I Know What's Wrong Now, When Will I Get Better?

[irish]

THANK GOD FOR THIS MESSAGE BOARD!!!. Before this disease I was always upbeat now I am depressessed. I was told it must be nerves. I was out of work for a week, (I work nights), I finally thought I was better but guess again I had to call my sister to pick me up from work. I get so depressed because this disease took away my social life. Sometimes I catch myself thinking there is no guy out there that would want a sick woman (I'm 38 years old) . I feel if I was already in a relationship and I was diagnose with this disease it would be easier. Thanks again Loretta

[seeking-wholeness]

Loretta, being in a relationship when you are diagnosed with celiac disease just presents a different set of issues! I even wondered at one point if my marriage would survive, there was so much angst between myself and my husband over preparing food and socializing with friends and decontaminating the kitchen and putting the kids on the gluten-free diet since they both show symptoms as well and this and that and...you get the picture. It really didn't help that I am self-diagnosed and have NO way, realistically, to be tested conventionally. (I had already been wheat-free for about a year for my breastfeeding baby's sake, so I would have had to gluten-load for testing--which would very quickly have caused the return of the suicidal feelings I had so recently conquered with the gluten-free diet!) In a way, it's a blessing that you can spend some time focusing on *your* needs, without worrying about what anyone else needs from you! And don't forget, with a prevalence of 1 in 133 people, celiac disease is bound to affect at least one desirable eligible bachelor of an appropriate age! There might even be one in your area, and he might attend support group meetings! I wish you the best of luck as you settle into your new lifestyle!

[Guest LisaB]

Loretta,

Hi, I am with you honey! I am 36 and single and have all the same feelings you do, it is especially hard when you don't look sick (I did in the end, but I didn't for a long time or at least not badly enough that makeup didn't cover it) and people have "normal" expectations of you. It would be awful, but it almost seems like it would be easier to be terribly sick looking and then they would natually be scared off! But I agree with Sarah, especially after seeing my Mother go through what she did in her marriage while being very ill, if you know what is wrong that is bad enough, but to have the person you love doubt you and blame you is pure hell. I new at 16 when I started to develope the same problems as my Mother had (and she has been everywhere for help to no avail) that I had to seriously consider never getting married, I knew what I was in for and how hard it would be on someone else and I had no hope of getting better so...

Although I never married, I did have an active social life until the last 4 years or so and then I crashed and have not had any in that time, so we are in the same boat. That is the hardest part for a social person like me (and you it sounds like). I mean your in an impossible situation, you can't handle being around people and have NO energy to do anything and yet you crave it at the same time that you don't want to be around anyone (wierd I know) and you go deeper and deeper into depression because you have no interaction! It just stinks! If you dragged yourself out to do something, it wouldn't be fun anyway, there is no solution. I am just starting to feel the mental energy coming back to be able to enjoy something, but honestly the big difference has been taking St. Johns Wort and Kava at the same time. Made a big difference for me because although I had some more energy starting to come back after being gluten-free, but there was still something missing, I had no motivation or mental energy, and was still very depressed. After taking the St Johns/Kava it flipped the switch. I have a long way to go, but I'm getting there.

Hang in there and chin up! It will get better and at least we are not doomed to fall apart further and maybe someday we can both feel free to love someone completely and invite them into your life without it being such a stressful, humiliating experience.

Lisa

[beanpotcutie21]

Hi everyone! My name is Melissa.

I just joined this forum. Everyone seems to be doing so wonderful! Everyone seems soo supportive and helpful, I was wondering if someone could give me some advice?

I was diagnosed will Celiac Disease about a month and a half ago. I felt alot better when I could stick to the diet, but now it seems like I am always making mistakes and getting sick. I TRY SO HARD. I had been sick for what seems like forever and I am definately feeling better, but I get soo frustrated when I get sick!

