a topic for a whole another forum, lol . However, nice it is to be reminded of. Hopefully she will start researching at get on here soon.

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Once again thanks for the responses. I have no Gluten Allergies, however for many years I have not eaten many wheat based products regularly. I have always believed carbohydrates are the leading cause of many health problems so I have abstained. So please stop bashing me about wanting to keep eating Gluten. I could care less, I barely eat it right now anyway. My wife however loves bread and loves kit kat's, etc. Just last night when she found out she would never be able to have a kit kat again, I dealt with a very upset young lady and promptly drove to the nearest gas station to buy as many different candies that I could that were gluten free, to console my crying wife. THIS ISN"T ABOUT ME!!!!!

Hi JustForJen... Don't know if you want my two cents or not...but here it is. I think its great that you're here trying to figure it all out, but Jen is the one who needs to log in here and really read, and learn, and whine and cry and laugh, and learn that it isn't punishment, its freedom! :) If/when she comes here... she will no longer be feeling sorry for herself, she'll be among friends who ALL have the same issues, and she won't feel so alone, or lost or scared. WOW... you got a LOT for two cents! :lol: Tell her to come join us... its a pretty nice and helpful bunch! B)

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Once again thanks for the responses. I have no Gluten Allergies, however for many years I have not eaten many wheat based products regularly. I have always believed carbohydrates are the leading cause of many health problems so I have abstained. So please stop bashing me about wanting to keep eating Gluten. I could care less, I barely eat it right now anyway. My wife however loves bread and loves kit kat's, etc. Just last night when she found out she would never be able to have a kit kat again, I dealt with a very upset young lady and promptly drove to the nearest gas station to buy as many different candies that I could that were gluten free, to console my crying wife. THIS ISN"T ABOUT ME!!!!!

Please do introduce her to the site so we can help her get through this. She will likely do a bit of greiving and she may also go through some withdrawl which could make her moody for a little bit. Sorry if it seems some were 'bashing' you. We have heard countless stories of folks whose loved ones didn't believe their diagnosis and some who even go so far as to sneak gluten into their celiacs food to 'prove' to them that they don't have an issue with it. Very glad to hear you are not one of them. Betty Crocker and The Gluten Free Pantry make some good gluten free cake, brownie and cookie mixes perhaps you could surprise her by baking one soon. Put a candle on it and tell her it is in celebration of the many healthy years you will share together. If you don't bake there are some really yummy, though pricey, cheesecakes and premade cakes that can be found in some stores freezer dept. With a great husband like you she will get through this early rough period.

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So this is a quote from her doctor more or less " we believe you have celiac's disease. Your levels were so high that we stopped counting"

Counting what? what blood test requires an observer to continuously count, like a clock ticking, not just note down the values and the end of period of time or after a test has been complete. I'm not a doctor but that phrasing raised a red flag with me.

They did mention the specific antibodies they were counting but im not sure at this time which ones they were referring to.

Thanks again

What that basically means is the her positive response to the antibodies was so high that it went over the upper range of the test. He didn't put that very well but the antibodies they were testing for would be the antigliadin antibodies that we produce from the reaction to gluten. Some doctors 'dumb down' their responses to folks thinking, falsely many times, that we won't understand it if they don't.

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Hi Hubby of celiac disease person,

Welcome to the forum, and great to have you here :) It's so good you're researching for her and supporting her with this, she's definitely going to need it!

I think everyone has responded already, but for your original post : She can have one of 2 reactions to occasionally eating gluten. 1 could be extreme pain/d/nausea for a few days, in which case she'll avoid it like the plague, and bake gluten-free cake. You get mixes nowadays where all you have to do is add water, oil, butter and throw it in the oven. So simple even my hubby would be able to do it ;)

The other reaction is... maybe.... nothing... BUT that doesn't mean she isn't being damaged.

