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Member Since 01 Apr 2011
Offline Last Active Mar 14 2015 10:41 PM

#938172 I Dont Really Follow The Diet Im Suposed To

Posted by on 10 January 2015 - 05:14 PM

oh no, your misunderstanding.. my mom tries to help yeah but i cant seem to follow mt correct diet mtyself. and my mom would take care of me if any of those things came up. although im allergic to all antibiotics.. lol but um, she takes care of anything thats wrong.. and i take meds for it.. i think its called digestive advantage.. but lately i have not been wanting to take it cause eating bread and not taking the meds, i go to the restroom pretty normal.. i jst want advice on how to avoid it all. it has nothing to do with my parents cause she does help me.


Digestive advantage is NOT medicine, and does not in ANY way make it safe for you to eat gluten! It is simply something that may mean you get less gassy, maybe wont get diarrhea or vomit. But nothing in this WORLD can stop your immune system from devouring your own intestines, other than NOT EATING GLUTEN.

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#938171 I Dont Really Follow The Diet Im Suposed To

Posted by on 10 January 2015 - 05:12 PM

Everyone here knows exactly what you are going through, thus everyone is being very supportive, which is great. But you need to also be told the cold, hard, very unpleasant truth- which is that it is time to take responsibility for your own health. How serious is what you are doing? Serious enough that your parents could lose custody of you for not enforcing the diet. They are screwing up big time, and they need to know it. Maybe it isn't their fault, you probably have a crap doctor who didn't explain the seriousness of the disease to them- not uncommon. Most doctors are very ill-informed. But letting you get away with eating gluten is akin to putting a gun to your head. Just because you don't go into anaphylactic shock right away, as with a peanut allergy, doesn't mean it isn't just as dangerous. And as someone else mentioned, if you don't die, you will wish you had. Celiac doesn't go away, and it doesn't get better. It destroys and it kills and for you to care more about a slice of pizza than your own life is really, really, really incredibly, impossibly, ridiculously stupid. Yes, it is HARD to have every social situation be awkward and inconvenient. You won't find anyone on here who tells you it isn't. We sit through work dinners where people wave pizza in our face and say "Just have a bite." We go to wedding receptions and drink a glass of water and maybe have a plain salad while everyone else is having wine, prime rib and wedding cake. When we go out with our friends and everyone says, "Hey, let's go get Italian!" we have a choice of speaking up and asking everyone to make their plans around US, or saying nothing and watching everyone else dig in. When we do go to restaurants with gluten free food, we have to grill every cook and server and pray they don't accidentally or intentionally gluten us. And we see the eye rolls when we say we have to be gluten free- and it hurts. Celiac sucks and it isn't fair. not one bit. But either is cancer. Or diabetes. Or multiple sclerosis. or lupus. Or having to have your intestines cut out because you couldn't resist a slice of pizza when you were a teenager, so now you have to wear a colostomy bag. In case you don't know what that is, it is a bag that holds your own poop. Great for the social life- "Sure I will come to the party. You don't mind that I have a sack of feces with me, right?" Well dear, if you keep doing what you are doing, life is going to get a whole lot more unfair than it is now, because you have all of those things and MORE in your future. Am I being mean? No. Am I trying to scare you? You bet I am. I want to save your life. I am telling you the same thing I told my own kids when they were diagnosed at 6 and 10. You don't get a choice in this. You don't get to talk yourself into cheating. you don't get to make excuses for why you can't do it. You don't get to say it is too hard. It isn't an option. You do it or you die. Plain and simple.


Gluten is just FOOD. It isn't your life. Your life is about being 13 and having decades ahead of you to enjoy. Your life is your friends and your family now, and the ones you will have in the future. Your life is that you will probably have the chance to look into the face of your own beautiful child someday- unless you keep eating gluten. celiac kills fertility, and it causes miscarriages. Not always, but enough that you should be worried. And once the damage is done- it is done. Do you want to tell your brand new husband one day that you gave up the chance to have children because you wanted pizza more? I doubt it.


Your parents aren't doing their job- they are failing YOU. But, you aren't a little kid- if they wont take responsibility, then you HAVE to. Show them these posts. Ask them to lurk around this forum and read the horror stories from people like me who spent most of their lives undiagnosed and suffered dearly for it. They need to understand, and most importantly YOU need to understand, that this is life or death. For you, this is not a "diet." This is medication, and you have to take it for the rest of your life. It isn't going away and it is unlikely they will ever develop an actual cure. So, it is time you accept it. You are celiac- now own it.There is a forum for teenagers here- spend some time there- you aren't alone. Please, read as much as you can about celiac. To succeed at this, you must be knowledgeable. You can't just buy gluten-free products at the store and think you are good. You have to learn about cross contamination, how to keep your home safe, and how to stay safe when you aren't at home. A crumb so small you can't even see it, is all it takes for your immune system to decide to start ripping up your intestines- whether you feel it or not. 


