59 replies to this topic

[darlindeb25]

morning maggie--learn as much as you can in here, unless you have found a very good dietician, he/she probably cant help you --so many dieticians do not have the first idea how a celiac should eat---my sister is a dietician and she has helped doctors to figure out when a patient is celiac, but she is a rarity --she has trained all the personel in her cafeteria to understand celiacs, everyone of her employees could fix a plate for a celiac- ---my mom was in the hospital in midland and my sis, dad, and i went down to their cafeteria for lunch--judy asked what they had on the menu that was gluten free and the dietician had no idea what she was talking about --judy gave her a good talking too --a 250 bed hospital and the dietician had no idea and the cross contamination issue there was ridiculous, especially being a hospital--like i said, my sister is the exception --most hospital food is bad, my sister's cafeteria has locals from town who come there and eat everyday --the food inspector eats there on a regular basis, now how good is that ---i hope you have a good experience with your dietician, just be prepared--deb

[McDougall]

5days gluten-free. Maggie I know what you mean, it is worlds easier for me to see what foods don't agree with me now. It used to be everthing made me ill so I coudn't differentate any (except dairy which made me sick right away and more noticably). I won't eat anything unless I'm 100% sure it is gluten-free right now, I have no desire to, I don't even want my cherished beer, forget it, it's poison, good tasting poison. Good luck Maggie and feel free to email me if you want to compare notes. Doing good here, feeling better and better. I am still very tired and been sleeping like crazy the last 5 days. Had a scare last night when I chugged a bunch of gatorade and didn't feel to well after, checked though and no gluten-free, just some acidity I guess. I have had this big toe pain for 15 years since I dropped a large object on it, the pain has gotten steadily worse over 15 years, there are very few shoes I can wear, nothing other than sandles for more than a few hours. The pain has subsided considerably, the best it's been in memory, very strange, I didn't see that fix coming. Sometimes I feel right now like every problem I ever had has been explained by this celiac. I've always had terrible problems healing, had terrible gum disease as a youngster that woudn't go away, my broken leg confused the doctors with it's slow healing, I get about 4 colds a year, stomache problems as a kid, ect...Still foggy as heck, that was when I first really knew I was sick about 5-6 years ago I started waking in a fog every day, feeling like I was hungover and it never went away, That foggy feeling go away eventually? The sickness was always the worst for me though that is what weared me down more than anything, sapped my will to live and that has improved leaps and bounds. Life is good.

[McDougall]

Another thing I blame the disease on is my broken leg, I broke it after a crash on a bicycle going about 10 miles an hour and slipped in mud, a minor crash, very minor. My foot got caught in the rat trap pedal and I twisted around, Femur broke 100% horizontaly and had several large splits running the whole length, also there were spiral fractures all through the knee, tibia and fibia. Doctors had no explanation for me other than to shrug, say it happens. I did have alot of pain in the leg before and likely had stress fractures in my leg (my own diagnosis) but again it seems the stress fractures can be blamed on celiac. I've been blood tested several times over the years and a couple times was prescribed iron but was never described as anemic(sp) as far as I know. Rambling again, sorry but it helps me

[FreyaUSA]

Still foggy as heck, that was when I first really knew I was sick about 5-6 years ago I started waking in a fog every day, feeling like I was hungover and it never went away, That foggy feeling go away eventually?

You know how you read things and suddenly a light bulb flashes and you go, "Aha! now I know what he means!" I've been reading about brain fog and thinking, I didn't experience this, but I lived with a constant headache for years and years that would often peek into migraines. When you said "hangover" and since I'm sitting here right now with a very mild one (shame on me) I realized this is exactly the kind of mild headache I used to just live with! So, to answer your question, YES! if you have the same thing as I did/do, this does go away. It's marvelous! The world is a brighter, clearer place, and not just because I don't feel like I have to wear sunglasses ever second I'm outside (rain or shine...people thought I was weird, but natural light always made may headaches worse.) It took a while for mine to go away, I really noticed it about 2 weeks after going gluten-free. Now, whenever I get glutened, I get a migraine then this stupid headache "fog" for 36 hours more.

