Having A Tough Time With This

[Mayster]

I have just been diagnosed with Celiacs (October 12, 2006). I also have Eosinophilic Esophagitis,

H Pylori, Gastritis and Gall Bladder disease until the gall bladder was removed on Oct. 6th. My doctors call me "The Perfect Storm". Not only do I have Celiacs, I'm allergic to Wheat, Barley and Rye. They tell me they've never seen a patient with all these things at the same time. I am MISERABLE. I just don't know how I'm going to cope with this. I was SO sick in the hospital, at one point in serious condition and I was scared I was going to die. How do you pick yourself up after something like this? Work and little things in life seem so trivial. My head is spinning and I can't seem to get my arms around what's happened to me. I hate food. I hate to eat, I'm told to keep a food journal of everything I eat so I find it's consuming my every waking moment. Any advice?

[lonewolf]

I have just been diagnosed with Celiacs (October 12, 2006). I also have Eosinophilic Esophagitis,

H Pylori, Gastritis and Gall Bladder disease until the gall bladder was removed on Oct. 6th. My doctors call me "The Perfect Storm". Not only do I have Celiacs, I'm allergic to Wheat, Barley and Rye. They tell me they've never seen a patient with all these things at the same time. I am MISERABLE. I just don't know how I'm going to cope with this. I was SO sick in the hospital, at one point in serious condition and I was scared I was going to die. How do you pick yourself up after something like this? Work and little things in life seem so trivial. My head is spinning and I can't seem to get my arms around what's happened to me. I hate food. I hate to eat, I'm told to keep a food journal of everything I eat so I find it's consuming my every waking moment. Any advice?

Welcome to the board. I'm so sorry you've had such a rough time of it. My health problems have been quite different, but I think others have had similar problems to yours. All of us have been miserable at one point or another, so you will have empathy here. I was once at the point where I hated food and was afraid to eat. It took time, but I got past it and I'm sure it will get better for you.

I don't have much advice other than to get as much rest as possible, eat as simply as possible (fresh vegetables and meats, potatoes, rice, fruit) and read as much on here as you can. Hopefully, others will have some better advice.

[Guest cassidy]

I'm sure things are tough right now.

A couple of bright spots - the H. Pylori can be treated and the gastritis will go away. I'm sure that will make you feel much better.

When I got diagnosed with celiac I was about to have surgery for reflux that I didn't need (heartburn is due to gluten), I too had H. Pylori, I also had an amoeba, bad bacteria, almost no good bacteria and gastritis. So, I feel for you. I really hate to eat also. I'm pregnant now and I have to eat like every hour and I really, really find it difficult to eat enough food. I wish I could take a pill and never have to eat again, but we can't.

That being said, at least you have figured out what is wrong and hopefully you won't end up in the hospital again. Celiac does get easier. It really doesn't matter if you are allergic to wheat and have celiac, because you have to avoid it either way, so that won't make it more difficult.

Someone will give you a link to the newbie guide, it is very helpful. Right now I would recommend taking things slowly and eating naturally gluten-free foods. I wouldn't try eating out or getting creative at this point. If you can get yourself to where you don't gluten yourself all the time you will start to feel better physically. Then you have to deal with the mental aspects. I went through a grieving process and sometimes I am still angry that I have to deal with this. I realize other people have it worse, but other people also have it better. It takes a while to find foods that you "like" to eat and to accept what you have to deal with. It really only bothers me now in social situations when I feel left out, but I don't really think about it at home at all anymore.

Hopefully once you get all this under control you won't have to deal with anything else for a while. This board is great, so ask all your questions, and it is ok to vent when you need to. Good luck and feel better soon.

[Budew]

My heart goes out to you. I don't have all the things you do but I can empathize. I have been so sick I too felt I was dying. I am living proof things can get better. I can tell you that you are lucky you got diagnosed.

Liz gave good advice about what to eat. The fewer number of foods the better at first, is a good idea.

I keep a food log. It has really helped me find out what works and what doesn't. I also keep a log of symptoms so I can find correlations.

I was diagnosed celiac 7 years ago and did not get better, infact I got worse and worse. I had to leave my job I became completely homebound for 2 years before I had the strength to fight for help. I became a food detective. I found that celiac was not the only sensitivity. Many people have more than just celiac. Lactose is often a problem so track the dairy. Right now I question soy and corn too. I found that I react to night shade fruits and vegetables. I also react to white potato. I am also allergic to iodine ( that was a big one for me)

Even after eliminating all of this I was still sick. I finally found a doctor who suggested digestive enzymes. I have been taking them for a couple weeks. They have helped a lot. I have just discovered that cosmetics are a problem as well.

I got some great info here, and lots of sympathy. But I encourage you to read read read. gfkitchen.com has some great links. I also found that reading sites from the UK and Canada to provide helpful connections between celiac and other related conditions. Mayo Clinic is informative too.