Now, before you get completely depressed, I can say with all honesty, it will get easier. After the first few weeks, the cravings will let up. You will still fantasize about eating a real donut from time to time- but it wont be the torture it is now. You will learn what you can and can't have, and you will learn how to plan ahead. You will learn to make gluten free cake that your friends will beg you for. You will learn that even though gluten free pizza is never going to be regular pizza, it can still be pretty darn good. Most importantly, you will learn that once YOU start taking it seriously, your friends and family will too. Your real friends will make special effort for you, like making sure they have gluten free snacks at their parties, asking ahead of time about what restaurants you can eat at, and even making special gluten free things for you. Because they care, just like you would care about one of them if they had a serious disease. So no more can't. Only MUST, from here on out.

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#935611 Should I Keep Pursuing Celiac Diagnosis?

Posted by on 25 November 2014 - 11:27 PM

Forgot to say, hold onto your gallbladder a bit longer. Celiac can cause the gallbladder to malfunction. I had mine out after the HIDA scan said it was only functioning at 10%. However, this "attack" happened two days after a bad glutening. When they removed the gallbladder it was pink and healthy, showed mild inflammation was all. (at which point, why the heck didn't they leave it alone I wonder?!) Anyway, there may be other things that are messing with the gallbladder, and I discovered life without one just starts a road to a whole new set of problems worse than the original.
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#913588 Say You Have Celiac Without Dx

Posted by on 22 April 2014 - 10:32 PM

My two cents: If you are going to call yourselves a celiac you follow these rules:

#1 Never cheat. Not a tiny bit or bite or just this once...because if you do, someone is going to tell me that "so and so is celiac and they can do it..."

#2 Celiac is forever- gluten intolerance may get better. Are you prepared to eat this way the rest of your life? Because if you aren't, someone will tell me "So and so used to have that and thy got better/ grew out of it/ it went away/ doctor was wrong maybe yours is too..."

#3 You take the same ridiculous precautions against cross contamination that we do. Because if you let mom/friend/restaurant pick off the crutons or use the same utensils/cutting board/toaster etc....then someone will tell me that I am being ridiculous/ extreme/ hypochondriac.

I do not mind people who have a genuine serious problem with gluten calling themselves Celiac...because you probably are. We all know the problems with getting a proper dx.

However people who feel bloaty and fatty so they decide to give up gluten.
.for now...or until their skin clears up/ lose weight/ get their energy back...when THOSE people say they are celiac it really rips me. All that I want is for the people who come in contact with my or my celiac kids' food, to understand that it is deadly serious. Because for us, it is.

Celiacs don't have "willpower" or "commitment." We simply have no other choice..

If that is true for you as well, then by all means, dx yourself and be at peace with that.
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#877312 Have You Been Told It Is All In Your Head?

Posted by on 29 June 2013 - 11:05 AM

Just one thought to bring to your attention, since you are only recently gluten free and probaBly still "learning the ropes".... is it possible the foods you are reacting to are cross contaminated with gluten? Watermelon gets cut on a cutting board- did you buy a new one yet? Onion rings may be made in the same fryer as other gluteny ones, etc....probably you already know this, but just wanted to make you aware in case you weren't.

Multiple sensitivities are nott uncommon in the beginning- I think our immune system must go a bit bonkers when we take gluten away. For a lot of people things calm down a bit after a few months. It does make it difficult to know you are doing the right thing though when it seems like no matter what you eat, you end up feeling awful! Hang in there, it gets easier.
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#828992 How Much Gluten, For How Long, Must You Eat Before Testing?

Posted by on 11 October 2012 - 10:02 AM

Tom, depending on the extent of the damage, a week or two could make the difference between a positive or negative result. For instance, if the OP has only mild villous blunting, a week or two could make the villi appear normal. After all, the intestinal lining renews itself every three days. Now, if the OP has total villous atrophy, likely a week or two would make no difference. But since they have no way of knowing the extent of the damage (if any) all precautions should be taken to avoid a false negative biopsy.
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#827630 Been Called In By Doc Re Bloods

Posted by on 05 October 2012 - 07:21 AM

The blood tests are very reliable, howver, most doctors won't give you an "official" diagnosis without a biopsy. As was mentioned above, biopsies can easily miss celiac, so whether you get an "official" diagnosis or not, trust the bloodwork. False positives are almost unheard of.

That said, in the UK you may be eligible for subsidized gluten free food, for which you would need an official celiac diagnosis. So be sure to find out before deciding to opt out of the biopsy.

