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Fatigue, Hunger And Blurry Vision


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#1 karlsthlm

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Posted 09 December 2009 - 05:27 AM

Hi everyone,

My name is Karl, living in Sweden and just recently found this site.
I've got my Dx way back in -74 but was told around -90 that it could actually heal permanently so as a stubborn teenager, I ran off to get a Pizza...
This kept going until -05 when my fiance told me to get a grip of myself and re-start the gluten-free diet.

Since then, I'm on a strict gluten-free-diet, I've been rushed to the ER a couple of times with pain that I would compare to being stabbed with a knife.
If there's an exam available, I've done it.

My problem(s) today is apart from occasional diare, pain, extreme fatigue, extreme hunger and heavy pain unless I eat every 2 hours.
And my real problem is that the doctors are giving up on me...

But recently, I started to experience blurry vision, this occurs most of the time when I havent eaten a lot and it's not diabetic/bs-related and it only lasts for maybe a minute or two but I get all dizzy and unless I sit down, I tend to fall. First couple of times, it was really scary but then I started to get used to the feeling.

Has anyone else had these symptoms and if so, what was the diagnose?

Thanks in advance,
Karl
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#2 mommida

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Posted 09 December 2009 - 05:42 AM

Hello Karl,
As a Celiac you will have difficulty absorbing nutrients from the food you eat. If your iron is low (anemia) that would cause you to feel dizzy. If your iron levels are low you could have an urge to eat non food items (most common - to want to chew ice) this is called pica.
Another common vitamin defiency that might cause nuerological problems is vitamin B12.

Are you eating "gluten free" foods that use the European codex rating rating?
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#3 karlsthlm

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Posted 09 December 2009 - 11:40 PM

Hi there,

Accordingly to the bloodsamples, all my vitamines and so on are normal.
Nothing showed up on the CT, nor the MRI. The only thing that showed up was an extra "Bile duct" (not sure about the name though).
Since I'm having these problems, I'm extremely strict in following the diet, I.e. not even products with traces are allowed and since a couple of months ago, I'm not eating out, only homecooked meals made by myself so I'm 100% sure that there's no traces.

A year ago, I made a meal-diary to count the kcals I eat and I my average was slightly above 12.000 per day. Not gaining any weight (65kg / 176cm) and I'm not an athelete and still, being tired and all.

I do excercise everyday, walks about 1.5h per day (got dogs).

Any ideas?

Thanks in advance.

/Karl

Hello Karl,
As a Celiac you will have difficulty absorbing nutrients from the food you eat. If your iron is low (anemia) that would cause you to feel dizzy. If your iron levels are low you could have an urge to eat non food items (most common - to want to chew ice) this is called pica.
Another common vitamin defiency that might cause nuerological problems is vitamin B12.

Are you eating "gluten free" foods that use the European codex rating rating?


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#4 dilettantesteph

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Posted 10 December 2009 - 07:20 AM

I get blurred vision when I eat trace gluten by accident.
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#5 karlsthlm

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Posted 10 December 2009 - 12:00 PM

Thing is that the blurry vision for me is (as I guess) neurologic because it occurs at random and 99% of the time prior to actually getting the stuff into my mouth, it kind of happens when I open the jaws...

I get blurred vision when I eat trace gluten by accident.


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#6 ravenwoodglass

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Posted 10 December 2009 - 01:31 PM

Thing is that the blurry vision for me is (as I guess) neurologic because it occurs at random and 99% of the time prior to actually getting the stuff into my mouth, it kind of happens when I open the jaws...


If this happens when you open your jaw I would see a dentist. They might be able to help figure out what is going on. It also wouldn't hurt to give some sublingual B12 a try. How is your blood pressure? Is it on the low side? Are you drinking enough water?
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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#7 karlsthlm

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Posted 10 December 2009 - 10:37 PM

Been to the dentist, nothing special such as nerves or such.
Sublingual B12 you said....
Bloodpressure, guess a bit high since I'm stressed out because of my gut.
I'm drinking ok with water.


If this happens when you open your jaw I would see a dentist. They might be able to help figure out what is going on. It also wouldn't hurt to give some sublingual B12 a try. How is your blood pressure? Is it on the low side? Are you drinking enough water?


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#8 Jeaner

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Posted 01 March 2010 - 07:40 AM

I saw on Dr. Oz's TV Show on Friday (2/26/10) a question from a lady with Celiac and she was asking about fatigue. He agreed and mentioned something (drug?, supplement??)
called Elcornatine?? Alcornadine?? Hard to hear. Looked in Web MD and found nothing! Anyone heard of this and what it it? Thank You!! Jeaner
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#9 blancasagro

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Posted 01 March 2010 - 05:34 PM

I get blurry vision all the time, and some very bright vision too, MRI EKG everything ok, my neurologist insist that I'm ok but I'm looking for second opinion. Things are getting better since I quit other foods like dairy, artificial colors and flavors, processed meats. I had b12, magnesium, iron all check up, but believe me if I eat one M&M i will get totally crazy so I think is mostly the artificial colors
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#10 bluebonnet

