[googley]

I feel like I'm stuck in the grief process. And I'm back to the anger stage. I really thought that I had accepted my diagnosis and that there was nothing that was going to make it go away. But I am just so angry. And there is no one for me to be angry at. Except myself. It's my stupid body that can't work right. It's my stupid body that causes me to be excluded from social activities that involve food (which is pretty much all of them). Even when I tell my friends to include me, even if I wont be able to eat anything. It's my stupid body that can't eat most of the food at the grocery store. I walked into the small store at school and was overwhelmed by a sense of depression knowing that I couldn't eat my favorite foods. And never will be able to again. Didn't I have enough problems in my life without this?

Getting told by professors that "catering to the dietary needs of all the different students is just too complicated" Well I'm sorry, my dietary need is covered by the ADA. And I didn't ask for much. Only where you were ordering from and what you were ordering. Is that too much to ask. I wasn't asking you to change your order. Just wanting to find out if there would be anything I could eat.

Every time I travel (which is hardly ever anymore) I'm terrified of getting sick. I'm terrified of going on a trip to a conference that is 11 hours away by car and not being able to get back because I've gotten sick.

I hate this!!!!!!!!!!!!!!!!!! I hate my life!!!!!!!!!!!!!!!!! I hate that I have to think about everything that could conceivably end up in my mouth (moisturizer, sunscreen, shampoo, soap, etc.)

I thought it would be easier knowing what was wrong the many months that I waited for all the testing to be done. Because then I wouldn't have to guess anymore. But now I just want to scream. But there is no one to hear me.

I have nightmares about accidentally ingesting the wrong food. Or more tantalizing dreams where some favorite food I can eat again. But then I wake up and am back to my reality.

[shezbut]

Sorry googley,

I must have missed your diagnosis somewhere ~ so I'm trying to comprehend how restricted your diet has become, and what the effects are if you DO eat or drink something that you aren't supposed to. For instance, are we talking about Irritable Bowel Syndrome? That can be a miserable existance, until the right food & drinks are found. GERD/ aka Reflux disease? GERD can cause a lot of pain and discomfort; it can be dangerous in the esophagus. There are also steps to take to make life a little easier to deal with GERD. Trouble with the pancreas can cause a LOT of discomfort and pain. Difficulty in digesting food ~ which results in a pretty sucky diet imo, low on veggies and fruits.

As you can see from the few that I've mentioned, there are differences in diet that people must adjust to, in order to make their condition more liveable. It's something that does take adjustment. Personally, I have GERD. The tough aspect for me is accepting that I have to stay away from acidic foods ~ oranges, grapefruit, berries, tomatoes, onions, peppers, spices. It is very difficult for me to work with regular menus. I have to make changes, otherwise I'll be miserable with esophageal lesions. I have had lesions in my larynx before GERD diagnosis, and it was unbelievably painful to endure.

Does that help you feel any better?? I hope it does. You're in my thoughts & best wishes to you!

[googley]

Thanks for your support Shezbut.

I have celiac disease. I can't eat wheat, rye, barley or oats without getting GI problems (wont go into details here), stomach cramps, anxiety, depression (some of the worst depression I experience in so far a three day period), insomnia, muscle and joint pain. Along with starting to have cravings for these foods. Every time I get exposed it seems to add a new symptom to the cluster.

I'm sorry you have so many problems too. That really sucks.

[shezbut]

Thanks for the brief diagnosis & description Googley

Yeah, celiac disease is a pain in the arse! There are stores here and there (hopefully one in your area) that cater specifically to those who can't eat those things. I wonder if they're a chain? The place I'm thinking of is in Rochester, Mn. I am sure there must be stores online to shop with, but that seems like a pain.

I agree that adjusting to this disease emotionally and physically is going to take some time. It is great to finally know why ~ what is wrong ~ but it still takes time to find little things that you do like. Hopefully, you'll soon find one that kind of cures your urges for the "bad ones'. :fingerscrossed:

I'd advise you to let yourself go through the grieving process, and don't kick yourself for feeling ___(whatever). You have every right to feel these emotions. You are human.

Gentle hugs and best wishes!

[Fresia]

Googley,

I am sorry that they are not considering you in their choices when ordering things. The choices are simple and it is poor judgement on their part. I would be really angry too for such disregard. Wrong of them.

I don't have celiac's but have family that does and I have food allergies, and are things I love and are common things in everything. It is maddening having to watch all the time; I eat out very little for this reason too and am limited as to even what I can eat at home.

The anger will come and go, there is no solution to it except acceptance but it still comes and goes for me. That phase goes in and out too, all a part of the cycle.

