At A Loss

[sarahann]

I was recently diagnosed with Celiac Sprue Disease. I am at a loss for where to even begin. I meet with a dietcian this afternoon but I am still very very sick. I have some questions. How long will it take for me to heal from this? I have my days that are few and far between where I feel better than I have in years but then there are days/weeks., where I am so sick that I cant even get out of bed. From about Thursday of last week up until yesterday I didnt get out of bed. Is depression normal with this disease? My kids are always wondering why Mommy is sick...how do I explain to them that I am sick and this is a chronic disease to where I will always be sick?

I am just frusterated more than anything. I was a healthy active 23 year old up until 4 months ago when I started getting really sick. I had a mis-diagnosis at a reputable hospital here in Iowa and I never went back...I sought out a second opinion and got some answers finally. Now I am trying to cope with a lifestyle change that I dont even know where to begin with.

Any and all help would be appreciated.

Thanks.

[lauradawn]

Im sorry to hear that you have been so sick. That makes it exremely difficult to be motivated for the new dietary challenges. Im sure your dietician will help alot, in giving you good suggestions. However, keep in mind that you will learn TONS here, and get MANY recipes and suggestions that will be invaluable. There are some good gluten free cook books too. I have 1 of them, and have been very satisified with the results of the ones I have tried so far. I was dx about 2 months ago. I was at first happy to realize there was something they could finally dx me with. I was misdiagnosed for most of 10 years. Then after doing research on Celiac, I was very scared, and was exremely overwhelemed. I tired to get the basics of the diet figured out, and got all my ducks in a row....and then went shopping. The first week was probably the hardest, b/c you are starting a new way of eating that for most people is so different. However I will say that for me, and I have noticed is true for many here, you could likely notice differences within a few days or weeks. There is light at the end of the tunnel!

I do have one comment though....

How do I explan to my kids that this is a chronic disease and will always be sick?

It is true that this is a chronic and life time disease, however you CAN live a very normal and healthy life once the damage has healed. You will most likely feel like a different person.!!!

Kepp you chin up, and come here any time you need to talk. You will recieve much support.

[zippyten]

Sarahann,

Welcome. I'm sorry to hear you have been so sick, but I'm sure a lot of people will tell you the same thing -- you'll start to feel better now that you know what you have and how to manage it. With your doctor's and dietician's guidance and a gluten-free diet, you should start to heal and feel better in many ways, although how long this will take varies for each person. The time right after being diagnosed and beginning a new way of eating is hard for just about every person (read through many of these posts and you'll see many people sharing their feelings on this). But the good news is, you finally know what's wrong, and at least it is something that can be controlled and managed through diet. For me, although it was hard to change my diet, I was just so relieved to find an answer, and to find out what I had wasn't cancer, after 10 years of being sick with various symptoms.

Since you are so young yourself, your children are probably young as well. I would suggest telling them something like you have been sick lately because your body can't eat food made with gluten (or you are allergic to foods with gluten, whatever makes sense for their ages), but now that you know the reason and will not be eating those foods anymore, you are going to get better and stay better. If they are young, I wouldn't emphasize that celiac is a disease that cannot be cured and you will always have it, more that everyone's body is different and some people just cannot eat certain things or it will make them sick.

With my own kids, knowing that celiac disease is hereditary and that I was going to be having them tested as well, I was very conscious of trying to stay positive in front of them about what I was eating and what I couldn't eat. (Which is not to say I didn't have some private moments of upset alone or with my husband.) Of course, my kids are 13 and 8 so they were very tuned in to what was going on with me. But I knew that they'd pick up on my attitude and that if I complained about the diet and voiced a lot of anguish about what I could no longer eat, what would happen if they ended up having to go gluten-free also? They'd dread it, thinking it was an awful burden. I want them to see me enjoying my food and finding good stuff to eat, and not pining after what I can't have. And actually I think it's important to model this for everybody -- the last thing I want is for people to pity me all the time because I can't have an English muffin or something.

What's helped me is reading as much as I could find on celiac disease and ways of coping (& that's included this message board which has been enormously helpful), asking lots of questions of my doctor, finding good products to try and good recipes to cook, and then also seeing that I've been feeling much better lately. I hope that you notice a difference in your health very soon and that you find good ways of both coping and getting support. And many people on this board have great information and are willing and happy to answer questions.