I wish I could find the link, but there was a study done which shows that undiagnosed celiac disease sufferers have the same incidence of cancer (higher than the normal population), as **celiac disease sufferers that know they have celiac disease, and occasionally cheat on the diet** Edited to say, after 5 years of a strict gluten-free diet, celiac sufferers return to the normal incidence of intestinal cancer, in case that wasn't obvious :)

If her blood test is positive, she's making antibodies. It's a highly specific test, if it's positive, there's no doubt. Some doctors like to do the biopsy to see what damage there is, but no damage doesn't mean she's safe. Other doctors insist on the biopsy being positive to diagnose celiac disease, but it's an outdated view.

If she has no intestinal damage, her symptoms might be mild or even non-existent (Some celiacs are asymptomatic). But it's pretty much guaranteed if she continues eating gluten, she's going to suffer from either other auto-immune diseases down the road (Diabetes, Rheumatoid arthritis, neurological issues) - some of these are permanent damage to non-renewable organs like your pancreas, heart, neural tissue etc etc. Or she might have a higher chance of developing some intestinal lymphoma's (Not fun). Or she might get *really* lucky and just have "IBS" for the rest of her life.

But that's playing Russian Roulette with your health.

Personal story time - my tests were negative, I'd do anything for a positive, confirmed diagnosis. As it is, I went gluten free anyway, and my severe symptoms all disappeared. Cheating on the diet results in severe stomach upset, neurological issues, panic attacks etc etc. So not diagnosed, but I'm strict because the symptoms are not fun.

Lots of forumers here complain about friends/family that are diagnosed, and who occasionally cheat. So it's a controversial topic. The best thing you can do for her is to support her and encourage not to cheat on the diet, never for any reason. Good luck with the diet! :)

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My wife however loves bread and loves kit kat's, etc. Just last night when she found out she would never be able to have a kit kat again, I dealt with a very upset young lady and promptly drove to the nearest gas station to buy as many different candies that I could that were gluten free, to console my crying wife.

OMG, Kit Kats were my absolute FAVORITE candy bar before going gluten free (and dairy and soy free). When I lived in Northern Ireland during grad school, they even had mint and orange Kit Kats. Heaven! Not having them has been sad. Very very sad. I also used to bake and decorate cakes on the side. After going gluten free I finally realized why I felt so crappy after a day in the kitchen doing something I absolutely loved.

I've had so much fun trying different chocolates that have none of the forbidden ingredients and fun experimenting with new cake and bread and cookie recipes and using my non-gluten free friends as guinea pigs. For an absolutely decadent chocolate treat, I recommend Equal Exchange chocolate with almonds or Theo chocolate with orange. Namaste cake mixes are divine; their frosting is give-me-the-darn-bowl-I'm-gonna-eat-the-whole-thing-by-myself good. There are some great websites with tried and true recipes, like Elana's Pantry (elanaspantry.com) and Gluten Free Girl (glutenfreegirl). I haven't tried any of her recipes yet, but the Cake Doctor came out with a gluten free cake mix cookbook; reviews look good; she takes gluten free cake mixes, like Betty Crocker' gluten-free yellow cake, as the base for simple with easy to get ingredients but supposedly amazing desserts.

Funny enough,too, is that I used to love to eat all of the cakes and candies, especially those Kit Kats. Now, a tiny piece of gluten-free cake or a tiny square of chocolate or one cookie is satisfying, and I don't crave them so much. It's not that they don't taste as good, because I'll be gosh darned if I'll be denied my decadence in desserts. It's simply that I don't really want or need them as much. Very surprising change for me.

I wish your wife well in her healing!

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Not exactly the same as Kit Kat, but Glutino Chocolate Wafer Cookies are positively addictive.

Just sayin... B)

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Please do introduce her to the site so we can help her get through this. She will likely do a bit of greiving and she may also go through some withdrawl which could make her moody for a little bit. Sorry if it seems some were 'bashing' you. We have heard countless stories of folks whose loved ones didn't believe their diagnosis and some who even go so far as to sneak gluten into their celiacs food to 'prove' to them that they don't have an issue with it. Very glad to hear you are not one of them. Betty Crocker and The Gluten Free Pantry make some good gluten free cake, brownie and cookie mixes perhaps you could surprise her by baking one soon. Put a candle on it and tell her it is in celebration of the many healthy years you will share together. If you don't bake there are some really yummy, though pricey, cheesecakes and premade cakes that can be found in some stores freezer dept. With a great husband like you she will get through this early rough period.

