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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I'm So Bitter And Sick Of It
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41 posts in this topic

I can't freakin' stand this diet. I hate it. And I feel like acting like my 7-year-old and having a magnificent temper tantrum filled with stomping, crying, screaming, and door slamming. I figured that by the 6 month mark, I'd be more used to it, but instead, I have an even greater desire to just say, "Eff it. I'm going to eat that damn dinner roll," which I'd totally have to go out of my way for since the whole house is gluten-free.

I'm flippin' miserable. I fantasize about my next endoscopy showing no change to the villi, and finding that this whole year was just a bad nightmare of a wrong diagnosis. I think about all the things I would eat if that fantasy came true. What would I start with? Would I be able to stop myself from binging to the point of sickness?

Someone on FB posed the question about what you would do if this was your last day on earth and my second thought (after family) was FOOD and what I'd eat. (ok, maybe it was my first thought, though I don't know). And, NONE of it was gluten-free. Every day I feel the limitations of this stupid diet. Do I feel better? NO! And that might be what makes it so damn hard. I was asymptomatic when diagnosed (barring the villi). The fatigue I had is still here, and I just blame it on age and having 3 small kids.

Things just aren't getting better. I truly thought I'd get over it by now. But I see these happy gluten-free people and it just makes me more angry. Because I'm NOT happy and I don't foresee myself ever being happy about this diet.

Am I the only pissed as hell person out there? I'm sick of being so bitter about it, but I just cannot get my mind to stop thinking about the things I cannot have. Some days, I think about the possibility of getting accidentally glutened and actually being aware of it almost immediately. I think about how if that did happen, I think I just might binge "to make it worth my while."

Eh, maybe this rant will make me feel better. I just needed to get it out there. I'm just so sick of it. Sick of it all.

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You can't change having celiac.

You can change how you react to the limitations caused by the disease.

Appreciate the food that you eat for what it is - not for what it's trying to mimic.

Emotional distress can cause many symptoms as well. Perhaps some of what you're feeling is related to how upset / angry you still are over the diagnosis.

(I'm not trying to come across as heartless / uncaring. I'm with you - this sucks.)

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Appreciate the food that you eat for what it is - not for what it's trying to mimic.

THIS might be the best thing you could have said. I know it sounds really obvious, but I never really thought of it this way.

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And... I'll probably need to be reminded of it again. Maybe I should print it out and post it in my kitchen.

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What exactly are you craving that you can't have in gluten-free form? The only thing that I still crave is a croissant...since there is no gluten-free version. However, all of my other favorite things--donuts, pizza, and baguettes--have fairly good gluten-free equivalents. Do you miss French bread? Against the Grain Gourmet makes great French bread baguettes.

I have to admit that I took me about two years to stop feeling bitter about this diet, but then I did begin to appreciate what I could eat....and I no longer craved gluten. At around the 20-month mark, I did cheat from time to time, but the effects of cheating convinced me that tasting gluten just wasn't worth it. I had to be placed on intravenous iron (something that I'd never had to do previously) for several years just because I HAD to have that slice of gluten-containing pizza. Since then, there's been no more cheating, and I'm fine with the diet now.

I recently read a book that made me give up ALL grains, including white rice, as well as all sugar, potatoes, most fruits, and corn. The vivid and detailed descriptions of what these foods can do to our bodies were enough to convince me that this is the diet I will follow for life. I thought I could NEVER give up these very favorite foods of mine, but it's been a piece of cake (gluten-free, of course!). The book is, "Primal Body, Primal Mind," and it's hands-down the best book on any subject that I've ever read. If you choose to read it, it might just convince you of how destructive gluten is to our bodies and minds...and you will CHOOSE to follow this diet because, even if you don't have celiac disease, it is the diet that will maintain your good health for life. By the way, could your fatigue be due to not eating enough saturated fat? It's the most important thing to eat! Just food for thought....

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This diet was a godsend for me. I honest to god would have killed myself 19 months ago if my mother hadn't been alive. I figured my four brothers and sisters would be okay, my dear partner would be okay if I committed suicide, but my poor dear Mom would be devastated, so I didn't do what I really wanted to do. And it was all because of gluten. Profound depression.

Do I hate the diet? Nope! Love it! It saved my life in everyway imaginable. Sure, it's a pia. I miss gluten bakery items (don't even want to mention them) but there's a new world of food out there to dig into. Please try to have patience (it's hard, and then new food intolerances develop.) It took me about 18 months to really improve, even though I was strict about gluten intake, CC, etc,

You'd have to handcuff me to forcibly stick anything with gluten in it between my lips. I hope It never happens.