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Posted 02 March 2010 - 04:26 AM

I saw on Dr. Oz's TV Show on Friday (2/26/10) a question from a lady with Celiac and she was asking about fatigue. He agreed and mentioned something (drug?, supplement??)
called Elcornatine?? Alcornadine?? Hard to hear. Looked in Web MD and found nothing! Anyone heard of this and what it it? Thank You!! Jeaner

i heard this too and i know it was a mineral supplement. i record dr oz so i will look back and see if i didn't delete it!
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#11 bluebonnet

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Posted 02 March 2010 - 04:27 AM

i was told it had something to do with blood sugar levels. if they drop to low or whatever it tends to cause dizziness and blurry vision. i don't have diabetes but it does make sense. hope you feel better! :)
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#12 coffeetime

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Posted 02 March 2010 - 08:05 AM

Thank you for remembering the episode. I pulled it up and it is called L-caratine (sp?) It helps with fat metabolism which helps in energy production. It makes sense since we can't absorb fat or the vitamins that go with it, at least before our intestinal linings are healed. I'm already on an Antioxidant, iron, B-complex, fish oil, and iron supplement,(for the last month) I'm still exhausted so I think I will give it a try. By the way I was having the dizzness and blurry vision, I thought diabetes too but it turned out to be heart palpitations that I think is related to celiac (cardiologist hasn't decided why yet)

i heard this too and i know it was a mineral supplement. i record dr oz so i will look back and see if i didn't delete it!


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#13 chasbari

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Posted 02 March 2010 - 02:36 PM

I think the supplement is actually L-Carnatine. See if you find anything that way. I, too, experience blurred vision and sometimes slurred speech if I go too long without calorie intake. I have reason to believe I am having fat malabsorption problems. Sounds like you have a very high caloric intake which seems to me to indicate a lot of healing needing to go on, especially if you are not getting enough protein to go with all the calories. Just suppositioning, though. My visual clarity really changes throughout the day and sometimes doesn't seem to be linked to any particular pattern of sleeping/eating. Anyone else having similar experiences?
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#14 Anna and Marie

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Posted 03 March 2010 - 05:35 AM

I think the supplement is actually L-Carnatine. See if you find anything that way. I, too, experience blurred vision and sometimes slurred speech if I go too long without calorie intake. I have reason to believe I am having fat malabsorption problems. Sounds like you have a very high caloric intake which seems to me to indicate a lot of healing needing to go on, especially if you are not getting enough protein to go with all the calories. Just suppositioning, though. My visual clarity really changes throughout the day and sometimes doesn't seem to be linked to any particular pattern of sleeping/eating. Anyone else having similar experiences?

I also experience blurred vision and speech too long w/ out calorie intake. The speech thing- this is kinda different but my tongue swells and lips don't move very well, been told it could be a thyroid issue(hypothyroidism)but that hasn't been confirmed by a doctor yet. Does anyone have a history w/ thyroid issues?
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#15 GFinDC

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Posted 03 March 2010 - 06:32 PM

Hi everyone,

My name is Karl, living in Sweden and just recently found this site.
I've got my Dx way back in -74 but was told around -90 that it could actually heal permanently so as a stubborn teenager, I ran off to get a Pizza...
This kept going until -05 when my fiance told me to get a grip of myself and re-start the gluten-free diet.

Since then, I'm on a strict gluten-free-diet, I've been rushed to the ER a couple of times with pain that I would compare to being stabbed with a knife.
If there's an exam available, I've done it.

My problem(s) today is apart from occasional diare, pain, extreme fatigue, extreme hunger and heavy pain unless I eat every 2 hours.
And my real problem is that the doctors are giving up on me...

But recently, I started to experience blurry vision, this occurs most of the time when I havent eaten a lot and it's not diabetic/bs-related and it only lasts for maybe a minute or two but I get all dizzy and unless I sit down, I tend to fall. First couple of times, it was really scary but then I started to get used to the feeling.

Has anyone else had these symptoms and if so, what was the diagnose?

Thanks in advance,
Karl


Hi Karl,

It's good that you have started eating safe meals you cook yourself. At least that way you can control what goes into your body, and identify the ingredients that may cause problems. I assume you have eliminated all the possible gluten in your coffee, tea, soda, beer, medicines, and any vitamins you take.

I used to sometimes sort of pass out. And sometimes just got woozy feeling. Vision was variable too, basically hard to focus. I did get an EKG but they said my brain was working ok, which surprised me1 :-)

This all was mostly last year. Since then I haven't had any actual pass out episodes and seldom get the woozy feeling. The difference is I started taking a thyroid supplement and eliminated soy from my diet. I had been very low soy already, but getting rid of all of it made a big difference. I have even reduced my thyroid supplements to only every other day or so this year.

So, I suggest you look into other possible food intolerances. They are not uncommon in celiacs on this board. And other intolerances can have a very big affect on you.
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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, and hard work. have a good day! :-) Paul


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