Celiac Disease Questions And Help Please

[KerryLad]

hi there im new here joined today...
My story is for a few months not i have being having stinging in my intestines and i used just take no notice of it and left it off have it happening on and off over 6 months.. but recently i went out paddys night drank carlsburg and i was very sick after it with stomach and intestines was sick for a week got better was great for a week and went to mcdonalds a friday night stinging again and then pins and needles in hands went away same sunday night got mcdonalds again and bang pins and needles full on in left hand and right hand and kinda on my lip i have being having cramps and awful stinging in my intestines after some foods went to doctor and he did full bloods and testing for celiac my bloods came back all normal waiting for celiac seems the intestines stinging is a thing for celiac pins and needles kinda went and weekend i was away had a fry and ate taytos etc and came back at me again with stomach cramps in the mornings is this a sign of it anyone get the same synthoms??? only started latelly when i drink morning after i get it i dont drink often only once ever y6 weeks i say in general my diet is awful with chipper food any ideas are welcome thanks

[GF Lover]

Hi Kerrylad.  IMH, It looks like a whole lot of fat is in your diet, although I don't know what "chipper" food is.  If your symptoms don't improve with cutting out some fat and lots of water, then maybe look closer at your whole diet, vitamin and mineral levels and general overall health.

 

I hope things resolve for you.

 

Colleen 

[KerryLad]

hi there my bloods came back clear today for celiac leaving me wonder what it is pins and needles in hands feeling sick after eating intestines stinging for the last few months like... chipper food is burgers and chips and mcdonalds alot all bad food diet for years like is there a way that u can be celiac and not show on tests or senceatif to wheat or something ??

[kareng]

Maybe its not Celiac but your awful diet?  Try to eat better - less fried & fatty stuff, add a vegetable or some fruits that aren't fried or sauced or cheese covered?  The lack of fiber in your diet and excess fat are hard on your intestines.

[KerryLad]

my intestines seem to be stinging and burning in intestine like and the pins and needles are cracking me up like... should i go on a wheat free diet?? need all the help i can get like??

[KerryLad]

was kinda thinking if i was even celiac it burns the intestines so if what im eating is burning and irritating the intestine i need to just heal it and all will heal up maybe and pins and needles will go?

[KerryLad]

just had 4 biscuits and the stinging in intestines has started again maybe its inflamed and irrating it 

[GF Lover]

Don't think 4 biscuits at one time is ever a good idea.  If you think you may have Celiac, you should ask your Doctor to run the appropriate tests.

[GFinDC]

HI Kerrylad,

 

Since your test results are negative you may as well try the gluten-free diet for a few months and see what happens.  Celiac disease is an autoimmune disease and you need to avoid even tiny amounts of gluten to stop the autoimmune reaction.  It can take weeks to months for the immune reactions to stop.  So cheating once a week or so will keep it from ever stopping.  You will need to avoid any wheat, rye, and barley.  You should also avoid oats at first.  I suggest you write down your symptoms first and then compare them to how you feel after 3 months.  It wouldn't hurt to record your blood pressure, glucose, heart rate and weight also.  Just an interesting set of info to compare later.

[KerryLad]

hi there lads i woke up today and felt my left hand where the pins and needles are worse my wrist was really sore when i move it this never ever happens me like... i went for my lunch today and i had potatoes veg and salmon woth pastry around it with some sause i took off the pastry and the wipped the sause i had it anyway left the restraunt and then bang felt like getting sick and intestines unconfortable and stinging its what im eating is doing all this just cant point my finger on it all my results came back clear bloods unreal celiac clear. not dibieies... its really getting me down cause the pins and needles are awful i was sick with my stomach before and while i was the pins and needles were there but went away there here with a bang now any help needed please  

[mushroom]

It's becoming pretty clear it's the gluten, regardless of what the test results say.  That food you ate was contaminated, regardless of whether or not you actually ate the pastry, and who knows what was in the sauce???

 

The verdict looks likely to be either non-celiac gluten intolerant, or else still celiac despite the tests, since those with primarily neurologic symptoms often test negative on the celiac tests because they are designed to look for the more gastro manifestations.  This includes the endoscopy with biopsies in the small intestine.

 

As GFinDC says, you can't do an attempt at somewhat gluten free -- it has to be all the way, or nothing.  It will take a while to learn how to do real gluten free, but this is your first lesson - taking the pastry off and trying not to eat the sauce is not eating gluten free because anything that sauce and pastry has touched is contaminated.

[KerryLad]

It's becoming pretty clear it's the gluten, regardless of what the test results say.  That food you ate was contaminated, regardless of whether or not you actually ate the pastry, and who knows what was in the sauce???

 

The verdict looks likely to be either non-celiac gluten intolerant, or else still celiac despite the tests, since those with primarily neurologic symptoms often test negative on the celiac tests because they are designed to look for the more gastro manifestations.  This includes the endoscopy with biopsies in the small intestine.

 

As GFinDC says, you can't do an attempt at somewhat gluten free -- it has to be all the way, or nothing.  It will take a while to learn how to do real gluten free, but this is your first lesson - taking the pastry off and trying not to eat the sauce is not eating gluten free because anything that sauce and pastry has touched is contaminated.

thanks for reply i think u might be right think the salmon was prob cooked with the pastry on it like and god knows what the sause was like... the last 2 days my left wrist is after getting really sore and hurting me alot same hand pins and needles are in alot and i do weights alot and never have issues with wrist and have not trained in 6 weeks due to this cracked up 

[GFinDC]

Hi Kerrylad,

 

Just guessing you are in Ireland?