Could there be something else in your diet that's bugging you?

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I get ya. I was really really pissed at having Hashimotos. Dr. visits and blood draws, constant monitoring, people saying it never gets "great, just better". Oh I was pissed. At everybody. Even though knew the meds worked (to a degree) I was pissed.

Then life moved on, I started to feel bad and developed this damn rash. Then I figured out it could be worse and it had become worse.

Then, I was thrilled when it was figured out. I was so happy to stop being in pain, I welcomed it. Now I'm figuring out I'm vitamin deficient and that's probably a big part of my neurological symptoms - because I hadn't been taking my multivitamins because I was so mad at my Hashis. I may have been able to prevent some of the neurological symptoms if I'd just used common sense. Yeah, I'm kind

of mad.

And yes, I had to stop thinking of gluten-free processed food as the same as the other stuff. Because it isn't. But it is making me cook again (which I love) and I am trying new things (funny enough, processed and chemical-laced things). Enjoy the little things - like Hormel Corned Beef being labeled gluten-free!

It all works out. It would work out better if every store carried Junior Mints but hey - I can hide some in my sock drawer.

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I'm not trying to replicate things I would eat, if I didn't have my gluten intolerance. I'm discovering new things to eat. The other day I had some tuna salad that I put in Scoops. It was pretty good. I eat alot of corn tortillas. I use them like I would bread. Is it as good as bread? Not really, but it's different. My wife made some gluten free chili, I dipped my tortillas in it. It was damn tasty. I don't see my gluten free diet as restricting me, I see it moving me in different directions. Before I discovered my gluten intolerance, an allergy doctor told me that I was allergic to beef. I went 4 years without eating beef, only to discover that it wasn't true. Compared to not eating beef, not eating gluten has been easier for me. On the other hand, since I've been gluten free, we've had two birthdays around here and that means lots of cake. Did I have some? No. But I ate twice my weight in ice cream. :)

CRash

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I can't freakin' stand this diet. I hate it. And I feel like acting like my 7-year-old and having a magnificent temper tantrum filled with stomping, crying, screaming, and door slamming. I figured that by the 6 month mark, I'd be more used to it, but instead, I have an even greater desire to just say, "Eff it. I'm going to eat that damn dinner roll," which I'd totally have to go out of my way for since the whole house is gluten-free.

I'm flippin' miserable. I fantasize about my next endoscopy showing no change to the villi, and finding that this whole year was just a bad nightmare of a wrong diagnosis. I think about all the things I would eat if that fantasy came true. What would I start with? Would I be able to stop myself from binging to the point of sickness?

Someone on FB posed the question about what you would do if this was your last day on earth and my second thought (after family) was FOOD and what I'd eat. (ok, maybe it was my first thought, though I don't know). And, NONE of it was gluten-free. Every day I feel the limitations of this stupid diet. Do I feel better? NO! And that might be what makes it so damn hard. I was asymptomatic when diagnosed (barring the villi). The fatigue I had is still here, and I just blame it on age and having 3 small kids.

Things just aren't getting better. I truly thought I'd get over it by now. But I see these happy gluten-free people and it just makes me more angry. Because I'm NOT happy and I don't foresee myself ever being happy about this diet.

Am I the only pissed as hell person out there? I'm sick of being so bitter about it, but I just cannot get my mind to stop thinking about the things I cannot have. Some days, I think about the possibility of getting accidentally glutened and actually being aware of it almost immediately. I think about how if that did happen, I think I just might binge "to make it worth my while."

Eh, maybe this rant will make me feel better. I just needed to get it out there. I'm just so sick of it. Sick of it all.

You've posted something similar to this before. I'm really concerned about you. If you keep thinking about hurting yourself, please get some counseling. We all go through a process of grief and it's perfectly okay that you are angry and missing your gluten foods. However, you seem to be dwelling on what you can't have so much it is preventing you from enjoying what you CAN have. Perhaps you need to make a list of your favorite foods that were gluten-free before you even KNEW they were gluten-free. In other words, NOT gluten-free substitutes but things that just happen to be gluten-free already.

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THIS might be the best thing you could have said. I know it sounds really obvious, but I never really thought of it this way.

