Looking for anyone who knows about Celiac/gluten free diets. I have no one to turn to. My doctors don't even know much/anything about it. It seems to be such an "unknown" disease.

I've just recently started the 100% gluten free diet about 10 days ago.

I am having difficulties with my new diet. I've started my gluten free diet, but I'm still getting attacks. Everything I've eaten has been 100% gluten free; I've even called each manufacturing company just to make sure every time I eat something. I've recently had an attack and I don't know where it came from.

Should I also stay away from soy, lactose, alcohol, and additives, even if they are gluten free? Are there certain gluten free foods that will still irritate my digestive system?

Maybe you could answer a question for me . . . I absolutely did NOT cheat on my gluten free diet, but I still got VERY, very ill on the 5th day. I do confess I did have some Vodka on the 3rd/4th day, but I thought that was gluten free; I even called the manufaturing company on the back of the bottle. Does my body have to heal before I can introduce certain, more abrasive "gulten free foods"? I thought I was just sensitive to the gluten in things, but I thought maybe my damamged intestines couldn't handle certain foods, even though the food really is still gluten free? I can't figure out why I had an "attack".

And my "attacks" keep me completely imobilized and bed ridden for days/weeks/months at a time. I will do ANYTHING to get back to my life again.

Could you please tell me what symptoms you experience when you have an attack? My doctor has tested me for food sensitivities and oats, wheat, and barley were high. She suggested I follow a "gluten-free diet for a few weeks to see if makes my symptoms better. Thanks

These are my symtoms . . . and have been my CONSTANT symptoms for the last 7 months . . . life is more than rough . . .

HEAD SYMPTOMS ARE THE WORST:

Dizziness
Fullness
Pressure
Throbbing
Feeling as if my head will colapse
Feeling as if my head will explode
Unexplainable, severely debilitating vertigo
Feeling as if my head is full of poison
Unable to hold my head up without support
Difficult to move my head
Difficult to move my eyes

Eye Symptoms:

Twitching
Unable to keep eyes closed
Different/pressured dizziness when move eyes up/down/side to side
See spots/green outlines always
Unable to focus
Cannot see straight

Other Symptoms:

Involentary muscle spasms (as if there is an earthquake)
Tingling in hands
Burning of every muscle in my body
Burning arms (on the inside, not the outside)
Burning face (on the inside, not the outside)
Depression/suicidal thoughts/loss of hope of EVER getting well

I was diagnosed with Celiac Disease last year and I read all your symptoms. Did your doctor do blood tests or a biopsy of your small intestine to confirm the diagnosis? I am wondering because all those symptoms you mention are not atypical of Celiac Disease. Most symptoms are GI in nature. Some people have gas, cramps, bloating, diarreha and/or constipation. I know that Celiacs can have different types of symptoms. Remember if it is Celiac Disease that you have then it can take a long time (months to even a year) for your small intestine to heal enough.

Just reading your symptoms again and wondering if you are taking anti-depressants. I ask because I was on and off anti-depressants because I was depressed when we could not find what was wrong with me. I was having most of the symptoms eye and head (dizziness, eye twitching, etc.) and they are all symptoms of depression and anti-depressants. Most doctors do not know anything about this disease because there is no research into it from the drug companies.....because Celiac is not sured with a drug. It's sad but true. Good luck.

Thanks for posting. I hope you find some answers, I don't know how you have gotten through the last 7 months!! The symptoms I'm experiencing are more digestive: gas, burping, chest pressure. I've had my gallbladder removed in January due to stones and I thought that would eliminate the symptoms but it has not. I've had every test imaginable and I still do not have a dx. I take zanax some days to lessen the anxiety it has created for me. I'm hoping that one of my doctors finds the answer and gives me a dx so that I can get me life back! I'm wishing that for you, too.

I was diagnosed with Celiac Disease last year and I read all your symptoms. Did your doctor do blood tests or a biopsy of your small intestine to confirm the diagnosis? I am wondering because all those symptoms you mention are not atypical of Celiac Disease. Most symptoms are GI in nature. Some people have gas, cramps, bloating, diarreha and/or constipation. I know that Celiacs can have different types of symptoms. Remember if it is Celiac Disease that you have then it can take a long time (months to even a year) for your small intestine to heal enough.