Ellen

[Delta32]

Sarahann, I was in the same position that you are in only a few months ago.. I am 24, and only a few months ago I could do nothing but lie in bed and wonder in fear what was wrong with me, and what was going to happen. I was a perfectally normal college student, and all of a sudden I got terribly sick for no reason to where i could hardly even get up and walk around. I was seeing doctor after doctor until I seen a GI that did a complete blood panel that showed that i am intolerant to gluten. Since that day, My life has changed dramatically. I was Dx'd sometime around last october, but I don't think I've gone a complete week being 100% gluten free because of cross contamination and the other people that i live with that can't seem to keep the place free of crumbs and things, but even still, i feel so much better. I was incapacitated for about 2 years, and yesterday I actually played a game of softball with my family! physical activity is something I have been unable to do for a long time (although my muscles are paying for it today! lol). when I was first diagnosed, I had some mental health issues and had to spend some time to get treated for that and other health problems (malnutrition, neuropathy, osteopenia. etc...) I never thought that I had a chance at a normal life. I still have my days where I feel bad, but a bad day now is nowhere close to a bad day then. I know I had alot of depression and anxiety, and still do at times, but from what I've read on here, that's very normal for us celiacs. I know how hard it seems for you right now, and it will take time to heal and feel even a little better, but rest assured... If you stay off gluten, you'll be feeling better than you ever have, and you'll be doing things that you thought you'd never be able to do again.

[Delta32]

Also, in the next few months, it's important to keep an eye out for other allergy/intolerances... When I went gluten free, I would try to eat other non-specialty items which led me to find out other intolerances.. One morning I woke up and ate about 6 eggs, to this day, i think that was the most pain i'd ever been in. lol.. and try to learn about how you react to different things.. I react differently to gluten than i do to eggs, dairy and/or casein. and I'm pretty sure there is something else bothering me, but i can't put my finger on it.. so i'm going to start a food diary to see if it helps... hope my experiences help you out... It's a very difficult thing to go through...

[sarahann]

Thanks for all of the responses. I met with the dietcian today she was a wealth of information for me!!! She gave me list after list put out by various companies of what does and doesnt contain gluten. One of our local grocery stores even has a list of all name brand and store brand products that are gluten free. She said though by 2006, food manufactures are going to be required to put on the lable whether it contains gluten or not.

From the list she gave me, I have decided that I will compress it to the products that I like the most and carry it around in my purse. I am a busy person but I am willing to make the sacrafises (sp?) for this. I also bought 2 cookbooks today that are gluten free as well. I plan on sitting down with them tonight and reading through them.

My daughters are 3 and 1 1/2. I am going to say something to the doctor when I have them in for a check up to see about getting a blood test done for them to see if they are carriers or what the deal is.

The dietician also suggested I get a bone scan done for bone density since I seem to be lactose intolarant as well.

I plan on doing some extensive research on the subject during my free time. My husband and I also agreed that we should buy a seperate toaster and pretty much everything that could become cross-contaminated.

[lauradawn]

That sounds like a good plan. Im glad the dietician was able to help. I really wanted to see one at first too, but was unable.

My little boys just recently turned 2. They have some minor issues with food sensitivities, and since I have celiac disease I decided to have them tested as well. the blood work is not a big deal----( excpet for the actual draw) and for both of them it came back negative. I was relieved to know that for now. Our pediatrician said that for people with a 1st degree relative with celiac disease, the risk is 1 in 20 that you will get it. So for our children there is an exremely high risk that at some point they will get it. Our Dr recommended that they be tested no longer than every 2 years, although my plan is to do yearly.

I think having your children checked is a great idea. It's worth knowing. If they are positive you can save them from much sickness.

Within the next few weeks you will probably be a pro!!!!

[lauradawn]

Hey quick question???? Just out of curiosity...... How were you DX? through blood work, or biopsy or both????

[sarahann]

Hey quick question???? Just out of curiosity...... How were you DX? through blood work, or biopsy or both????

I had a gastroscopy/colonscopy done at first with the biospis and then I had a blood panel done and 4 of the 5 panels came back positive for celiac disease.

Here is my long long story.

