So, I go to the Ophthalmologist today b/c even after 4mo gluten free I'm realizing that I'm REALLY gluten sensitive and it has been affecting my eye (its very embarrassing in public). Anyways, I’ve been dealing with this problem for over a year and I'm getting desperate so I decided to go to as many docs as it takes for my immune system to get strong again. I have already seen the GI and the blood test came back neg for Celiac’s although I have not ruled it out b/c I took the test while gluten free. As I explain all this to the doc today he says the following at random moments...

"Have you looked up what food has gluten?" --um...yeah…duh! Is this what I paid a $45 co-pay for! ( I didn’t say that but I really wanted to)

"Yeah, gluten is in everything...its not something you want to be allergic to." --wow, thanks doc!

"Well you can't eat out any more! Unfortunately some people have allergy problems that they have to deal with...like I'm allergic to penicillin...if I get sick I could die." ---first off, what does this have to do with me (or having a gluten allergy)! And I HATE when docs say you cant eat out...that isn’t logical! What do I do if I go out of town for the day the week or if I go to a Christmas party???? At some point everyone has to eat food prepared by someone other than myself. (I told him this too)

I left his office with the impression that his advise was...well sucks to be you! They don't listen or have any idea what it REALLY means to have a food allergy. This is affecting my life, my mood, and my appearance! The whole time he was talking to me (even when I was balling from frustration) he had this smile on his face. I wasn’t smiling; I'm in his office having a breakdown...I came in the office with a page of symptoms and pics of my eye broken-out...Have some bedside manner!

Okay, I got it out! Now I need to find a doc that is sensitive to what I’m dealing with. It’s like a needle in a haystack!

Ugh, sorry you had to go through that! I'd bet that if we took a poll, almost all of us have had at least one doc make us cry, lol! I know I sure have....twice actually. I went to a doctor years ago for my headaches. I started explaining my symptoms, and he got really angry with me and told me to slow down, I was giving him too much information. I couldn't help it, I started crying. I was crying b/c the jackass yelled at me, but he took this to mean that I was crying over something else. He started drilling me about how my husband treated me, was I abused, etc. This was the first time I had seen this guy! It was so bizarre. I never did get anything for my headaches, lol. I couldn't get out of that office fast enough....he was an odd man, and I really should have filed a complaint for the way he treated me.

Second time was our pediatrician, he kept blowing off my concerns about dd's developmental delay. I finally pressed him on it, he got frustrated and told me I'd be wasting my time and money going to a specialist to have her evaluated and told me to wait it out. I held in my tears until I checked out, but then it all came out!!!!! I did get her evaled, and it turned out she was nearly two years behind. Jerk.

I know there are good doctors out there, but just like everything else, there are alot of rotten eggs too. I hope you find a new doctor, this guy sounds like a major a$$!

Yea that doctor was a jerk, we have all dealt with a lot of them.
The problem with your eye that you are dealing with, is it by any chance a 'tic'? This would be when the muscles around the eye twitch? If that is the case you may want to add a sublingual B12 to your diet and make sure you are taking a good vitamin that is high in all the other B's. Gluten Free of course. That may help out a lot with the nerve function and stop the tics a bit quicker than just the diet. You also need to be a real bear when it comes to CC. Eliminate gluten from everything you come into contact with. Do this even with shampoos and other toiletries. If you absolutely can't live without certain gluten toiletries you can add them back in after you are feeling better and see if they are causing a reaction.
Hang in there, it ususaly takes years for our symptoms to get the point where we realize they are not normal, it can take a while to heal fully.

I forgot to mention.......I get eye twitches with accidental glutenings. It can really be bothersome, and very annoying. It usually happens with small contaminations, not enough to cause major abdominal distress, but still a definate sign that something snuck in. And it lasts for days. Hope you find some help, good luck to you!

I have that stupid eye twitch!!!! It's only on my left eye, and it's been around all my life on and off, but more so recently. It seems like the past month I've been dealing with it. My mom says its from fatigue, but it seems that after a month, it would clear up.

So a B complex? B12 specifically? How long does it usually take to stop?

I do notice it with gluten also. I had dinner at a friends house this weekend, and it started twitching Sat sometime. I just never thought the two were related... learn something new everyday!