One of the biggest problems is that I am only 22 years old. I go to college, and since I am a music major I have 13 classes. On top of that I work anywhere from 25-35 hours a week, plus my extracurricular stuff. I'm never home and I find it really hard because I don't have alot of time to cook for myself. I have to eat on the go. Plus, I work as a waitress, so I am always around gluten-loaded foods I live in an apartment with a school mate and we have an EXTREMELY small kitchen. With a roomate around, everything gets contaminated, even after I told her to be careful- but it's not her fault, she doesn't know! On top of all this, on a college student's budget, it is breaking my bank account to buy food.

I guess what I'm asking is how do I deal with this diseas with limited time and a even more limited budget. I get so frustrated and depressed, I cry all the time. I can't even go to the movies with my boyfriend and order popcorn because I am afraid to get sick. I've given up going out to eat, I tried it a couple times and got sick every time. There is only 1 retaurant in town I can trust. Does it get any better.? Do you constsly struggle with feeling different? I always feel like I'm a pain in the butt, especailly with my friends and family, because they have to cater to me. I'm sorry to be an emotional mess, but I haven't had anyone to talk to about this...

PLEASE HELP!!!!

Thank you soo much,

Melissa

[oreyes]

Lily,

I was diagnosed with Celiac two and a half years ago after going undiagnosed since 1991 when I had a colonoscopy, which of course showed nothing. I was lactose intolerant, anemic, had arthritis flair-ups, constant diarrhea and bloating. My energy level was very low since my Hgb level dropped to 5.4 at one time (the norman for a female is 12-14). I had six blood transfussions over a period of seven years trying to get it back to normal. That gave me energy for a while until it started dropping again. Of course that was because I was not absorbing any nutrients. (the only positive thing that occured--if you could call it positive--I lost quite a bit of weight). After seeing a hemotologist and different gastroenterologist I was finally diagnosed. I could not get my iron levels up because I was unable to tolerate the oral meds. After an iron infusion I felt like a different person. I feel blessed that this can be controlled with diet only for me. No unnecessary medications or surgery and it's not life threatening if the diet is followed.

I am no loger lactose intolerant and of course the intestinal symptoms have disappeared as long as I stay gluten free. I have found many substitutes at the health food stores, including pretzels, a soy pizza and crackers, cookies and cake mixes that are really quite tasty. There are many items that can be purchased on-line through the Gluten Free Mall if you don't have a health food store near. The only thing I've not found was a decent tasting bread and I do miss an occassional sandwich and hamburger.

For you that have just been recently diagnosed, don't become too discouraged, it could be much worse. Give yourselves time to heal. As several have stated before, it's not an overnight cure. It may have taken you years to become this way and your not going to heal overnight. I'm a registered nurse and there are many things much worse than what we are experiencing.

Best of luck to all of the newly diagnosed. You can do it, especially when you start feeling the results of a new way of life.............Judy

[Guest shar4]

Melissa, I feel your pain. I am far from being a student but working full time and haveing 2 teenagers, 2 dogs, a husband and a house, presents its own set of issues. I had known, deep down inside, that something was wrong, but no one could get to the bottom of it. Everyone would tell me that I was anemic but no one would tell me why. I finally found a doctor who would LISTEN to me. She had me get some bloodwork done, but before I left the office the first time I saw her, she took my hand and turned it over and looked at it and then looked mr straight in the eye and said, "There's something wrong with you. See how pale your hand looks, compared to mine?" I just looked at her, what could I say?

I was terribly iron deficient, my level was 2. She checked for blood in the stool. Negative. Then she sent me to a Gastro, who did a Colonoscopy and an Endoscopy. She took several biopsies and they confirmed that I do indeed have Celiac Sprue, a condition that I had never heard of. BUT, believe it or not, I was so relieved to hear that it wasn't cancer, that I nearly cried.

I believed then, and I believe now, that this is, in a strange way, almost a gift, because there is something that I can do about this. I can control what I eat, I can control what I put on my body. ( OK, now you all think I am really nuts. )

Yes there are days, when I would practically rip someone apart to get some bread or a bagel, but those days, honestly are not as frequent as I had thought they would be.