I started having problems back in January...I thought I had a stomach flu of sorts....I let it go and finally in February, I was so sick that I went to Student health down at the University of Iowa campus, where I am a student. The doctor down there was of no help to me! She gave me a prescription for an anti-biotic and sent me on my way. She did a blood test for the most obvious things. I went back after 3 days because I was still incredibly ill. She extended my prescrition for the anti-biotic. I was frusterated and I came home and I cried and cried for days. I went to class but I couldnt make it through a whole day. I was so exhausted all of the time and I became depressed. My husband took me to a pyschatrist (sp) because he thought I was depressed. I convinced the pyschatrist that I wasnt depressed. I let it go some more. I vomited probably 6-8 times a day...I had constant diarrhea (I know, EWWW!!)

My mother in law came by one morning and took me to my family doctor because I was so sick that I was laying on the bathroom floor so weak that I couldnt even make it back to bed. So, she called my doctor and got me in. He actually listened to me and then weighed me...in the 3 weeks that I had been sick up, I had lost 20 pounds. My clothes where falling off me....he refered me to a GI but first he had done a barium swallow test on me. I did have signs of GERD so I got put on an acid blocker as well.

Well, I went to my appointment with the GI who set up the scopes. They did the biospis, which came back abnormal. They sent me to get a blood panel done and 4 of the 5 panels came back postive for celiac disease.

So, that is what has happened in a nut shell.

[Laura]

Wow. It sounds like you've really been through a lot. But it also sounds like you have a supportive family, who have now had a good chance (too good!) to see why it's important you don't eat gluten from now on. And the dietician you saw sounds like she knew what she was talking about, which a lot of them don't seem to. So you have two good things going for you.

I hope you've gone to your teachers and explained the situation so that they'll give you the benefit of the doubt on your grades this semester! Speaking as (sort of) a college teacher, and the child of two college teachers, this is the sort of thing that you should tell people about because there are little ways we can give you a boost in your grades if we know there was something really going on and you weren't just blowing off class.

In your first post you said you don't know how to explain to your kids that you will always be sick. Maybe in a couple months you'll come to feel like I do. I've told people that it's funny, because now that I have a name for what's "wrong" with me, I'm so much healthier than I was back when I thought I was just a normal healthy person. Because now I have an immune system!

[sarahann]

I have a professor who has a niece that has Celiac disease and she has been very helpful and understanding about my problems. I ended up dropping back to a part time status at school so I could keep up. My other professor has also been great about helping me out. I have a lot of support from my family and friends...my sister in law is a PA up at Mayo Clinic and has been sending me tons of information on it so I have reading to do for days!! I am also doing a lot of on line research as well when time permits.

There are times that I feel so alone, that I am the only one with the disease. I will admit that I do have some signs of depression so I am also going to seek the advise of my doctor again.

[Laura]

It's been mentioned in this thread and if you've been reading so much, you may have come across references to it, but from my point of view it can't be stressed enough that depression can be a symptom of celiac disease. So while you should do what needs to be done to make you ok right now, if you end up going on medication for depression I'd encourage you to wait a few months until your health starts to pick up and then see if you've stopped being depressed, too.

[mannabbe]

Sara, Many of us have recurring depression issues that are directly related to gluten ingestion - the woman who sits next to me at work is also celiac. Whenever either of us has a gluten exposure, that person is extremely depressed (i.e. on the verge of tears) for about 24 hours.

I encourage you to tell your 3 year old that you have figured out what's wrong and that you will get better. I was diagnosed when my daughter was 4, and my recovery took longer than most for reasons I won't get into in this post. When she was 6 she told me that she thought I was going to die. I still get tears in my eyes thinking about the burden my poor girl carried around with her for those 2 years

I now feel better than I have in my entire life, and I hope that you can say that in 6 months too!

Laurie

(A year after I was diagnosed, my daughter was diagnosed too)

[sarahann]

It has been a few days since i have been here...I have had some issues to work out but thanks for the advise. My 3 year old came in the bathroom the other night when I was throwing up and said "Mommy, I love you" It is so hard. I made an appointment with my GP for Monday to get set up with some depression medication. I am also going to seek some counseling.

The other night I had an issue with cross contaimination and I have been in a lot of pain since. I hope this will pass.