I have my fingers crossed you'll feel the same way soon. Congrats on your five days, btw!

[McDougall]

Freya, that is exactly what I mean, my migranes only started a month or 2 ago, gone since gluten-free. I like your answer, Thanks.

[Maggie1956]

It is llike a light has come on! This forum is really incredible. There are so many things that we can share about, instead of all the years when we felt we were the only 'weird' person, who felt sick most of the time.

I've had the pains in the abdomen all my life, and never had any idea. Recently, over the past couple of years, my doctor has mentioned IBS. Well, hey, that is part of celiac disease.

I have brain fog all the time too. I'm pleased to know that it will clear somewhat being gluten-free. Also gum disease, muscular and bone pains and anxity/depression.

I'm convinced we have a 'broken thermostat'!!! It's gotta be. LOL I perspire profusely, then get chilled. Then, the pain comes. It's not my hormones, they've been checked, so I reckon that's another celiac disease thing too.

I thank God for the knowlege you people have gained by the great sharing here, and life experiences which we can share and compare.

It sure gives me a sense of relief having you guys around. Maggie

[tom]

Another thing I blame the disease on  . . .. . . .. ..

hehehehe i remember the realizations like this.
It can be a pretty long list.
I think the times i had a bone chipped when the docs expected to see a break were also somehow related to celiac disease, tho i haven't heard much about bonechips.

[McDougall]

Maggie, yep that broken thermostat and then the pain after, my neck and back are the worst, and in the long run the anxiety and depression have probobly been the worst for me, I feel alot less of both right now and have progressivly so the last few days, still have the hot/cold bone pain and tiredness but I have hope in time from all I'm reading it will get better. I was diagnosed with anxiety and had a horibble 6 month run on xanax about 2 years ago, I don't remember a thing from that time and I just got more anxcious. Over the last year I did alot of things to simplify my life to relieve anxiety so it became more managable but it has made me so weak and it feels very connected to my celiac right now, I feel the anxiety fading away right now. Dealing with a few day to day issues today that cause me stress I notice a big difference, I feel emotionally so much stronger and ready to deal with problems. The illness in my belly and weakness in my body would make me feel near collapse during stressful moments, the kind of stressful moments we all must encounter each day. I had a few of those daily stressful moments today and yesterday and I dealt with it, it was so much easier. The realization it wasn't all in my weak mind is soooo nice. I'm not the wuss I thought I'd become after all.

[Maggie1956]

Maggie, yep that broken thermostat and then the pain after, my neck and back are the worst, and in the long run the anxiety and depression have probobly been the worst for me, I feel alot less of both right now and have progressivly so the last few days, still have the hot/cold bone pain and tiredness but I have hope in time from all I'm reading it will get better......

    Dealing with a few day to day issues today that cause me stress I notice a big difference, I feel emotionally so much stronger and ready to deal with problems.  The illness in my belly and weakness in my body would make me feel near collapse during stressful moments, the kind of stressful moments we all must encounter each day.  I had a few of those daily stressful moments today and yesterday and I dealt with it, it was so much easier.  The realization it wasn't all in my weak mind is soooo nice.  I'm not the wuss I thought I'd become after all.

Yes McDougal,
My pain is worst in the neck and down the back as well. I get it in other places but these are the worst ones.

My doctor said that it is fibromyalgia, which it may be. I think that fibro probably goes hand in hand with celiac disease anyway.
With fibro, there are 'points' which I think are nerve ends or something...sorry, my brain is on holidays...

I have found that when you feel sick, and in pain, then the depression/anxiety gets a lot worse. I'm looking forward to getting off my meds for that, and it will happen!
Isn't it a great thing that we are all improving daily.

