What Is Normal Now?

[celiac2]

New to the board but have been reading since my diagnosis a month ago. I was just wondering if some of the celiac vetrans could tell me if the word normal in realation to symptoms and the body in general is the same normal you felt before having celiac. Mine seems to have blossomed after a viral infection so I clearly remember what I was like before celiac disease. But at this point it feels like my whole system has changed and it won't go back to the way it was. Are bowl movements ever "normal" again? Does your body gain and lose weight the way it used to, or is this a whole new game? And what about the mental? My fog seems better but I have extreme anxiety over health issues now. Every rash, swollen node, or health condition now is feared to be cancer. It sounds stupid I know, but maybe someone can relate. Anyway, thanks for all your postings as they have helped me over the last month. I don't feel so isolated while on the boardand now look foreward to participating and not just lurking. Thanks again. Don

[JsBaby-G]

Don,

Well from my experience I don't feel the same as before I was diagnosed. In my opinion though this is the way everybody else feels. Before we all were diagnosed we were sick, unhealthy people. I don't think the way we are now differs from what people without Celiac feel like. So I guess in that sense I feel more "normal" now. As for the preoccupation with cancer, I understand. Everytime I used to get sick I though something was seriously wrong!! You get over that. Mentally, I still suffer from the occasional pang of depression for no reason but no fog. Trust me it is better and you will feel "normal" it just takes a little while to get used to it.

Hope that helps!

[kvogt]

When I manage not to poison myself for extended periods, I feel great; otherwise, I feel no worse than I ever did. I can tell you that it's really easy to get accustomed to feeling good, so an accidental poisoning can be a real downer. Regarding mental effects, my brain works better off gluten.

[lucycampbell55]

I agree with JsBaby_G and Kvogt

I've only been gluten-free since the 2nd of Nov but I feel like I'm a new person. No more fog but still have occasional bouts of depression and anxiety for no reason. No where near as often as before.

I know this is going to sound crazy but I can now answer questions on Jeopardy. We used to watch it all the time, then it got to where my brain wouldn't work fast enough to get the answer, and I stopped watching it. Like I said I know it sounds crazy to use this example but it's the best way I can explain how much better I have gotten not just physically but mentally. Even DH gets tickled when I yell out the answer before he does. Crazy I know

I had a major weight gain before going gluten-free and since then I have lost 15 lbs. I'm looking forward to losing even more.

Lucy

[spinorita]

It is ok to feel a little paranoid, your body is going through so many changes and as you heal, different things may surface. I was relieved to see other people had anxiety & depression, I go through that too and my friends and family dont get it, so I hide it, b/c they say it's all in my head. But I dont think they realize how hard it is to stay gluten-free, and if they would like to spend each day feeling like they have food poisoning, I think it might clue them in! I was recently told that I have MS and it scared the heck out of me----and of course every ache & pain was magnified until I got an MRI and I DONT have it (at least yet ) so immediately I felt a whole lot better. Just try to remind yourself that you will have good days and bad days, maintain your health but don't obsess and soon you will have a more automatic lifestyle and wont have to be fixated on certain things. But if you have concerns about cancer--get it checked out!!!!!! Don't put that off. You will feel better mentally & physically.

[JsBaby-G]

spinorita

Just thought I'd let you know that my family and friends don't get my depression either and you know what!? That's ok, because I don't even get it. My boyfriend cannot understand how I can go from hot to cold, but even if he doesn't understand it he'll be there for me. Which is the most important thing. That's why I LOVE this site, not only are there always people here for you but they can sympathize with what your going through. It makes you realize you're not a crazy as you might think you are.

Just know I'm here.

