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Could This Be Celiac - Long List Of Symptoms - Please Help


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#31 marco

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Posted 03 May 2013 - 01:58 PM

Hi Marco,

 

That's right, oats shouldn't be eaten for 12 months or more.  Around 10% of celiacs react to oats just like they do to wheat, rye, and barley.  So it's a good idea to avoid them for now.

 

I think it is easier to avoid sugar after you do it for a while.  If you get used to eating meats and veggies for most of your calories that gives you a more even energy release than a sugar rush.  Less bouncing back and forth between high energy and low.  Which means less tress on your body.  There are replacement sweetners available with low calories.  But I think the best thing is to just stop eating the sweet stuff.  Maybe you could try a salty snack instead?

Thanks again, I will stay off oats as well. Yikes I think I may also have a problem with yeast extract, when I eat certain things without gluten I seem to have a slight reaction but not as bad as the gluten and the only ingredient it could be is yeast, come to think of it maybe yeast as that is in bread anyway, something else to think about I guess.

 

All the best Mark


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#32 Dozey

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Posted 04 May 2013 - 12:56 AM

Hi Marco. i can't offer any advise about Celiac as I am new to it myself, but a lot of your symptoms match B12 deficiency. Have you been tested? It is easily overlooked and mis diagnosed. Hope you get some help soon.
Jo
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#33 marco

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Posted 04 May 2013 - 01:52 PM

Hi Marco. i can't offer any advise about Celiac as I am new to it myself, but a lot of your symptoms match B12 deficiency. Have you been tested? It is easily overlooked and mis diagnosed. Hope you get some help soon.
Jo

Hi Jo,

 

Thanks for the reply. Yes i have read up on b12 and i am taking it at the moment as I felt that the symptoms were similar. Strangely i did have a celiac test before at doctors and it came back negative. TBH i have giving up on doctors as they have never helped me and have taken things into my own hands.

 

I have definately seem an improvement since going gluten free about three weeks now though, clear head when it was foggy, increased speed of thought and feeling lighter and more positive so there is a change in me.

 

I also used to get very emotional all the time, and this seems to be under control more.

 

I did read that when you have a gluten intolerance it stops you digesting vitamins and nutrients and this could explain vitamin B12.

 

I am not sure if this is in my mind but my hair seems softer and skin not as dry and flaky whether that could happen in 3 weeks and is

related i have no idea.

 

Anyway thanks for the support.


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#34 GFinDC

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Posted 04 May 2013 - 04:25 PM

Hi Marco,

 

 

Yeast extract is another name for MSG.  Some people react to MSG, so maybe that is the cause.


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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

#35 Brandiwine

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Posted 04 May 2013 - 05:16 PM

I grew up with and had all the symtoms you mentioned (and serveral more) except acidic eye fluid and rash. Since being gluten-free I haven't had much of these symtoms. I seem to be continuing to improve the longer I am gluten-free. My son showed a lot of the symtoms we had growing up he also has illness induced asthma (drs jerk me around about this) and the rash, behavior issues, he's a great kid and super smart but his moods are all over the place and he has my dislexia. I started him in a gluten-free diet two weeks ago and already see GREAT improvements! I don't need him to be diagnosed to know that he is most definitely doing better without gluten. I did go through pretty rough withdrawals, bread, pasta and cakes were my go to comfort foods before all of this. I am vegan I have to say that out of everything I cut out of my diet, gluten was the hardest! Hands down! But worth feeling better, I still have a lot of healing to do but still way better. I say stick with the gluten-free diet, it doesn't matter if you get test results with positive or negitive, some never get positive and get great results when gluten-free. It won't hurt to try, and will possibly help. It takes so long to heal, I feel the sooner you start the better. I feel the best positive test result you can get is after being gluten-free for serveral weeks and trying something with gluten, you should know by your reaction if you have a sensitivity. Not everyone agrees with this method, and that's okay, just my thoughts. Hope you feel better soon!
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Vegan, Gluten Free diet, sensitivity to onions, soy, allergic to Cinnamon

#36 marco

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Posted 07 May 2013 - 12:47 PM

I have now been on the diet for 3 weeks and have been feeling much better in myself, I think I have made a good progress.

 

I have been very careful to read labels etc - however today i got some symptoms but everything i eat labels were OK but I knew something was wrong, so i went online and found that a chicken tikka sandwich meat from aldi had no wheat gluten on the label but it was listed on the manufacturers website which i found strange.