Anyway, this set has been a Godsend for me. I don't know of anyone else that has this condition, so it is very helpful for me to be able to communicate with you all through this board. I'm kind of hoping that we will get a chat feature, because, as you may have noticed, I like to talk...

Sorry about the longwindedness.

Sharon

[beanpotcutie21]

Sharon-

What a positve way to look at things. That's great! you are right. As much as I curse this disease (everyday) At least I am no longer putting junk in my body. I ate so crappy before! It's funny how you say that about the hands. My friends and boyfriend used to pick on me because my hands were pale (all in good fun- of course) I never made that connection of being sick, I just thought I needed more sun

Thank you so much for such a positive outlook!!!

Melissa

[Guest LisaB]

Melissa,

I think the big thing here is to discuss the pressure your under, too much!

When I was your age, I refused to slow down and about killed myself trying to be normal and keep up with everyone. Of course, I didn't know what was wrong with me and my friends all thought I was a lazy, wimpy, whatever...so I was doing all I could to prove them wrong. If they only knew the inner strength it took and pain I endured smiling, as well as the fact that what I was accomplishing with my limitations would be like them working 20 hour days with 2 hours sleep everynight while having the flu!

My point is, let up on yourself...don't make the mistake of trying to be like everyone else until your well and you have this all under control. If you don't put this first, you won't have the strength for the other things you want to do in life. You are normal, you have a special problem that takes a little dealing with, but it won't hold you up much if you put things in the proper order. You might just have to sit down and take inventory and decide what you may be able to cut back on for right now, it is only temporary after all. Don't make the mistake I did of holding yourself up to others in comparison, they don't know what you feel like and how hard things are for you. They aren't going to make good decisions for you, you are responsible for that. You can't worry about what they think. When I was in your shoes, I thought feeling like I did was a life sentance and that year by year I was doomed to get worse and worse, that is what I had seen happen to my Mother until she was unable to get out of bed for weeks at a time and had no life at all. So, please know how fortunate you are to know now and have complete control over your future and happiness.

As far as your kitchen in your dorm room goes, your going to have to stand up for yourself a bit there I think. I know your roommate doesn't understand, but your going to have to make it clear, communcation is the key here. What is not clearly explained is not understood. If things don't change, is there anything else you can do, can you get your own room, can your parents help (or someone) to get your own place? Something, anything.

Also, you may have to consider getting a different job, some people get sick just touching gluten. How are you going to keep up with the things that are important to you if you keep getting sick from work? Do you absolutely HAVE to work? Is there any help you can get from the school if you explain your situation, there are often many avenues of help if you just ask and keep asking until you come up with some solution.

Be strong, no one can take away your person right to run your own life, no one, you always have a choice.

Lisa

[kdaviesmcg]

Filititi:

I am so glad you posted your message. I don't feel brave either.

I was initially relieved to find out that there was something wrong with me-- I won't detail everything about the physician who ignored my symptoms & told me twice, lets just wait the diarrhea, pain etc will go away-- ha! It took a trip to the ER to get any results.

Now, I am finding out just how incredibly easy is is to get gluten by accident. The long term issues are beginning to sink in.

My family does not get it either.. I was diagnosed right before Christmas which was held at my sisters. That was fun.... No, Mom, I can't have gravy or dressing or pie or biscuits or ..... you get the idea. Well, what can you have? Not much that I can see. The list the GI faxed was 6 pages of don't eat this. As far as he told me, meat, fresh fruit & vegetables. Avoid dairy for the first month.

As for work colleagues .. if one more person says" Oh, you can just use the Atkins diet like Shannon"--- I think I will run screaming out the door. I work in a library, so that is not a good idea

I also relate to the isolation and being left out. My job requires ocassional travel and I can forsee major problems coping with restaurant and hotel foods. I hate having to stand around at receptions, parties,etc and not dare eat anything.