[seeking-wholeness]

Lucy, I so totally agree about Jeopardy! I used to love to watch it, but then the brain fog took over and made it so frustrating to sit there and grope for answers! I'm doing somewhat better in that department now, but I'm not really totally "with it" again yet.

spinorita and Crystal, my family doesn't really understand my depression, either. But then, I had been wheat-free (and nearly gluten-free) for a year before I realized that GLUTEN had been CAUSING my inexplicable suicidal feelings! I think my husband (like everyone else, myself included) had been operating under the assumption that it was just a part of my personality, but he can really see the improvement now that I am totally gluten-free! The rest of my family lives out of state, though, so they haven't kept abreast of my healing process--and my mother is extremely skeptical (grrrr....). I think she would PREFER to have a daughter on antidepressants than have to "deal" with a special diet when I visit--even though she doesn't cook anymore anyway, so I'm not sure exactly what her gripe is! Maybe she just feels threatened by the way I am taking charge of my own health, instead of blaming everything on forces I can't control! It seems to be a very common reaction!

I, too, am extremely grateful that all of you are here to make me realize that I'm not completely of my rocker, no matter what anyone else says! Thanks!

[lucycampbell55]

My mood swings and depression have just about disappeared since going gluten-free. None of my family ever understood what I was going through and like others they felt that I could control it. When I was told about the disease my husband was there and I asked the Dr. if the depression and mood swings could be a result of celiac disease he immediately said yes. I looked at my husband and he had tears in his eyes. He realized that all the times I would tell him that I couldn't help it, that I was telling the truth. I still have some nights when I wake up shaking all over and worrying about something I have no reason to worry about, but no where as often as before and like you seeking_wholeness, I'm not completely there yet but I know I will be.

We always spend the holidays with our children and grandchildren and there's usually a scene caused by me feeling overpowered. But not this year, I had a total of 18 people here for Thanksgiving 10 of which were children under the age of 12 and I didn't have one episode, (as I like to call them). At Christmas it was the same thing minus 6 people. Both my children their spouses and my husband made sure to comment how much they could see the difference in me since my diagnosis and going gluten-free. And each one came to me and said they were sorry for not believing me. I thank God everyday for being able to see a light at the end of a tunnel that was dark.

Lucy

[Guest shar4]

Every time I come to this msg board, I find something that I can relate to. Since diagnosis on Halloween, I have been gluten-free, and the Dr, of course, has me on iron supplements for the anemia ( I was so anemic, the doctor was amazed that I was still functioning ). Then she suggested B12 injections. Since then there has been a tremendous improvement. My kids keep telling me that they think I may have lost my mind. I'm in such a good mood lately that I have been driving MYSELF crazy.

I am thrilled with the new changes, and that is motivation to behave myself when I am tempted to try something with gluten in it.

What really bugged me what when my husband started telling me that I had done this to myself. I was pretty hurt by that, and he no longer says it, now he watches and reads food lables. ( I think the Doctor scared the poo out of him when she was discussing the results of the endoscopy).

Have a great weekend!!!!

Sharon

[wclemens]

Don, I can certainly relate to your obsession with having cancer. My father died of colon cancer, and until I had a colonoscopy and had two polyps removed, I feared that I had it too.

After the tests showed the polyps benign I went vegan for a year, wanting to avoid any carcinogens in meat, but I was losing weight too fast, so added back protein, and was always on The Carbohydrate Addicts Diet through everything (devised by Drs. Richard and Rachel Heller, both from families with Diabetes, the same as my family).

I've had symptoms of Celiac for the past 51 years, and it took a long time to find out what it was, and that a great deal of the depression and anxiety I was experiencing were caused by the poisons I was ingesting.

After allergy testing and 3 years of shots that didn't work, many specialists and hospital stays for Asthma, many years of perplexing symptoms and abnormalities (ulcers, spastic colon, a knee cyst, etc.) I finally just went with eliminating the foods that I knew caused me problems--wheat and all other grains, all milk and dairy, egg whites and yeast.

After the scare with colon cancer I stopped all processed, canned or packaged foods and have slowly added back just a few products that I can tolerate.