Wonderful advice. Wife will be on the forums shortly when she is ready.

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Sweet, Welcome Wife and Hubby! This is the best place to be for knowledge and for support.

I know it's kind of cleche but with time the gluten free lifestyle does get easier and it's really not so bad..it could always be worse. Besides, I think it's so awesome that we can heal ourselves naturally without drugs. Just change the diet and feel better.

BTW I was a IBSer (can I patient that expression?). 9 years IBS, blah blah. I also had a test that was "out of range". So the only thing that can come from this is better health..there is no going back. B) New adventure!

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Jen's husband---you are amazing! :)

Your devotion to your wife is evident. I have a story for you; please bear with me as I am writing it out of real concern. I know it is long, but please, share it with Jen. It's the truth--if I had not lived it, I would find it hard to believe myself. I kept a journal of this bizarre ordeal and I STILL have a hard time believing it is true. I think people need to know what I call the DARK side of celiac, so they can see what toll GLUTEN takes on a body--the whole body --and not let a speck of gluten pass the lips ever again!!!

Some people's spouses abandon them when they are sick for many years with confusing and debilitating symptoms that are never explained because their blood tests are falsely negative. The good news is...Jen's test results are positive, so you KNOW what's going on. There are no false positives, that is well-researched.

I am one of the lucky ones whose husband remains a source of strength and love for me when I have been so ill and in chronic pain that it incapacitated me. I was so bad at one point, I thought I would die before anyone figured it out. I told my sister I thought someone was poisoning me because I was so sick, in pain and losing my "self" and I could not understand what was going on.

I want to tell you what happened to me; not because I want sympathy but because you both need to hear what happens when you continually ingest gluten.

I was not really healthy, in fact, I was overweight for ten years until I became gravely ill in February 2008, rapidly losing 90 lbs., massive muscle mass, my strength, my hair, my ability to read, comprehend, and articulate clearly; I walked like I was in a daze. I felt "drugged". I broke out into what I can only describe as BURNING pain from head to toe.!!! I developing anxiety so bad I could not be alone or go anywhere without holding onto his arm (I have never been shy in my life) and severe chronic pain and burning neuropathy that has left me unable to walk, stand, sit or lie down without burning pain so bad it hurts to have clothes on. I feel like I have a bad sunburn 24/7. I could not sleep some nights more than 2 hours, thrashing around in the bed in horrible pain and anguish.I had suffered gall bladder disease, inexplicable multiple miscarriages (sadly, I had no children)and an early difficult menopause that resulted in a hysterectomy at a young age.

My once sharp brain felt like it was dipped in vaseline. I struggled for words. I could not read or comprehend new information. (I used to read 3 books at a time. I was an English Professor and the trivial pursuit champ in the family :) ) I would walk into a room and wonder why I went in there. I couldn't balance our checkbook anymore. I repeated myself and I forget most of 2009-1010. I felt angry, frightened, easily startled. I was in trembling hyper-overdrive for no good reason. I had to stop swimming and going to the gym because I was in chronic, crippling pain and no one could tell me why. I had to stop driving because my reflexes suffered and my head was so "spacey"; I felt LOST.

Frankly, I thought many times "I would rather be dead than live like this". But I would not give in because I felt in my heart that SOMETHING was keeping me ill and in pain.

My husband has picked me up off the bathroom floor many times, helped me in and out of the shower when I could barely move, applied cold compresses to my head when I had migraines so horrible, I screamed in agony, and dressed me when I was too weak to lift my arms. I could keep no food in. I had stomach pains, nausea,diarrhea, or constipation so bad I couldn't breathe from the abdominal pains. I have a burning mouth and throat --it all burns--- right down to my rectum. It's not pretty. It's horrible. I could not eat; food was disgusting to me, tasted like metal or "spoiled" and I just lost it in the toilet anyway. I only wanted licorice (which I later learned is gluten-filled) or candy bars or bagels...in a short time, I dwindled down to nothing.