Can't believe I came across this thread...I have spent the last couple of weeks going to Docs becaus both of my eyes were twitching.....The Dr's know I am a confirmed Celiac but none thought the twitching had anything to do with it. They finally gave me Botox injections yesterday to see if it would stop. Hope this doesn't make things worse!

Well Son of a ***** add me to the twitching list, drives me nuts when at work or watching TV.... off to locate gluten-free B vitamins......

I don't have any advice for you, but I'm sending you *hugs*.

Oh wow. Doctors. I really have had bad luck with them too. It seems like many of them want you to be passive and adoring or some such which I never managed to do. Celiac seems to be against the "religion" of many doctors it appears. They think its all old wives tales... They also get into the competion or superiority thing which I beleive misses the point that hey doc, we are here because we need help to heal--let's do this together. Yeah--I have my horror stories too...Now I just try to take what I can learn from them and regard the rest as philosophically as I can.

The eye thing meanwhile is such a bear with celiac. Its the nervous system not being fed properly due to malabsorption. It really is important to take plenty of minerals (including sea minerals and kelp as well as calcium etc.) plus the b vitamins. As I have said elsewhere for me the co-enzyme b vitamins are much more absorbable.

And yeah, I had some twitching and shaking too just before I finally on my own figured out I had celiac from the Merck Manual 15 years ago. A doctor though I had Leaky Gut but I figured that wasn't it. I tried no gluten out and finally got harder teeth and nails. I figured I was onto something despite my doctors not helping out at all. I told Kaiser but they didn't seem interested even when I wasn't healing later on from a car accident.

Unfortunatly the old Merck didn't list all the info so I continued to get exposed to hidden gluten.

The no gluten at all I am finidng is essential. This new awareness about hidden gluten from cutting boards etc. is really helping a lot. My aching joints don't lie! Ditto with my so sensitive eyes. I am thinking as I said elsewhere that for people like us gluten is similar to Superman's kryptonite!

In addition, my eyes have actually improved as a result of the co-enzyme b vitamins (I now wear glasses that are 20 years old!--they are better than a 3 year old prescription!!), not to mention that my hair has gotten wavy etc. whereas before it was always perfectly thin and straight. I say this having avoided most sources of gluten for years and only taking the co-enzyme b vitamins for the last year and a half. This last year and a half I also stopped getting colds and flue etc.

Yolo

Oh frig!!*$%! Geez, I never put that together until now. I have had eye twitches around my right eye for years. I always figured I must be nervous or something. Never even thought of it being associated with celiac. Course I wasn't aware of celiac until recently anyway. H.E. double tooth picks, I thot I had bad nerves or something, maybe I was right, but due to celiac malabsorbtion!

Well, they seem to be gone at the moment. I have been taking sublingual B-complex by Spring Valley. Given to me by my most excellent sister Pam, who also figured out I was probably celiac. I also take a Solgar B-50 complex. Maybe your twitches will go away with supplements and gluten-free also.

I've been taking a b supplement since i read this post, and wouldn't you know! Today, for the first day in who knows how long, NO EYE TWITCHING!!!!

Hi Lizard and All,

I am so glad you guys are trying the co-enzyme B vitamins and discovering they are helping against the twitches!

When I started taking theco-enzyme B's I felt like a revolution was taking place inside me--and it was!! B vitamins are essential for all kinds of things (especially the nervous system!) and we with celiac have trouble making use of them.

My heart used to race for years even though I had low blood pressure cholesterol and the rest and was on a basic no gluten diet. But now with the Co-enzymes B's (in contrast to the regular B complex) my heart doesn't race any longer! Plus I sleep better, don't have twitching aching legs and feet very often (like I used to constantly), and now no longer get colds or flu which I also used to get constantly. With it I also have gotten rid of my headaches 99% of the time.


Yolo

It took me a while but I finally found myself a good doctor that seems to understand Celiac. However my daughters pediatrician doesn't really get it. Based on my Celiac he ordered a test for her and it came back "mildly positive" and he told us that mildly positive doesn't really mean positive. Well in my book it does!

He also said, oh wow you don't want to have this, its so hard, wow its so hard almost no one can do it. Well that sets us up for failure. My daughter has a life threatening peanut allergy so she is very upset at now having to avoid gluten too. So when she cheats she says... "Mom even my doctor said no one can really do this".

It makes me so angry and I told him, hey I've been doing it for 4 years and I don't find it hard at all, its second nature. I do know from reading this list a lot of people DO find it hard and do cheat occasionally or even dream about gluten foods. I never did, sure it took a while to figure where the gluten was hiding but I don't feel gypped at all.