I realize that I am fortunate that it was not cancer as that was my fear. I do know that I will learn to cope. I found a cookbook, although I have never heard of many of the ingredients-- xanthan gum?? Besides, I am no Laura Ingalls baking bread type-- a regular cake I made once could be used as a door stop

There is a health food store in town that does have a limited gluten-free section, so I won't starve. Well, apparently I won't have problems gaining too much weight

The main problem is that I can't seem to shake this incredible sense of depression and loss of a normal life. I hate this disease so much.

Please tell me it gets better...

Kathy

[judy04]

Hi Melissa, I just want to respond to your message. I have been gluten-free for only

a few months but I wanted you to know that you will begin to feel better

soon and this diet will be second nature to you.My turn in the road happened

a few weeks ago when I read a posting from Welda, who said if your not feeling

better then try eliminating other foods from your diet. I did this, I removed all dairy from my diet, which is very hard for me because I love cheese and yogurt.

I feel like this is basic training for us. We have to be strong

because we have the power to heal ourselves, we just have to learn the rules to "live" by. I did make a mistake I forgot that the Hershey candy bar that I have been enjoying actually contains " milk" chocolate!

[jmik]

The depression definitely lifts. Stick with it. I truly feel better since I have been gluten free since July.

Don't kill for a pizza, as another post mentioned - get gluten-free pizza crusts (for example I got mine at Mr Ritts gluten-free bakery in Phila) to keep in the freezer for pizza cravings.

Get a bread maker and a gluten-free breadbook or pull recipes from the web. I've enjoyed having fresh warm bread right from the maker, a treat I never had before my diagnosis! Invest in Xantham gum and guar gum and the "weird" flours. My favorite so far is the all purpose gluten-free flour - so easy to use. Keep gluten-free pancake mix on hand, and try cornmeal pancakes. Make peanut butter chocolate chip cookies - no flour needed!!

There are so many great things out there to enjoy. For me it took a long time to get better enough re:depression to muster the energy to get stocked with recipes and ingredients and feed myself. But my friends and family were GREAT and helped me out and now I enjoy cooking and baking more than I ever did before. As for social life, I feel mine hasnt changed. I just cook A LOT MORE and invite everyone over!

IT GETS BETTER!

[OntarioLisa]

Hi there,

I'm new to the boards as well. Reading the boards has helped in curing the all alone and no one nows how I feel but where do you all find the strength to start a TOTAL change of lifestyle. I'm 31 years old, have 3 young children and work 5 nights a week in a fast food restuarant. On top of being diagnosed with celiac disease, I am also very anemic, and have an underactive thyroid. Writing this makes me teary, I had never felt extremely sick growing up, just always anemic, with the occassional migraines. It never seemed to bother me. Now I am so tired that my oldest misses the school bus at least 3 times a week, and I nap with the younger two. Because you can't really see anything wrong with me, other than being tired , my husband doesn't grasp the whole change in diet I need to make for me to feel better. Did anyone else feel sorry for themselves for having to change? I know it's for my own good but it's depressing.

Thank you the opportunity to rant, even that helps.

Lisa

[Lily]

Oh yes, I felt quite sorry for myself. The same as you, other than feeling tired and sick, I look quite healthy so the doctor never really tracked it down until this year. It gets easier once you start feeling better and you know that if you eat the gluten, no matter how good it looks, you won't want to eat it because you'll remember what it felt like to be so sick. I'm still at the beginning of my diet so I'm going through the ups and downs and can't wait to feel all better, have my energy back and quit being so depressed. I've noticed the depression lifting though since I'm avoiding gluten now.

I come here often and it really helps to know you're not alone.

Here's to good health!

Blessings, Lily

[celiacfreeman]

I save alot of time

making multiple batches corn bread and gluten-free bread mixes for the bread machine

this way you only have to clean up flour and mess once instead of 20 times.

leave the yeast and wet ingredients out till your ready to cook down the road.