How Long Did It Take You To Stop Hating Celiac?

[Guest thatchickali]

Okay, there is so many people on this board who have the positive outlook on Celiac, I'm sorry, but I am still more bitter than I ever have been in my life. I'm stuck in the anger part of mourning. Just curious how long it took until you started to get that happiness back, and be able to be proud to talk about it.

Sorry if this is confusing, and if your time is not on the poll answers you can add a reply.

[kbtoyssni]

I wasn't bitter or angry at all. It was such a relief to finally have an answer that I was excited to get to my new gluten-free life and start living again. I do tend to have the attitude of "well, this is how it is, no sense getting upset because there's nothing I can do about it so let's move on and enjoy what I've got" with most things in life, though.

I can imagine if someone doesn't have supportive family and friends, doesn't see immediate relief or ends up having more food intolerances, is very busy and doesn't have the time to do the research, is on a very tight budget and doesn't have the money to try all the "yucky" gluten-free foods before figuring out how to make the diet work, or has an emotional attachment to food and its role in his/her life, giving up gluten would be very hard. It's a major change, and only natural to mourn for what you've lost. Give it time - hopefully it will get much easier for you.

[Aligray]

I was SOOOO relieved to finally know why i had been so sick and to know that I had a chance to feel better. SO RELIEVED!!! I was never mad at all!

And after a couple of months of learning safe and forbidden ingredients and feeling better, everything just fell into place.

Hang in there! To me, this diagnosis is a great thing! It means u are going to feel better real soon!

Dont get me wrong tho, on days when i am sick bc i got glutened, i am miserable and hate that i could get sick anytime. But it is what it is!

Good luck!

-Ali

[mouse]

I never was angry that I had Celiac. Just thankful. When my GP finally thought of this disease, I was already mostly bedridden and dehydrated. He said later I was probably only 2 weeks away from no recovery. I have not even been angry that no one else saw this for the past 30 years of being sick. And because of the malabsorption that I had for so long, I now have so many other things wrong that have greatly impacted my life. But, I consider anger a wasted emotion that I cannot spend what energy I have on.

I wish you the best and for the many members they have also gone through what you are going through. You will get past this point and count your blessings that they found it in time. A long healthy life is ahead of you.

Hugs.

[rsm]

No anger, just relief. Finally I can do something positive to make my health better.

[cruelshoes]

I only hated it for the first 3 days, until I started to see some improvement. After suffering for 18 years, I would have done anything to feel better.

[codetalker]

I would echo all the above. It was a huge relief to know why I was so sick. The incredible improvement after going gluten free made me thankful I had something that did not need surgery, drugs, radiation, etc.

[shp2drp57]

I, too, am stuck in the mourning part but maybe not anger at the Celiac part but my families response to having Celiac. I was never prepared to handle giving up bread (which I adore) for the rest of my life and not talk about it. I do talk about it all the time, how unfair it is, how it took forever to be diagnosed, how I had to fight to get the diagnosis, how I miss gluten (does it miss me - just kidding) how I had never heard of this disease, etc. I think the hardest thing besides giving up gluten is realizing not everyone wants to hear how it makes you feel. But, I feel the only what I will get through this period of not eating gluten (and for the rest of my life) is to talk about it! By the way, I am 50 this year and just found out but I have been sick since a teenager. That is a long time to have given up things because a bathroom needed to be nearby. I think it is great that we have this site but wish there were chat rooms to talk immediatley to others about how you are feeling in real time. If you have a problem with alcohol you can go to a meeting any night of the week. If you are celiac, there is not meeting to go to if you want to eat gluten and have someone stop you. There is only you!

[sickchick]

The first year I was sick was the worst, it was as if I had to mourn the person who I use to be. Now it comes and goes. It helps to be distracted by family and friends but when I am all alone and I am feeling very alone that is the worst.