That is exactly how I think of it. For example, I do not think of homemade gluten-free bread as bread but merely as a vehicle for jam, peanut butter, bruschetta, whatever. Because there just is no comparison.

You know what I find hard? Not getting sick from gluten in the first place! It can be tough because I have no relief from not eating gluten. Don't get me wrong - of course I would never wish to be sick and I feel dreadfully bad for those who do. I have severe chronic pain so understand how it feels. But without incentive it can be a challenge, alright. I keep telling myself that although gluten didn't make me sick this diagnosis saved me from a potential future of misery. And it is forcing me to take stock of my life and putting more balanced/healthier things into my gut. :)

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I made a list of my favorite gluten-free foods that I had been eating before going gluten-free and that helped a lot. I think the part that sucks is that a lot of convenience is taken away when you go gluten-free but I think that when you start feeling better, it's worth it. I've only been gluten-free for a week and I've had some good days so far and some horrible days. It worries me to see that you've been gluten-free for so long and still having problems but Im hopeful that I'll be ok and you will too.

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Someone on FB posed the question about what you would do if this was your last day on earth and my second thought (after family) was FOOD and what I'd eat.

When I was a child, I used to wish I had no food allergies when I blew out my birthday cake candles. Isn't that pathetic? I didn't wish for toys, money, days off school or other kid things. The one thing in the world I wanted was a damn normal birthday cake like the other kids. I got candles stuck in rice krispie treats becasue I was wheat-free, dairy-free, chocolate-free, I-don't-remember-what-else free. They missed the celiac diagnosis because they tested me after taking me off wheat from a positive skin test. I was both mad and sad that I couldn't be like the other kids, and I'd been wheat-free for a lot longer than six months.

The anger is so normal. It's one of the five stages of grief. Denial, anger, bargaining, sorrow, acceptance. Nobody tells us we'll have to grieve this huge change in diet, but we absolutely do. I see some of the bargaining in your post too, and some sorrow mixed in. Just don't let the anger fester. If you can get some time alone, have that magnificent temper tantrum! (Just don't break anything. :P) If you just can't, this is a safe place to rant. Also try writing it out in a diary. You can burn the diary later when anger passes, and it will pass if you just let it out. Sometimes exercise helps when you're angry, like a brisk walk.

Be aware that you're grieving a major change in lifestyle. Be kind to yourself. Find things you CAN eat. You must have some favorite foods that are naturally gluten-free. Ice cream? Chocolate? Fresh summertime fruit? If you're the sort to take solace in what don't have, be grateful it's not cancer, lupus, or something else with a treatment much more horrible than a dietary change. That helps me sometimes. I'll take celiac over the terrible breast cancer a family friend just got diagnosed with.

Anyway, that's my two cents' worth. Hope there's something helpful in my rambling.

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it'll get better, trust me. I was like that for the first month then i started too see some improvement, and well any wanting for gluteny things went away.

I will say the other day i was in walmart and i was in the veggie area and glanced over at a table with halloween treats and just sighed.... I've got to find out how to replicate the frosting they use else i go insane :blink: but i figure there has to be a gluten free version of it somewhere...

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Last week I was right where you are right now. What I know is when I get gluten my spirits go in the toilet, I get so depressed. No matter what I do I cannot pull myself out of the bad mood. My body hurts on top of it and life in general just stinks, I am grouchy and know it but can't seem to change that either. My speach even gets messed up so spening time with friends is not always comfortbale as I know I am not thinking right and I sometimes wonder what they are thinking when my words don't come togetehr right or there's gaps in my sentences.

Do you find it hard not to keep repeatedly being glutened? I started looking at the labels on everything....found my cooking spray (Baker's Joy) has wheat flour. My margarita mixer has high fructose which I cannot have. My vitamins had wheat grass. Recently I started taking Lithium.....you can google it and I think it is helping the depressed moods.

Hand in there! I know at times it can be overwhelming. Stick with the diet and in time it will get easier.

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Why the f*** can't someone develop an immune suppressant drug so we can treat ourselves once in awhile, or at least not go out of our mind with worry if we suspect we might have eaten, touched, or breathed something by mistake :-(

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Zus, you are not alone. I've considered suicide.

Please, please get some help if you are thinking this. This board is a great place to rant and rave but don't let it be your only source of therapy. :(

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^WSS!