And....no, it isn't all in our heads! Hooray!!!
Maggie

[darlindeb25]

NEVER EVER LET ANYONE MAKE YOU FEEL IT IS ALL IN YOUR HEAD--i wish them one week in our shoes and then dare them to say, "it's all in your head"--they would all see us in a different light then deb

[McDougall]

Last night I was feeing real good and got it into my head I could eat a chunk of cheese, it was gluten-free but It didn't sit good then and now today I'm feeling pretty crappy, more like day 1 than day 6. That's it for dairy for me for a while. I guess it just didn't scare me as much knowing there was no gluten in it.

[stef_the_kicking_cuty]

Hi to everybody,

wow, i also thought, that's me. And the most exciting thing is, i already made a connection with all my symptoms and celiac, except of the parfumes and stuff. I had that, too. I just didn't make the connection. I also have problems with cigarette smoke. When i was a little girl, it was so bad, that i got my step-dad to quit smoking. I whined all the time, it was really terrible. At the end my desperation was so bad, i thought i suffocate every moment. So i took his cigarette and threw it into his drink. That was the last cigarette i remembered him smoking. Today he's glad i made him stop...lol.

Well, my husband also stopped smoking because of me. But i didn't need to make a big thing out of him smoking. I just mentioned it and then he tried to quit and didn't touch a cigarette til today. Now he sees how good i feel every day.

And the problem with the parfumes is still very bad. As little girl my mom and my grandmother went on these coffee clatch bus tours and they took me with them. And all the elder women had all these heavy parfumes. Yak, i couldn't even breeth and got terrible belly pain. But well...

What i actually wanted to say is, that i went glutenfree in july this year and about two weeks after going glutenfree i had terrible bone pain everywhere in my body. Then after a few days it was gone again and i never had it again. Then again a few weeks after THAT i broke one of my toes. Then after a few weeks it was back to normal since i had that gluten accident with Amstel light and now my toe is sore again. So don't desperate, with your bones getting better it might take a while and you also might have some bad days, when you already thought, you feel better. But don't desperate, you will get better.

But there's two other things i wanted to ask you guys. I read the things you wrote about fibro and i was wondering. Sometimes (it is very rare now after going gluten-free though) i still have that pain, that shots down from my right hip into my leg and i can't even stand on that leg anymore. It also happens, when i didn't do sport for a while or when i glutened myself accidentaly. I always suggested it's a nerve thing. Could that be a sign of fibro? I'm kind of stiff in my shoulders and back sometimes, too.

And the second thing is, that i have incredible cravings for raw meat sometimes. Especially when i have another one of my fatigue attacks. My husband was already being angry with me, because he is afraid i get food poisoning. Well, but i'm a german and in germany there are some good meals with raw meat and we actually never had that big of a problem with food poisoning from raw meat (you guys are really paranoid). Well, i can't help myself, as soon as he is not in the kitchen, i sometimes shovel that stuff raw into me. I already thought i'm a vampire or so . Could that be, because my body feels it needs iron? Has anybody else also had a problem like that?

Nice to see, you're feeling better McDougall!

Nice greetings, Stef

[YankeeDB]

A couple people asked about the Actonel I take for osteoporosis. I do have side effects from it but they are subsiding quite a bit as time goes on (on it it 4+ months now). My side effects are vivid dreams (weird one, not mentioned in the insert at all), headaches, and arthritis-like pain mostly in my hands; but the latter 2 are easily dealt with with Advil (which is gluten-free!) No nausea.

There are several drug treatments for osteoporosis--a search will uncover them for anyone interested.

Osteoporosis is found in celiacs due to malabsorption--calcium, vitamin D, phosphorous, and magnesium. Supplementing these (and other nutrients too, depending) is often a good idea, but be careful as it's possible to take too much of the fat soluble vitamins.


When I was a gluten eater I had these symptoms: extreme fatigue, steattorhea, headaches, moderately bad foot pain, numbness/tingling in hands and feet and occasional anemia. It was a B12 deficiency my doctor discovered that I researched that finally got me the celiac disease test. Before that, it was "all in my head."

I still get very definite "brain fog" from foods other than gluten so I'm working on being extra careful to avoid my problem foods. It's not fun (especially the social aspects of this) but everyone has something to deal with. I'm just grateful there is a solution!