Also it is critically important that you do NOT go gluten free until after the endoscopy. Biopsies look for damage, which can heal quickly on the gluten free diet.

Welcome to the forum, you will learn a lot here.
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#827078 Outgrowing Celiac

Posted by on 03 October 2012 - 05:04 AM

Exactly. I was one of those who had several periods of "remission" throughout my teenage and young adult years. I had been told by doctors that I had outgrown my "wheat allergy" and since it didn't make me sick anymore I believed them. But celiac stays forever, sometimes quietly lurking, waiting for the next illness or stressful event to make it active again. It is frustrating when you talk to people who swear they or their children outgrew it. I simply tell them that doctors only recently learned that the disease never actually goes away, even when it seems dormant, and suggest they look into some recent research. Its pointles to send them to thei doctors- few of their doctors would even recognize the fact.
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#826698 I Believed

Posted by on 01 October 2012 - 05:58 PM

I believed I had some weird, unidentifiable disease that would ultimately kill me. I believed I was slowly dying. I believed I would never feel better. So glad I was wrong!
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#826185 Gluten Sensitivity Or Celiac

Posted by on 29 September 2012 - 03:35 AM

I would not consider her chance of celiac small at all. She has the genes. She has symptomms. She has a positive response to a gluten-free diet. She is a celiac.

Blood tests in young children are not great at catching celiac disease (even worse when they don't run a full panel!)

It is probably the rice cakes- guessing they were cc with oats, which would not have to be labeled. Most oats are cc with wheat.

As for PF Changs...could be anything. Sadly, the risk with eating out is a big one, and those who have severe reactions like your daughter often opt to just stop taking that risk!
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#825151 So Exasperated With Lazy People...

Posted by on 23 September 2012 - 08:22 PM

And if you don't know "what cutting dairy out will do"...well I have to ask,"what rock have you been hiding under?!" Gluten and casein are the two most inflammatory foods there are, and are responsible for a myriad of health issues, for more people than just celiacs!
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#825004 Blood Test Results

Posted by on 22 September 2012 - 07:33 PM

Actually, the stats you quoted for the DGP were for the older test. The new ones have something like 99% specificity.

For your sake, I hope you are right, and this all goes away. But I wouldn't count on it.
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#824875 Blood Test Results

Posted by on 22 September 2012 - 07:31 AM

Also wanted to add...in regard to blood tests. The only tests my doc ran were the TTG IGG and TTG IGA. The IGG test was 6, a weak positive (less than 4 was normal) the IGA test was negative. Yet when I had my endoscopy the damage was so severe it was visible to the naked eye- dr dx me on the spot and said it was clear I had celiac for many years. Biopsy showed total villous atrophy.

Do not let your doctors tell you that you have to be highly positive to have celiac! Positive is positive. It is sort of like being a "little bit pregnant"!
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#824874 Blood Test Results

Posted by on 22 September 2012 - 07:23 AM

I know you don't want this- none of us did either. The reason everyone is being so insistent is because we have all "been there, done that." Yes, you would think a GI who specializes in diseases of the gut would know what he is talking about- but the truth is, few do. There is a lot of relatively new research on Celiac Disease that the vast majority of docs are in the dark about. Celiac isn't profitable. There is no pill they can prescribe. Therefore, they aren't being educated about the latest info by pharmaceutical reps. They just don't know. Those of us who have suffered have scoured every bit of info available...we KNOW.

Yes, your ttg could be elevated because of inflammation- possibly. But the DGP? Nope. Gliadin IS gluten. Your body is making antibodies against gluten. Period. If you can't accept that, get the EMA- I bet it is positive too.

As for feeling better when you eat gluten, that is typical. Many of us, myself included, craved gluten, and felt sick when we didn't eat it. Gluten has an opiod effect, just like a heroin addict feels better when they take a hit, it doesn't mean they need heroin, or that it isn't bad for them. I never felt sick after eating gluten- but I felt crappy fatigued all the time, and I had bouts of "IBS" type symptoms. I was only tested because my son and daughter were diagnosed. And I found out the reason I felt like death all the time. And now I feel pretty darn great.

None of us would wish celiac on you. But we can see pretty clearly what many can't, simply because of experience. In a perfect world, you could rely on your doctor totally to give you the best advice. But you are hearing from people who have been misled and failed by those same doctors, for years and years, before FINALLY finding out what the problem was. I hope you will hear what we are telling you.
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#824555 Transglutaminase Iga Ab - What Test Is This?

Posted by on 20 September 2012 - 11:04 AM

And colonoscopies are big money makers for docs and not that much value. Do some research- it soured me on them!
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