I feel GREAT. I have unlimited energy and stamina, and because of what I learned on my own journey to good health, 8 months ago I was able to see that my newest little grandson was having allergic reactions to milk. He has since been diagnosed gluten sensitive and allergic to all milk and dairy. That makes any and all of the suffering I went through worthwhile! He will never have to go through that same pain that we all have.

I no longer fear cancer, because with periodic checkups and a diet that works for us we can really live, not just survive. Best wishes with your recovery. Welda

[Guest shar4]

Welda, I appreciate the enthusiasm. It is so helpful to know that there are others who felt the same way. I have a very strong history of cancer, my mother has had 2 kinds of cancer and is still plugging away.

My personal thought is that Hey!! I can live with this. I can do this. I DON'T have cancer. Life is good!! AND I'm looking forward to things being even better as I continue to heal.

However, that doesn't mean that there aren't times when I would practically trample someone to get to a piece of chocolate cake.

Keep the good news coming.

sharon

[midnightjewel40]

hey there jsbabyG

you sound just like me nobody understands how i can be depressed (get over it get on with your life, cant be all that bad )are all the things people say to me i was on antidepressents for 2 years but came off them (might have to see the doc though again) my husband doesnt understand the depression either and i get really frustrated with him sometimes anyway hang in there if you need to talk to someone im here we can compare notes to each other

jacque australia

[midnightjewel40]

hey there jsbabyG

you sound just like me nobody understands how i can be depressed (get over it get on with your life, cant be all that bad )are all the things people say to me i was on antidepressents for 2 years but came off them (might have to see the doc though again) my husband doesnt understand the depression either and i get really frustrated with him sometimes anyway hang in there if you need to talk to someone im here we can compare notes to each other

jacque australia

[irish]

Everyday I thank God I have this messageboard to go to. I too get depressed. I work nights so it very hard. I lost approximately 20 pounds and I only been diagnosed recently. I always worry that I would get diarhea at work and I would have to leave work at 3 in the morning. I would need to take public transportation home. I have no social life. I afraid to go out. Thanks for listening to me.

Loretta

[Guest jhmom]

I too have trouble going out, I usually do not leave my house until I go to the bathroom. I know this may sound weird but I have a lot of anxiety if I don't.

I have been going through this since Aug 02 and it has not got any better. I was once very active in my church but all that ended when this started, I too have NO social life.

I never realized how serious the depression can be and how many of us it affects. I am happy to know there are others out there like me and it's not all in my head.

I wonder when the depression will end? I want to have a normal life and get up and go out somewhere when I want, not have to hang around the bathroom. I want to be able to go out to eat a gluten-free meal with my family, take long trips and not have to worry if my stomach will act up.

[celiac2]

Thanks everyone for your replys. It always helps. It sounds like alot of us still have abnormal bowel habits even after going gluten-free. Does it ever return to normal or are celiacs always a little jacked up?

[jordanandnadia]

I don't know about normal per say, but my depression, anxiety, bowel movements and a lot of other things have gotten so much better in the past year, i can't even begin to tell you guys.

They had me on 4 different kinds of anti-deps and anti-anxiety pills before i was diagnosed and i haven't been on any since then, and i feel great. Still get bouts of depression though, but they seem far and few between now, so that always helps...

I hope everyone is having a great week.

~ N ~

[irish]

I get really depressed when I see my friends going out and I can't. When I do go out it is only for a short time. When I decide to go out, I usually do not eat that day because I am afraid of getting dirrehea. I figure I need to socialize so it is better to socialize then to eat. Since I work nights I only eat one meal a day that at 10:00Am. I do not eat anything till the next day. I am so happy I have this message board. Thanks for listening to me. Loretta

[SuJ]

Hi - I, too, wonder "what is normal now?" I'm new to the message board but not so new to celiac disease. My mom was diagnosed in the late 70's - what a tough time she had. No one knew ANYTHING about gluten - and there were very few gluten free products... and I'm sure we(my family) were not very supportive.