My 2 cents!

Susan

When people say it's too hard, it's because they just aren;t quite ready to totally commit yet and in time, they will. It's a process some of us go through, at least, in my opinion. I never did, from the beginning, I went gluten-free and never looked back. I was so sick of being sick, I was willing to give up anything to feel better! Yet, that is my type of personality. 7 1/2 yrs, and I still miss stroganoff, but I wouldn't touch it for a million bucks.

I work for a optometrist, he knows I am a celiac and he still refuses to believe that any problem with my eyes can be related to the celiac disease. I have continual problems with dry eye, he is adamant that it is hormonal or an allergic reaction, but he absolutely will not admit it is autoimmune. Just once, I asked him about vitamins and he told me that "everyone" can get all the vitamins they need from the foods they eat, to which I did reply, "most celiac's cannot get all of their vitamin requirements from food and most celiac's do need to take additional B vitamins, especially B12!"--he just glared at me! I now realize I know a lot more about vitamins than he does. His wife was even tested for celiac disease at one time, and was found to be dairy intolerant, you would think he would understand.

Doctors, as a rule, do not understand vitamins and minerals, therefore, they also do not understand what happens when we lack certain ones. Thankfully, we have the internet so we can figure it out for ourselves!

Did you ask him if that was anything like being mildly pregnant?
LOL

Sorry to hear that he set her up for failure. And MDs wonder why so many people doubt them...

Hi Lizard and All,

Just was looking at this thread again--and whereas for some its the B-12 that's needed --for me and my mom its B-1! without which one gets Beri Beri like symptoms and all the rest (legs, feet burning, heart palpitations, nervous problems, glaucoma etc.). I wonder how many other celiacs have this? They don't even do B-1 injections. And I think they rarely test for this. I just got lucky finally after years of mysterious symptoms. Fortunately they have the Country LIfe Co-enzyme B vitamin complex for a relatively cheap price. I have trouble with the sublinguals due to the sorbitol.

I also am becoming aware how I need to really move physically and be mentally engaged or I otherwise easily fall into a depression. I am convinced this is part of the celiac (with my degraded nervous system its all too easy--the myelin sheath was down to 50%--no doubt better now but still being rebuilt) as well as the old hunter gatherer genes. Hey, we were built to survive without much civilization to support us! And I really did feel pretty good living semi-primitively years ago in the woods whereas my then boyfriend fell apart.

Am remembering too how many of my mysterious joint pains and illnesses came as a result of eating or otherwise being exposed to gluten over the years. Sometimes I think of what in a just world would be needless wasted time and illness etc. with all this--however I try to look at it instead as a journey of self discovery which also gives me more understanding and compassion of the suffering of others.

Yolo

OMG I used to get the eye twitches so badly, I thought it was stress from my then spouse! I never ever have them now though lol.
Ok I need to know what are you all talking about when you are referring to the eyes? My daughter wears contacts and at first it was fine but now she cannot even put them in, her eyes get red and goopy and such. I tried to get her tested for the wheat but that dr just told me everything came back just fine. Oh yeah like I believe that, she is so anemic it isn't funny so I know they were not going to get the wheat correct.
So is it somehow related, the contacts and the eyes? I have a new Dr for her and am going to try to get some answers we also are going to the ophthalmologist but he is real stiff so no way will I bring this up to him.

At the NIH conference on celiac disease in Wash DC, I heard that a doctor's pessimism about the ability of a celiac patient is a highly reliable indicator of how well the patient will adhere to a gluten-free diet.

First Do No Harm! I guess he forgot that part of the oath.

Kit

Hi Kit,
Yes overall for some reason they aren't so interested in patients who want to help themselves with diet of all things. Like its the hardest thing in the world. It really is weird I think. No money in it I guess is what they figure. They can't push pills or do emergency procedures. Soemwho they want to be the expert or something and with this it doesn't fly since most of them weren't taught much about nutrition.
Its also part of the old wives tales I think and overtures of the 19th cenetury with Rickets and Quack herbal cures etc. which they learned to debunk in med school. It seems like it goes against the grain to think some of that old stuff actually applies and/or helps.
Yolo

Kit, Thanks for sharing this info! What conference was this and when? Thanks sharing about the study.