One quote someone gave me that I now use as a mantra is

When you get to the end of your rope, tie a knot and hold on!

I'm holding on tight.

Feel free to send a (pm). Right now I am home alone all day and have plenty of time to listen.

[GFBetsy]

You came to the right place. I wish I could offer more than a welcome and a "This will be okay". You know, right now you are probably still reeling from the very idea of celiac and all the changes it will mean. But things really do get better. There are so many things you can still eat - fruits, vegetables, meats, eggs, on and on. For quite a while, I bet, you've been feeling awful every time you eat. Just getting the H. Pilori under control (antibiotics . . . if they didn't give them to you yet, ask for them. There's an antibiotic regimin expecially for getting rid of that nasty bug), your stomach will start to feel better. And eating gluten free can be overwhelming at first, but you WILL get used to it. Keeping a food journal . .. .that's is time consuming. But it will get easier as you do it, too.

And probably none of that is really terribly helpful, because you already know most of it. But I'll post it anyway, because every little bit of silver lining helps when you're feeling like the world is all clouds.

Good luck!

[SchnauzerMom]

Hi and welcome. You've come to the right place. There is a lot of good advice here and people who have been through problems similar to yours. It helps me to concentrate on the things that I can have instead of the things I can't have. I hope you feel better soon.

[mamaw]

I agree with all other posters but wanted to say Welcome & things really will get better... Use this time as a learning tool & you will be stronger in the end.

I will be praying for you

blessings

mamaw

[Mayster]

Thank you all so much. It means a great deal to hear words of comfort from people that truly understand.!!

One quote someone gave me that I now use as a mantra is

When you get to the end of your rope, tie a knot and hold on!

I'm holding on tight.

Feel free to send a (pm). Right now I am home alone all day and have plenty of time to listen.

[Susanna]

I have just been diagnosed with Celiacs (October 12, 2006). I also have Eosinophilic Esophagitis,

H Pylori, Gastritis and Gall Bladder disease until the gall bladder was removed on Oct. 6th. My doctors call me "The Perfect Storm". Not only do I have Celiacs, I'm allergic to Wheat, Barley and Rye. They tell me they've never seen a patient with all these things at the same time. I am MISERABLE. I just don't know how I'm going to cope with this. I was SO sick in the hospital, at one point in serious condition and I was scared I was going to die. How do you pick yourself up after something like this? Work and little things in life seem so trivial. My head is spinning and I can't seem to get my arms around what's happened to me. I hate food. I hate to eat, I'm told to keep a food journal of everything I eat so I find it's consuming my every waking moment. Any advice?

Oh, Mayster--what a tough time you're having--I'm so sorry. Know this: IT DOES GET BETTER! But it takes time. I was diagnosed 8 mos. ago, and the first 3 mos were the hardest, then a little better until the 6th month, then things got a LOT easier for me.

Some thoughts:

1. A hurt gut takes time (months) to heal. So, know right up front that you are on a long term project now. I have been an ICU nurse for 20 years, and I can tell you, once a gut is injured or infected, it takes lots of time to heal and get back on track, even after the offending cause has been removed. So, as you move into your new gluten-free diet, don't get discouraged if you are slow to get results. Stick with it--it will be worth it--you will feel better. I still had lots of gastrointestinal complaints for about 3-4 months after going gluten free.

2. Coping. I felt very lonely and isolated at first. Every restaurant I went to--the menu baffled me, going to friends homes was impossible, etc. So, I figured out a few treats that I COULD eat, and that I loved, and I stashed these everywhere--my car, my purse, my desk--so that anytime I was hungry and didn't know what to eat, I could have a treat on hand (Snicker bar, a banana, a Fudge Graham Zone Bar, etc.) and this helped a lot. Over time, I figured out some dishes I could make that I liked, and I always bring these with me now to luncheons at work, or potlucks at church, or dinner at a friends house, so I always have something yummy to eat--going hungry while others are eating is the worst! REstaurants--stick to very simple, safe foods at first (scrambled eggs, baked potatoes, fresh fruit).

3. It will be up to you to educate those around you about your diet--it's not up to them to figure it out on their own. Those who love you will incorporate this new requirement you have into their lives. Some will be callous and not understand. Forgive them. Provide them with articles. Figure out a gluten-free meal you can cook and invite them over.

4. The holidays will be tough this first time around--you will have to forego some of your old favorite holiday foods, so how 'bout getting going now on figuring out some new holiday favorites?

5. Grieving: Most of us grieved continuously when we first got diagnosed. When you have a loss, you grieve. This is OK. It gets better over time. During your grieving time, take care of you--you've been birthed into a new phase of your life, so treat yourself like a newborn babe and indulge in taking care of you. Give yourself permission to say no to extra projects at home, or volunteer projects you get asked to do, or anything that pulls your energy away from your healing--nurture yourself so you can heal.

Good luck--you can do this.

Susanna