I am not gluten free yet though still waiting on my dr, hope things change

good luck

[bfarnsworth0709]

I have been very bitter that I have this stupid disease. I yell at it all the time, telling it how much I hate it and how stupid it is and why did I have to get the stupid disease. Most of the time I just want to be normal, be able to eat out with my friends and family w/out asking a 1000 questions. My family not having to "de-gluten" their house just for me to come and visit, which makes me feel like a big inconvenience, but I can't take the chance of CC when my health is concerned.

Most days, I am bitter. But I try to remind myself that things could be a lot worse, atleast I have something that is just controlled by diet and reading labels.

But it does suck, so I totally understand, and it's HARD!

[SunnyDyRain]

I was angry for about a month, but it was sporatic. I got angry at my BF for having a subway subs for lunch, i was pissed off that they were playing a papa johns commercial on tv, I was pissed that my co-workers were going out for lunch and I was sitting eating rice like the day before.

I was never really mad the the universe for giving me celiac, I was mad that people wern't caring about it and it was isolating me.

[kevieb]

i still hate this disease---and i don't have it. when my girls were diagnosed, i wished that it was me instead of them.

[dandelionmom]

I have a love/hate relationship with celiac. I am so happy that this is all that was wrong with my daughter (we were so afraid it was cancer or something else awful) and I love that she doesn't have to be on medicine or have surgery or anything scary but I HATE that she can't just be a normal kid and I hate that she gets sick if we make a teeny tiny mistake. I hope she never hates it.

[celiacgirls]

I didn't even think I had symptoms but tried the diet since my girls were going to be on it and Enterolab said I was gluten intolerant. Within 2 days, I felt so much better that I have always felt knowing I was gluten intolerant was a good thing. My children are also have much better moods and behaviour. To me, it has always been a good thing to know.

I notice people all the time who would probably benefit from the diet but who would never consider it and feel like I am the lucky one.

[mtraezme]

I agree with a lot of the others who have never hated it. I was so happy to figure out what was wrong with me that I never thought to be angry. I was focused on getting my life back.

I think growing up with my brother, who is deathly allergic to peanuts and legumes, got me somewhat prepared for being careful with food. He can die instantly if he eats one little pea or a tiny piece of peanut. Celiac is painful and has a major impact on my health and life, but I don't have to worry that a sliver of peanut may have gotten into the vanilla ice cream and can cause me sudden death. On that same note, my family is really supportive and willing to help me because they understand how severe food allergies can be.

I hope that your mourning period starts to pass so that you can enjoy the life that you do have and not always long for things you don't have.

Ezme

[FranW.]

Actually, celiac is just the next one. I have systemic lupus, and SEVERE allergies. I am allergic to aspirin which means I eat no fresh fruit or vegetables. I can eat a few fruits or vegetables if they are well cooked. I already could not eat peanuts, shellfish, nightshades, soy, or lactose. Since I was still having trouble with throat swelling, the doctor took me off gluten. Almost immediate improvement! Before, I would self inject small amounts of epinephrine to keep my throat from completely closing (my throat and tongue still stayed slightly swollen); I haven't had to give myself "a shot" for almost 3 months! Not to mention the stomach aches and "D" are much better. Sometimes I hate it, but what can you do? I eat rice, small amounts of cooked veggies, and unseasoned beef, chicken or pork. Sometimes I am very tired of the diet, but, frankly, the lupus has made me so sick at times that the diet is worth it if it helps! That said, with the holidays approaching, I am sorely going to miss mashed potatoes, gravy, stuffing, biscuits, etc. Not to mention the baked treats! Actually, now that I think about this, I am rather upset!!!

[Glutenfreefamily]

With gluten it was mixed feelings, I was so happy to have the diarrhea and joint aches stop but I was angry at my husband complaining about things like the pizza having too much sauce from my favorite pizza place. It took a few months and a lot of good recipes to get fine with it. Two years out I dont miss it at all.

Soy and Dairy are harder for me because what doesnt have gluten has either dairy or soy , not to mention Im a vegetarian and since my intestines were healing I couldnt handle corn, beans, or raw veggies. I cant eat salt or msg either. A good support system has helped me tremendously, my husband following it with me along with our daughter has made it much easier.