The Gastro. did a biopsy, but another doctor reviewed his notes and said that the G.I. doc didn't go into the second part of the small intestine, which is where it needed to be taken. My G.I. doc claims that he tested for it and it came back negative, but I don't know if I trust that.

I have not been diagnosed with anything, yet. But I am in a vegetative state 99% of the time. I despise my life, for the most part.

I know the symptoms I listed are not typical of Celiac. I actually have had MANY digestive problems for 6 years now . . . cramping, severe bloating, pain, constipation, etc. I just didn't list those symptoms because the other symptoms are the ones I've had in the past 7 months (as well as the digestive symptoms. My new symptoms are what's ruining my life. At least before, for pain, I could take pain pills. Now, I can do nothing. There is no medicine for an undiagnosed disease.

Just reading your symptoms again and wondering if you are taking anti-depressants. I ask because I was on and off anti-depressants because I was depressed when we could not find what was wrong with me. I was having most of the symptoms eye and head (dizziness, eye twitching, etc.) and they are all symptoms of depression and anti-depressants. Most doctors do not know anything about this disease because there is no research into it from the drug companies.....because Celiac is not sured with a drug. It's sad but true. Good luck.

No, I'm not on any medications. I've only just become depressed SINCE I've gotten so sick. I do admit I am depressed now, from being bed-ridden for months at a time, but my symptoms came BEFORE the depression came. If I could just get well some how, I know I would not be depressed any more.

Thank you everyone! For all your replies. :)

Thanks for posting. I hope you find some answers, I don't know how you have gotten through the last 7 months!! The symptoms I'm experiencing are more digestive: gas, burping, chest pressure. I've had my gallbladder removed in January due to stones and I thought that would eliminate the symptoms but it has not. I've had every test imaginable and I still do not have a dx. I take zanax some days to lessen the anxiety it has created for me. I'm hoping that one of my doctors finds the answer and gives me a dx so that I can get me life back! I'm wishing that for you, too.

Thank you. I'm sorry to hear that you are sick, as well. I actually do have all of the digestive symptoms, as well. I just didn't mention them because they're not what's ruining my life right now. The last 7 months has been unbearable. I have actually contemplated suicide many times . . . but I'm still holding on. Hoping and praying . . .

I am having difficulties with my new diet. I've started my gluten free diet, but I'm still getting attacks. Everything I've eaten has been 100% gluten free; I've even called each manufacturing company just to make sure every time I eat something. I've recently had an attack and I don't know where it came from.

Should I also stay away from soy, lactose, alcohol, and additives, even if they are gluten free?

Maybe you could answer a question for me . . . I absolutely did NOT cheat on my gluten free diet, but I still got VERY, very ill on the 5th day. I do confess I did have some Vodka on the 3rd/4th day, but I thought that was gluten free; I even called the manufaturing company on the back of the bottle.


Don't expect to get instantly better. Your body needs time to heal, and it can take months for that to happen. Also, you need to make sure that you're not getting any cross-contamination. Are you using the same toaster that you were using with regular bread, are you using non-stick pans that you used with foods that contained gluten? Stuff like that. Also cutting boards can be a big culprit in cross-contamination.

You might also want to avoid dairy products for the first couple weeks/months. The enzyme that processes lactose is on the tips of your villi, with CD your villi is pretty much gone, and therefore you can't really break down the lactose which makes you lactose intolerant.

Usually once someone has given their body time to heal they'll be able to handle lactose again, some can't. Regarding the Vodka, personally, I would stay away from ALL alcohol in the very beginning. Are you sure the Vodka you had was made from potatoes and not from grain??

Basically, it's just going to take time. Bette Hagman has written a few excellent (in my opinion) cookbooks, and I highly recommend them for new Celiacs.

Good luck!!