Sending you patience and hugs, and good foods that enjoy healthily!

[Christina86]

Hi Googley,

I'm sorry about your professors - how rude!

Trying to accommodate changes in diet is hard, especially when they're so all-encompassing like celiac disease!

Accepting a new diagnosis is HARD. No doubt about it, we can cycle through the stages ninetybillion times and then again... It does get easier though.

As for your favourite foods, can you ask a nutritionist for perhaps an alternative (we have made advances in types of food you can eat in lieu of those containing gluten) that is similar that won't cause you any problems?

[googley]

Originally Posted by Christina86

As for your favourite foods, can you ask a nutritionist for perhaps an alternative (we have made advances in types of food you can eat in lieu of those containing gluten) that is similar that won't cause you any problems?

I'm kind of disappointed in nutritionists, the doctor sent me to one when I was first diagnosed, and all she did was give me a short list of foods I can eat. It was too bad her list wasn't up to date. What I really wanted to make sure was that I was getting all the nutrients I needed. At that point I knew I wasn't because all I was eating was apples and peanut butter. But she was of no help. I know I should check out another one and not judge them all by the way this one person was. It is especially hard now because I'm pretty sure my insurance coverage doesn't cover a nutritionist. (stupid university health insurance.)

[Crew]

(((((((Googley))))))) I am so sorry.... I just learned about that disease on Mystery Diagnosis. I am so sorry you are going through that. yes we will keep the fingers crossed for you our dear friend. If... there is anything you need please don't hesititate to ask???
Crew

[AmieW]

I'm so sorry. I have IBS and just had to go on a 30 day juice diet to allow my colon to heal. I get sick of not being able to eat what I love too. I love spicy foods and I can't even SNIFF cayenne pepper without getting stomach cramps!

I literally have a house full of food now that I cannot eat. I hate to give it all away, so I keep telling myself I'll just eat small quantities, or I'll cook it for someone else, or I go back into denial and tell myself that I will get better and be able to have a taco again.

It sucks, and I do understand.

[lizardlady]

Googley, I have fibro and CFS. I too go through periods of anger about both problems. Someone else said the anger seems to come and go. I agree. I have periods when I can accept the dx, then I have a flair and I'm angry again. Personally I don't think I'll ever reach total acceptance and not anger.

[DancingAlone]

dear googley,
i'm so sorry to hear about your diagnosis. i had a professor in college that had that too and had to be very careful what he ate (couldn't eat in the cafeteria--how fair is THAT??!!) and his wife always prepared his lunch.

i know you have probably done tons of research, but here is a very informative web site about celiac disease, with recipes, bread you CAN eat, a book to help, articles, newsletter, and even forums for discussion. take care. sending you good thoughts tonight. i wish you well.

http://www.celiac.com/

[Gus1234U]

aaah {{{{{{{{ Googley~!}}}}}}}}} life sucks, and then ya don't die~~~ grieving isn't a one, two , three step program, more's the bummer,, i know i grieved for 3 yrs when i realized the extent to which my body had betrayed me. that is what it feels like, right ? a betrayal by the only place you can't escape? i'm glad you posted on this, you did a lot of people some good,, and some people a lot of good~! you are always so succinct, so poignant, so moving in your posts. i'm glad to share the site with you. Gus

[notz]

((((((Googley))))))

[googley]

Thank you all so much for your support. It is a process and there are times that are harder than others. Times when I really want to be able to go out with friends and not worry about what I can eat.

Dancing- Yes, I have done research. That was one of the first websites I found. I'm a member over there too. But sometimes it is frustrating because people there just tell you to buck up and be glad you aren't sick anymore when you need to vent. Here people understand that you can be glad you aren't having symptoms, and still can be angry and have overwhelming feelings about the whole thing. I think we are all better in touch with the emotional side of things.

Gus- You are so right. It does feel like a betrayal. Having mostly come to terms with my mental illness, this felt like a betrayal by the one thing I felt like I could trust to keep going (my physical body). I'm glad others understand.

Lizardlady- Yes it is a process. You are right. I'm glad to know that I am not weird for not being able to just put this behind me once and for all.

I do have some good news. I found some really good muffins made by the company Udi. If I didn't know I would never be able to tell that they were gluten free. It is amazing to be able to eat bread products again and enjoy it. I have some of their bread in the freezer that I haven't tried yet. But that is up next.

Thank you all so much for your support. It means so much to have people understand what I am going through. At times I feel so alone, and to be able to come here and get support makes it so much easier.

You are all so wonderful.