 

OK, is there anyone on the forums who is effected in a mental way by Gluten? When i had gluten through the Tikka, I had all the brain symptoms I get like the head siezures, like someone has filled my head with something or strange electric zaps and a solid feeling behind nose and even a feeling of being off balance etc.

 

This all happens really strong a few hours after eating this gluten, in this my imagination as I find it hard to believe that gluten can have such an instant impact in the head and brain, I mean i only had slight wind as well and no stomach issues.

 

Is it possible to have a problem with gluten that effects the mind more than anything else or could there be something else as well.

 

Many thanks in advance


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#37 marco

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Posted 07 May 2013 - 12:50 PM

I grew up with and had all the symtoms you mentioned (and serveral more) except acidic eye fluid and rash. Since being gluten-free I haven't had much of these symtoms. I seem to be continuing to improve the longer I am gluten-free. My son showed a lot of the symtoms we had growing up he also has illness induced asthma (drs jerk me around about this) and the rash, behavior issues, he's a great kid and super smart but his moods are all over the place and he has my dislexia. I started him in a gluten-free diet two weeks ago and already see GREAT improvements! I don't need him to be diagnosed to know that he is most definitely doing better without gluten. I did go through pretty rough withdrawals, bread, pasta and cakes were my go to comfort foods before all of this. I am vegan I have to say that out of everything I cut out of my diet, gluten was the hardest! Hands down! But worth feeling better, I still have a lot of healing to do but still way better. I say stick with the gluten-free diet, it doesn't matter if you get test results with positive or negitive, some never get positive and get great results when gluten-free. It won't hurt to try, and will possibly help. It takes so long to heal, I feel the sooner you start the better. I feel the best positive test result you can get is after being gluten-free for serveral weeks and trying something with gluten, you should know by your reaction if you have a sensitivity. Not everyone agrees with this method, and that's okay, just my thoughts. Hope you feel better soon!

Thanks for the reply, sorry to here that you have this as well. Did you ever get any effects on your mind, brain and like a solid feeling behind the nose. feelings of being off balance and clumsiness as described in my new post below, it seems that this problem effects my mind and sinuses more than my digestion etc which I find odd.

 

All the best Mark


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#38 taynichaf

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Posted 07 May 2013 - 02:29 PM

 

 

 

list two

Strange brain zaps - like an electric shock inside head that lasts seconds but is scary

feeling like someone is glasping the top of head pressure

pins and needles in feet and hands

sharp pain lower right hand side of stomach - stabbing pain

tension in shoulders etc

 


 

Yes! I had the "brain zaps" too! It wouldnt last long, but how i described it was my brain vibrating, then i would get a little dizzy... I havent had this for awhile, but its nice to know im not the only one! I wonder what it actually is though..


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Gluten Free 06-02-2013

Dairy Free 06-09-2013


#39 marco

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Posted 08 May 2013 - 03:38 AM

Well feel muggy headed today and very emotional, a bit of a coincidence as I ate gluten by mistake yesterday, it is starting to look like Gluten has been the problem all these years.

 

 

i read this:

 

Symptoms of gluten ataxia can range from progressive balance difficulties and unsteadiness on your feet to problems swallowing. You might have double vision, or even issues controlling your bladder. Your symptoms might come on slowly or might appear suddenly, but probably won't include gastrointestinal symptoms that could indicate celiac disease.


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#40 GFinDC

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Posted 08 May 2013 - 08:52 AM

Hi Marco,

 

Yep, people with the nueral affects like gluten ataxia often enough don't test positive on the GI antibodies.  They may not have any GI symptoms sometimes.  They can also be more sensitive to gluten contamination that most celiacs.  and it can take longer for them to heal their nueral issues than a gut issue does.  Nerves just plain grow slowly in all people.  B vitamins are supposed to be helpful for healing nerves.


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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

#41 marco

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Posted 08 May 2013 - 01:28 PM

Hi Marco,

 

Yep, people with the nueral affects like gluten ataxia often enough don't test positive on the GI antibodies.  They may not have any GI symptoms sometimes.  They can also be more sensitive to gluten contamination that most celiacs.  and it can take longer for them to heal their nueral issues than a gut issue does.  Nerves just plain grow slowly in all people.  B vitamins are supposed to be helpful for healing nerves.

Thanks again for the reply, struggling to understand this all.