I'm so sorry that you are having an even more rough time than I am. I hope things will change once you start to feel better. I know that I have had suicidal-ish thoughts when I got myself accidentally glutened. It can really do a number on you - both mentally and physically. :(

I wish I had more positive things to say about it, but I'm obviously NOT the person to tell you how great the diet is! Regardless of how sucky it is, there ARE worse things (not that this consoles me much). Ah, eff it, I'll just shut up now because I'm not saying anything remotely helpful!

Just...

Hugs!

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Why the f*** can't someone develop an immune suppressant drug so we can treat ourselves once in awhile, or at least not go out of our mind with worry if we suspect we might have eaten, touched, or breathed something by mistake :-(

The immune - suppressing drugs that they have developed so far have proven to be extremely dangerous, because you need to have a healthy immune system to keep you from developing cancer. And they are extremely expensive and have other side effects, which means you'd be vulnerable to getting very sick if exposed to large crowds of people during cold/flu season. Your immune system is trying to protect you from something that you are not designed to eat. Better to put your efforts into safeguarding our entire food supply from cross contamination, and trying to get the FDA to pass better and not worse regulations that give industry a pass to import bad "gluten free" foods made of wheat starch, than trying to destroy your entire body's defense systems.

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Please, please get some help if you are thinking this. This board is a great place to rant and rave but don't let it be your only source of therapy. :(

I ao agree. Something this serious is far out of our scope here. We can support you and pray for you but we are ill equipped (I speak for myself).

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Why the f*** can't someone develop an immune suppressant drug so we can treat ourselves once in awhile, or at least not go out of our mind with worry if we suspect we might have eaten, touched, or breathed something by mistake :-(

Are you recently diagnosed? Depression is not unusual for us prediagnosis and some of us go through withdrawl for a bit after going gluten free which can make it worse. If you are suicidal do get some help with that. I do admit that thought crossed my mind more than once prediagnosis but fortunately I have children and pets who needed me. Those feelings do come back when I get glutened but I now know they will be shortlived. Getting some therapy helped a great deal to get me to understand that for me it was part of the gluten issue and that the feelings will pass. It isn't a sign of weakness to ask for help, it is a sign of strength. Please do ask for help if you need it. Many towns and cities have hot lines you can call as a first step.

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Why the f*** can't someone develop an immune suppressant drug so we can treat ourselves once in awhile, or at least not go out of our mind with worry if we suspect we might have eaten, touched, or breathed something by mistake :-(

They are! There is an enzyme preparation in clinical trials, plus a vaccine that just passed phase 1. (The enzyme is NOT the useless "gluten defense" DPP IV preparation by the way.) http://www.alvinepharma.com/ is the company working on the enzymes. The company working on the vaccine is ImmusanT in Cambridge.

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Yes. I am very angry. I hate the inconvenience, the texture of most gluten free products, that I'm starving, the effect this illness has on my family, the tendency to blame every symptom on celiac, the questions people ask, the nightmares I have about eating pizza on purpose because I'm sick of the diet, and most of all, the lack of support of my husband.

I was relieved when I got my diagnosis. Something I could control by diet sounded wonderful. After all, at the time, I couldn't eat more than a teaspoon of anything at a time. Then the reality started to sink in...

I'm doing better with managing my anger since I met the owner of our gluten free bakery. Thank god for her!

I have good days and bad days, and I'm still sick. But at least I can eat something, and I'm not vomiting everything up anymore.

One day at a time...

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Oh and suicide crosses my mind a lot, but I shake it off and press on. I don't want to die at my own hands.

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My heart breaks for everyone here who is feeling (or had felt) such severe depression due to their Celiac.

I just found out while visiting family in California that a distant cousin had recently been diagnosed. The first thing I thought of was contacting her to let her know that it wasn't as bad as it may at first seem, and that she can probably eat about 80% of what she is used to, and adapt maybe another 10%.

Having been gluten-free for about 3 years now, my husband and I have developed so many gluten free recipes that are part of our menu reportoire, that we don't even notice it anymore. In fact, I had dinner guests a few weeks ago who mentioned that it didn't even dawn on them that dinner was gluten-free until long after it was over... and then only because the subject came up.

There are inconveniences, and even some social issues (I hate appearing "fussy" when eating with other people or at restaurants), but the benefits of feeling healthy for the first time in my life outweigh the inconveniences. In fact, when I think of a "last meal" scenario, I usually end up wondering if having those Pillsbury biscuits would really be worth spending my last few minutes on Earth sitting on the toilet. :lol:

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