I don't have an answer for you, but just want you to know that you are not alone of this. Your symptoms sound just like what I'm going through, and I still don't have a diagnosis as of yet. I have three kids and a husband, and Most days I can't take care of them, because of the way I am. I too have thought about suicide for this, but my kids keep popping up in my head, keeping me from doing so. Are you sure it's celiac disease? I've heard that it can cause all sorts of problems. I've even been tested for lyme disease, because it too has the same symptoms. But my testing came back negative. I was treated for it for two months just in case, but it didn't help. Hang in there okay. I hope it will get better for you. One question, does your eyes have pressure behind them, and they feel sleepy because of the pressure, and you have to struggle to keep them open? I know this is crazy, but I feel that way often, and it drives me CRAZY. I'll be thinking of you and praying for you.

I don't have an answer for you, but just want you to know that you are not alone of this. Your symptoms sound just like what I'm going through, and I still don't have a diagnosis as of yet. I have three kids and a husband, and Most days I can't take care of them, because of the way I am. I too have thought about suicide for this, but my kids keep popping up in my head, keeping me from doing so. Are you sure it's celiac disease? I've heard that it can cause all sorts of problems. I've even been tested for lyme disease, because it too has the same symptoms. But my testing came back negative. I was treated for it for two months just in case, but it didn't help. Hang in there okay. I hope it will get better for you. One question, does your eyes have pressure behind them, and they feel sleepy because of the pressure, and you have to struggle to keep them open? I know this is crazy, but I feel that way often, and it drives me CRAZY. I'll be thinking of you and praying for you.

I'm really sorry that you have the same symptoms as me. I mean really sorry. The ONLY reason I haven't given up is also, like you, because of my daughter (and my sisters and other family). But I seriously don't know how much longer I can live this way. This is inhumane. It's unatural. It's like hell on earth. . . . I'm sure hell is much worse . . . but I've been through so much in life and this is worse than anything I ever could have imagined. It hurts so badly not to be able to care for my daughter. She comes to me and says, "Mommy, will you play with me?" And I hear her, but I can't even hardly turn my head to look at her, much less speak and tell her . . . how horribly sick I am. And even on the days I can find the energy to speak or move my head from my pillow, she doesn't understand why mommy can't get up. She's only 4.

This is killing me; inside and out.

Oh, and I'm not married; it's just me and her. It's been 7 months now, and I've been considering calling all my relatives and trying to see if some one can care for her. She will have to go live with some one else. I cry almost every day. All I want is tobe able to be her mom. If only I could have my health back . . . :(

And, yes, I do have an extreme pressure in/behind/around my eyes. But they are constantly twitching and it's actually hard for me to keep them closed because they are always jumping around. Don't get me wrong: I am tired ALL of the time; like my body is trying to fight something and using every ounce of energy I have . . . but as much as I just want to sleep all of the time, it's difficut to keep my eyelids from popping open unwillingly.

I don't know if any of this helps you . . .

I have not been diagnosed with Celiac; I have not been diagnosed with anything. I have seen every doctor available and every specialist I could think of. I've had at least $20,000.00 worth of tests done, with nothing; everything is negative.

Who has the strength to live a life like this? We/humans are not made to live like this. I'm breaking down. I don't know where else to turn to. I've prayed and cried and begged for God's healing touch . . . but I don't know where He is! . . . :confused: :(

[QUOTE=morrisun;3100096]Also, you need to make sure that you're not getting any cross-contamination. Are you using the same toaster that you were using with regular bread, are you using non-stick pans that you used with foods that contained gluten? Stuff like that. Also cutting boards can be a big culprit in cross-contamination.

Are you sure the Vodka you had was made from potatoes and not from grain??




I read about that and I am very careful not to cross-contaminate anything. I watch what I touch, where I place my silverware, andwhat kinds of appliances I use. So, I don't believe I got anything by cross-contamination.

I'm also sure that the Vodka was gluten-free. I called the Customer # on the back of the bottle and spoke with some one at the company. It was on their gluten free list.