 

I know I was glutened yesterday and got reactions about an hour after, however the symptoms around my head which can be described as tingling and solidness behind the nose and a feeling that someone is clasping your face with their hands, it is not painful but very annoying and it makes you feel like their is trapped pressure in the face, it is such an uncomfortable and annoying feeling and so frustrating and hard to cope with, like a mild kind of torture.

 

So this feeling then dies down and the following night it comes back with avengance and possible worse than the initial reaction, why would that happen the following night or is this the toxins leaving the system again, as I was very careful not to eat gluten again after this episode.

 

very confusing.

 

Thanks Mark


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#42 GFinDC

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Posted 08 May 2013 - 04:31 PM

Hi Marco,

 

You could be having actual pressure in your sinus cavities.  I've had pretty active hayfever symptoms before, and they can cause that kind of pressure.  Why exactly is  a good question though.  A+ ! :)  After you have been on the gluten-free diet for a few months, it gets to be easier to identify the foods that cause reactions.  It's just something that takes some time to learn.  That's why eating a reduced number of foods is good, as it makes the process of identifying troublesome foods simpler.  If it is sinus pressure that's a good thing, compared to ataxia.  You could try some anti-histamines to see if they help your symptoms.  That might give you a better understanding of what's going on.


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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

#43 marco

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Posted 16 May 2013 - 04:24 AM

Hi again,

 

Not been on here for a few weeks as testing the diet, there is a definate pattern here. I have been on gluten free now for 4 weeks and think I have finally stumbled

on the problem, I actually think it is an intolerance to Barley and not wheat etc.

 

Is this actually possible can you actually have an intolerance to barley and not wheat and other gluten.

 

The reason I think this is I have now accidentally eaten foods twice that have only contained barley and not wheat.

 

I have some gluten free cornflakes and today I had cornflakes, it is all i had eaten and within a few hours I had fullness in ears, blocked nose

tingling around head and pressure around face, now I thought how can this be as the cornflakes are gluten free.

 

Then I realised I had eaten Kelloggs cornflakes by mistake, look at the label and there is only Barley in there.

 

When I had a blood test it said that there was not a problem with wheat but would the test also cover barley etc.

 

Thanks for all the help to date and i hope that my experience can help others with similar problems.


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#44 GFinDC

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Posted 16 May 2013 - 08:54 AM

Hi Marco,

 

Celiacs react to wheat, rye and barley.  Ten percent or so also react to oats.  Many of us also develop additional food intolerances, like corn, eggs, soy, nightshades etc.  You could have reacted to barley in the cornflakes, or to the corn, or to both.  That's the  tricky thing about figuring out food intolerances, you can have reactions to several ingredients in a food, not just one.  One way to determine a food intolerance is to test it in isolation.  So, instead of eating a cereal with multiple ingredients, eat all of the ingredients by themselves, one at a time, on separate days.  Preferably you should eat a test food ingredient for 3 days straight.   Then if you are feeling ok, try another food ingredient.  So, you could eat plain corn for 3 days, not the cereal.  The thing is though, you are too early in the gluten-free diet to have a good understanding of reactions IMHO.  While your gut is healing, you can have varied reactions that don't seem to make a lot of sense.  The early months of the gluten-free diet are about taking it easy on your digestive system, and giving it food that is easy to digest.  There are many possible up and downs during healing that may not mean a whole lot, except that you are going through the healing process.  Every time you consume gluten it re-ignites the autoimmune attack, and that can takes weeks or months to settle down.

 

You can also have an allergy to foods, instead of or as well as intolerances.  Allergies can be tested by your doctor or an allergist.  Allergies are not the same thing as food intolerances or celiac disease.  They are caused by a different type of immune cell, IgE.  But it is possible to have both.

 

 


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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

#45 carisima

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Posted 16 May 2013 - 04:51 PM

When I wake up in the morning i never wake up feeling refreshed it is like being hit by a truck, really hard to get up every morning and always with the hangover feelings. I am on gluten free diet for only second day but my symptoms seem worse today very bloked ears and feel very tearful. Does anyone recognise these as withdrawl symptoms, is it normal to feel bad or worse for a period. Thanks for the help. I also forgot to mention there is alot of tension in my body and i have these really dark periods where I feel like there is no hope etc.

Marco, in another forum, I learned that this is usually the die-off of "bad bacteria" in the gut that feeds off the undigested carbs from gluten.


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