 

Eating in restraunts is a bad idea of you are just starting out on the gluten-free diet.  Most are not safe for celiacs.  Some restraunts do have gluten-free menus but you should still wait until your body has adapted to the gluten-free diet and you have learned how to avoid cross contamination before trying to eat out. And that is not a 5 minute process to learn those things.  You should mostly eat food you cook yourself from scratch at first, using whole ingredients.  That way you learn what ingredients are safe for you and begin to understand how your body reacts to different foods.  Nightshades, (peppers, tomatoes, potatoes, and eggplant) are  known to cause joint paint for some people.  They contain alkaloids that are not easily processed by your liver.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

 

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

[KerryLad]

Hi Kerrylad,

 

Just guessing you are in Ireland?

 

Eating in restraunts is a bad idea of you are just starting out on the gluten-free diet.  Most are not safe for celiacs.  Some restraunts do have gluten-free menus but you should still wait until your body has adapted to the gluten-free diet and you have learned how to avoid cross contamination before trying to eat out. And that is not a 5 minute process to learn those things.  You should mostly eat food you cook yourself from scratch at first, using whole ingredients.  That way you learn what ingredients are safe for you and begin to understand how your body reacts to different foods.  Nightshades, (peppers, tomatoes, potatoes, and eggplant) are  known to cause joint paint for some people.  They contain alkaloids that are not easily processed by your liver.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

 

Helpful threads:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/

thanks very much for your reply yes im from ireland... had my bloods done and all came back perfect like i take vitamins every single day and they are dairy gluten free etc..... and take acidodolphis cant spell it sorry..... ended up getting another mouth ulser in my mouth yesterday second in a week. i started a gluten free diet yesterday was my first day i think i avoided it completly besides not knowing it was in a few things i was eating i have to say its tuff like all the gluten free stuff tastes like sandpaper one question how long does it take for all gluten to clear out of body and synthums to clear thanks?? 

[GFinDC]

thanks very much for your reply yes im from ireland... had my bloods done and all came back perfect like i take vitamins every single day and they are dairy gluten free etc..... and take acidodolphis cant spell it sorry..... ended up getting another mouth ulser in my mouth yesterday second in a week. i started a gluten free diet yesterday was my first day i think i avoided it completly besides not knowing it was in a few things i was eating i have to say its tuff like all the gluten free stuff tastes like sandpaper one question how long does it take for all gluten to clear out of body and synthums to clear thanks?? 

 

Cool, Ireland is a beautiful country!  I used to get those mouth ulcers fairly often myself, but haven't had one in quite a while.  I guess its one of those thing that went away with gluten-free although I just didn't notice it.  Yep, gluten is in a whole lot of the processed foods these days.  You really need to learn to check labels every time you buy something.  It gets to be a habit after a while.

 

Time for improvement varies and awful lot between people.  Some people feel improvements within a few days, for others it can take months to even longer.  Gluten doesn't hang around in your body a long time.  What does take time is for the antibody reactions to die down.Think about measles.  You get exposed to measles once and you become immune to it for life because every time you are exposed to the germs your body kicks up a storm of antibodies and kills them all.  If it stopped that attack too soon you might still be in an area that has measles germs and get reinfected.  So it keeps making antibodies for a while even after the immediate threat is gone.  But any time you are re-exposed the immune system will go on full alert again and start attacking.

 

You are right, some of the gluten-free baked goods have a poor taste compared to gluteny versions.  But some are pretty good too.   You should mostly not eat those type of things at the beginning of the gluten-free diet anyway.  It is better to eat whole foods instead and just avoid the processed foods, including gluten-free baked goods. 

[KerryLad]

Cool, Ireland is a beautiful country!  I used to get those mouth ulcers fairly often myself, but haven't had one in quite a while.  I guess its one of those thing that went away with gluten-free although I just didn't notice it.  Yep, gluten is in a whole lot of the processed foods these days.  You really need to learn to check labels every time you buy something.  It gets to be a habit after a while.

 

Time for improvement varies and awful lot between people.  Some people feel improvements within a few days, for others it can take months to even longer.  Gluten doesn't hang around in your body a long time.  What does take time is for the antibody reactions to die down.Think about measles.  You get exposed to measles once and you become immune to it for life because every time you are exposed to the germs your body kicks up a storm of antibodies and kills them all.  If it stopped that attack too soon you might still be in an area that has measles germs and get reinfected.  So it keeps making antibodies for a while even after the immediate threat is gone.  But any time you are re-exposed the immune system will go on full alert again and start attacking.

 

You are right, some of the gluten-free baked goods have a poor taste compared to gluteny versions.  But some are pretty good too.   You should mostly not eat those type of things at the beginning of the gluten-free diet anyway.  It is better to eat whole foods instead and just avoid the processed foods, including gluten-free baked goods. 

i had the camera down 2011 and had the celiac test done and that came back negitive as well could that have changed in 2 years? nad i could have became one ?

[GFinDC]

i had the camera down 2011 and had the celiac test done and that came back negitive as well could that have changed in 2 years? nad i could have became one ?

 

Hi Kerrylad,

 

Yes, you can develop celiac disease at any time of life.  It is learned autoimmune response, just like your bodies immune system learns to respond to germs.  If you have the genes for celiac disease, it can be triggered at any time, as a child, an adult or even people in their 80's sometimes develop it.  there are also other gluten related illnesses that are recently discovered.  The links below describe them.  You won't

 find any testing for these conditions yet, as they are too new.

 

Non-celiac wheat sensitivity article

https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Innate immune response in AI diseases

https://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html

[KerryLad]

does anyone know how to avoid wheat and gluten if u wash kknifes and forks and plates is it safe and if u cook chicken in the oven is it ok where other stuff was cooked before it ?