[i canary]

I actually laughed in relief when I was diagnosed. It was such a relief to know what was wrong with me. I've never been angry at celiac disease. Now doctors are another story. I've spent a lot of time and energy releasing my anger at the ignorant doctors who were able to figure out what was wrong with me (took 45 years).

[melmak5]

Two and a half months and still hating.

On good days I am happy that its just food that causes problems, on bad days I really wish it was something I knew more about or know how to deal with.

(My dad and sister have diabetes and I have that down pat. My hate is mostly around the lack of adequate packaging/disclosure laws and the giant learning curve of information - which seems impossible when tired and physically ill)

[babygirl1234]

i never hated celiac disease i was pleased to find out what was worng with me, it was hard to get used to, so it toke me about 6 months to get to it, and i still find it hard not to eat the things i used to eat,

[DingoGirl]

Wow, I'm surprised that so few of you who've posted weren't angry......I was FURIOUS upon diagnosis......then went into grieving (one month?) and took a full year, at least, for the anger to dissipate.....I find it a HUGE inconvenience, since I hate to cook almost more than anything.

I am no longer angry, except in very short spurts - mainly when I feel envious at the convenience others enjoy in eating. But it passes quickly...

I still think it's a pisser, and always will. However, I do remind myself frequently that there are far worse things.

[tarnalberry]

I put "one week" but I also was never angry. I wasn't relieved either, though. I never had huge symptoms, was never horridly sick, or anything like that. I think I just felt like "ok, here's another piece of data to work with, and another adaptation." There's *always* something else to adapt to in life, and while this may be a larger one if we are very accustomed to cultural norms when it comes to food, it's still doable.

[ItchyMeredith]

I was bitter and angry and hard to be around for about a month. I was never sick. I only had DH so finding out wasn't a major releif. I am fine now- 3 months later. I am thankful to find out at age 28. If I were younger I would have struggled with an identity crisis and feeling like I was missing out. If I were older I would be more concerned about the long term damage I had caused. I am thankful to know because most people on my father's side had died of digestive cancers. My diagnosis is a gift in that sense.

[ravenwoodglass]

Perhaps because I was so ill by the time I was diagnosed I was actually happy to finally know what was wrong with me. My anger and hate are reserved for the mainstream food companies that hide the stuff in so many things, soy also. We really did fine for thousands of years without having the addictive substances in everything. And also for the doctors who for years found it easier to think I just wanted to be sick, and for the FDA who fails to safeguard our food, supplements and drugs. Lax regulations and the idea that there is a 'safe' level for this in our food and drugs completely ignores the seriousness of gluten intolerance.

Hate celiac, no in my opinion celiac is nothing more than a genetic difference that has made us hypersensitive to an element in our food that should not be there in the amounts it is in the first place. I don't even consider it a disease, just an unrecognised difference.

[cyberprof]

I understand the anger and I hope none of these responses make you sad or angry.

I was totally happy for a week or two after diagnosis because I felt so much better immediately and it was a relief that it wasn't cancer or the other things I thought.

Then, the CC hit and I realized that the possibility of being a "normal" person was gone. I had to be sooo careful.

About this time I started to have pain that I never had before and the docs were no help. I had scans and then they found tumors in my kidneys and liver. Very expensive tests, and worrisome. They determined that the tumors are benign and said that they didn't know what was causing the pain. Now I realize that the pain was from CC and healing (I hope).

For a few months I was livid at docs and celiac and others eating pizza (my favorite), pasta and cake. I would feed my kids pizza or see people eating pizza and get upset.

It's mostly better now. I can smell pizza or bread and remember the good taste and even enjoy the memory without getting upset. I've always been a good cook so I can cook what I want, although I've not yet mastered a pizza!

My anger now is at food companies for "hiding" gluten and for the lack of good tests for my DS, who is still looking for a diagnosis.