I thought if I changed my diet I would feel better (I had read about adrenal fatigue)so I adopted a WHOLE GRAIN diet, full of WHEAT and rye...and I got worse...

He told one doctor last year "I just want my wife back" and I thought I would die from the heartbreak I knew he felt watching his wife's body and brain function waste away. That doctor, by the way, ran a test that said I had a high antibody to soy protein, not wheat (I had gone gluten-free for a month and did not know he was going to run a test) I asked him and he ASSURED me it would not affect the outcome of the test. He was wrong. So, I continued to diligently do a rotation diet, eliminated SOY, but still ate gluten every 4 days --because he said it was okay to do so--and I lost more weight and kept going downhill. The gastro's NP snapped at me "YOU can eat gluten, You're just depressed. Take these anti-depressants" HUH?? :unsure: I threw the script in the wastebasket because I KNEW she was wrong. So much for my "second opinion" from a doctor. I saw many doctors, had MRIs, EMGs, and an EKG. They all said I was "normal"..NORMAL?? LOOK AT ME!! They said I needed to relax and do volunteer work...it was just

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My wife may disagree with you about me being amazing. At least sometimes :). Thank you for taking the time to respond, I will ask her read it.

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My wife may disagree with you about me being amazing. At least sometimes :). Thank you for taking the time to respond, I will ask her read it.

The fact that you are here tells me you are an amazing husband. I hope Jen reads IrishHeart's post, as her experience is/was a lot like mine. So much time lost and we hate to see that happen to someone else.

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You've already gotten great advice and I'm a newbie myself, so I'll just add this: I was diagnosed with celiac last month and I felt fine. I didn't even know my doctor was running the test. As you can see from my signature below, though, I'm not exactly drama free when it comes to my health. Please feel free to have your wife email me if she's looking for a buddy who is new to this. It's not always easy and I'm learning of new challenges every day - my husband and I are currently trying to decide whether or not to make the entire house gluten-free (it's hard with a 2 year-old!)- but it can be done. If she wants to talk, there are lots of people available. Good luck to both of you!

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The fact that you are here tells me you are an amazing husband. I hope Jen reads IrishHeart's post, as her experience is/was a lot like mine. So much time lost and we hate to see that happen to someone else.

Mine also. The only thing that kept me going the last 5 years before diagnosis was my children. And one of them even gave me permission to commit suicide. I would give anything to have been diagnosed when DH and IBS were my primary symptoms.

It is hard to accept celiac and it takes some adjustment but the pain that will be avoided makes it soooo very worth the trouble.

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Just another wife who thanks you for being pro-active on behalf of her health.

Look at it this way, if she were diagnosed as diabetic and had to give up sugar (and her beloved Kit-kats), you wouldn't be thinking after a month that maybe the doctor made a mistake. It is what it is.

But, truthfully, it is NOT a life sentence. I'm one of those who feels set free. While my health issues were not as severe as others here, just being free of the tummy aches and embarrassing gas and emergency trips to the bathroom make it worthwhile.

Years ago, in creative writing classes, I learned that the best writing comes when one must write creatively within limitations. I've learned that cooking creatively within limitations can create some remarkable results as well.

I have a family of four at ome right now and, aside from my son's school lunch bread, our house is gluten free. The kids pretty well don't notice the difference. Most of our meals are just naturally gluten-free, with a few substitutions when necessary (sweet rice flour and xanthan gum to thicken gravy, etc). But, the changes we've had to make have sent us on quests for new and interesting recipes. The kids love my peanut butter cookies so much I stopped making the regular ones. And who doesn't love flourless chocolate cake?

yes, it is a change, but I think that in a very short while, this will be your new normal and you both will stop grieving the lost kit-kats. ;)

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My wife may disagree with you about me being amazing. At least sometimes :). Thank you for taking the time to respond, I will ask her read it.

Hey, no one can be amazing ALL the time ;)

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