I wonder what kind of corralation there is in the body between the digestive system and the head. It is so odd to me that when I ingest something, my head gets SO DEBILITATINGLY SICK!!! I've looked and looked, but no matter how much research I do, I cannot find the tie between the digestive system and the head symptoms. But I am 100% POSITIVE it has something to do with my digestive system. It only happens immediatley AFTER I EAT something. There is a definite reaction between the two. . . . But no doctors I've spoken with (and there have been a LOT) have ever heard of anything like it. . . . I can't possibly have a new disease. What, am I the first person in the world to have this problem???!!! (Not yelling, just unbearbaly frusterated and sad). :( :confused:

debilitatingdiz,

Here are a few thoughts that occur to me, some of which have been suggested by other posters.

1) If you indeed have celiac, then it will take a while for your body to heal itself and quit reacting to everything. It took me about 6 months before my body really settled down and reacted only when I ingested something contaminated with wheat. I felt better within a few weeks, but my body took a few months to heal and settle down.

2) There can be gluten hidden in surprising places. Ground spices are often rolled down a conveyer belt with wheat flour on it, in order to coat the spice bits and make them easier to pour from their container. Soy sauce is half wheat. See if you can find books on celiac. The cookbooks by Betty Hagman, as suggested above, are are good start in learning to cook without gluten.

3) Since celiac causes the body to destroy the cilia in the small intestines, nutrition is affected. One of the reasons that doctors don't recognise the symptoms of celiac, and then order tests to confirm it, is that each individual is different regarding exactly which cilia are destroyed. So therefore each person winds up with different nutritional deficiencies, and therefore different symptoms. Again, if you do indeed have celiac, many of your symptoms could come from nutritional deficiencies. Exactly which nutritents are deficient needs to be determined by a doctor. Supplementing with these missing nutrients will help, but it can also be a problem because the cilia that normally process them are damaged. Therefore, there could be a while before your body has healed itself enough to again be able to process specific nutrients.

4) Yes it is common for people to develop lactose intolerance while they are having celiac reactions, as morrisun says. Stay away from dairy products for a while.

5) Your problems could come from something entirely different, and I have no brainstorms to be able to speculate. Sorry.

Give yourself time on the gluten-free diet. And keep pursuing the doctors. Too often they throw their hands in the air when they can't figure something out, and somehow make it sound like you're making all this up. Of course you're not. Hang in there. I hope other people can offer suggestions.

--Rheanna

I am still having reactions even though I am on the gluten free diet 100%. The only thing I can think of that could have given me a reaction is that I ate some rice pasta off of a plate that had only been through the rinse cycle in the dishwasher. I was at some one elses house, so maybe they ate something with gluten off of that plate? I'm searching/screaming for answers here! Why am I still having reactions?! Could I possibly have other food intolerances, as well? I have been staying away from ALL meat, dairy, additives, cloroings, proccessed food, alcohol, etc.

Ok, here is a try.

I am awaiting the results of my biopsy to see if my symptoms are in fact celiacs. I think I have all of the symptoms but weight loss. Instead, I have weight gain. anyhow, one auto immune disease does create or in combination with others.

I am 35 years old and have had three surgerys. I had my tonsils out when I was 10 years old. Sinus surgery about 7 years ago and gallbladder removed one year ago.

My wonders with the head symptoms that has been posted..ok this could be a long shot. But I have acid reflux. and this acid reflux caused my sinus problems. serious serious sinus problems. Pains behind my eyes, dizziness, always wanting to sleep, nausious etc etc. Once I was diagnosed with acid reflux and started on high dosage of meds--I stopped getting sinus infections and the rest of the problems with my head.

well, recently, when I found out that I may have Celiacs.. I decided to eat all of the foods that I want to. All that I really enjoy because if the results came back with Celiacs--I could never eat them again. Neverless, I feel like crap. I am bloated etc. but my sinuses are killing me again. Could this be my acid reflux cause my diet is out of control. Basically, all I am trying to say is that maybe you have had sinus problems and they are so bad that you think it is part of your celiacs. I also know that Allergies are/were very high this year. I know of the pain. see if your doctor can check your sinus. Cat scan maybe needed.

One more thing, remember vitamins or over the counter meds can also have gluten in them.