Now I have a quasi-diagnosis. My blood tests - EGA was positive - and my biopsy was" suggestive of sprue" but at the time I had had a severe reaction to some rheumatoid arthritis drugs that had destroyed my epithelial tissue both outside(my face was all blisters) and in(wicked diarrhea). I went off my gluten-free diet over Christmas and actually had very few symptoms but now yikes NOW my digestive tract is going haywire... I, too, wonder what is normal in the way of bowel movements I ALWAYS have diarrhea - whether I am gluten-free or not.

How long do I have to be gluten-free before the diarrhea stops!!? Also, I have no bloating and no dermatitis.

November was fun for me. I had surgery and needed to take Vicadan(sp?) for the pain. Since these narcotics are constipating I had very normal bowel movements... it was GLORIOUS!!

Well I am babbling - but I would like to know - does anyone become diarrhea free when they are gluten free - or am I stuck with this forever.

Can anyone relate?

Well, thanks for listening. God Bless - Su

[seeking-wholeness]

Su, how long have you been gluten-free? It can take several months for the intestines to heal, depending on the degree of damage that had been done. Also, are you dairy-free for now? Lactose intolerance is practically guaranteed in a recovering celiac, and you may even be sensitive to casein (a milk protein). I would try eliminating dairy completely for two weeks and see what happens. If the diarrhea stops, you could try taking LactAid with SMALL amounts of dairy to see if you can tolerate that.

Stacie, I can't remember if you are dairy-free, or whether you have been tested for microscopic colitis (a condition that is independent of celiac disease but triggered by the same gene). If you have been having unremitting diarrhea for almost a year and a half, something is most likely still not right!

I hope you both have a great day!

[JsBaby-G]

Jacque

I've been of the antidepressants as well. I find I only get depressed in the winter I think it's the lack of sun. I can't even understand why I get depressed, but I figure hey with all the crap I have to deal with I'm entitled to get down right b%$@#y once in awhile. I hate being dependant on meds so I'll do anything to help me through it.

[Guest jhmom]

Sarah:

I was tested through Enterolab and did not elect for the dairy testing. My stomach pain has improved but still have diarrhea, usually 1-2 times a day. Only have normal BM maybe once a month!!!

The depression and anxiety is what I am concerned with now, I guess that just takes a while to get back to normal.

Thank you

[midnightjewel40]

Hi there yes the depression is part of it too if you need to take tablet then take them they will help with things nobody knows you better than you dont feel as though you have failed (as other people will make you feel) i felt all these feelings too and still do some days i just want to curl up and be alone (most days) but i just keep going i must admit i dont stand no rubbish from anyone anymore but i am entitled to that now i have grown up children and they help me big time

there are a lot of celiac disease problems but coming here and chatting to everyone makes me feel fine i am normal hahahahahahahahahahahah (if you met me wouldnt say that) hope this helps other people who feel the same way its nice to chat to people who CAN relate

[SuJ]

To - seeking wholeness

Thanks for the advice. I haven't really stuck to the gluten-free diet very well - denial I think. So about once a month when I go out to breakfast I usually order slices of the homemade bread, etc. Also, over the holidays I went off my diet big time - denial again. Up until recently I was not that badly affected. But now I am sticking to the diet 100% and I will for several months. Generally I minimize dairy but I will follow your suggestion and drop it completely.

I'm pretty good at baking for myself and I have come up with some pretty good recipes. As long as I make sure that the pantry is full of gluten-free foods I will do fine. I lead a pretty active life(I'm a personal trainer) so I'm hungry often. Does anybody have any suggestions for good energy/protein bars - either store bought or recipes - I would love some ideas.

Feel well!!! Su J

[sadams]

Has everyone seen this study on depression and celiac disease?

https://www.celiac.com/cgi-bin/webc.cgi/st_...ml?p_prodid=144