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tbradley93

My Ophthalmologist Made Me Cry Today!

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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$$!


Tamara, mom to 4 gluten & casein free kiddos!

Age 11 - Psoriasis

Age 8- dx'd Celiac March 2005

Age 6- gluten-free/cf, allergy related seizures

Age 4 - reflux, resolved with gluten-free/cf

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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

Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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!


Tamara, mom to 4 gluten & casein free kiddos!

Age 11 - Psoriasis

Age 8- dx'd Celiac March 2005

Age 6- gluten-free/cf, allergy related seizures

Age 4 - reflux, resolved with gluten-free/cf

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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! :)


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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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!


Confirmed by endoscopy and blood tests October 2007

Donna

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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......


Just my .00000002 cents worth

If I knew what I was doing years ago I would have half a clue today!

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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


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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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.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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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!!!!


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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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


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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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

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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!


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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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!

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...


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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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! :)

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


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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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.


~Barb

Gluten Free October 18, 2007

YIPPEE for Gluten free

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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


Kit in St. Louis

diagnosed with celiac disease May 1,2001 by positive tTG and endoscopy after lifetime of illness and seeing at least 25 doctors.

diagnosed with Graves' disease after thyroid storm in August 2001

diagnosed with SIBO 2006, treated with rifaxim, symptoms subsided temporarily, now back on SCD

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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


Kit in St. Louis

diagnosed with celiac disease May 1,2001 by positive tTG and endoscopy after lifetime of illness and seeing at least 25 doctors.

diagnosed with Graves' disease after thyroid storm in August 2001

diagnosed with SIBO 2006, treated with rifaxim, symptoms subsided temporarily, now back on SCD

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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


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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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

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

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