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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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anonymous_123

Do I Have A Gluten Intolerance?

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Hi All,

I'm not sure what is wrong with me, but like a lot of stuff I read, doctors brush my symptoms off and tell me nothing is wrong with me. Here's a list of my symptoms...please tell me if it sounds like I have a gluten, wheat, and/or yeast intolerance:

-The past 2 years I have suffered from seasonal allergies, which I never had before.

-In August I broke out with major huge hives that started on my belly, then chest, then my back. Felt like the inside of my stomach was hot (toxic). That evening I had pizza and my stomach was hugely bloated. I also had two beers. That was at 5pm. Went to bed at 9pm and woke up at 11pm with hives. Went to emergency room, got steroids, pepcid, and antihistamines. Hives continued minimally throughout the first week even while on meds.

-I'm on a daily antihistamine now....zyrtec

-Get hives the day after drinking beer, feel horrible for at least a whole week after

-Major stomach bloating after eating sweets, bread, pizza, pasta, pretzels

-EXTREME fatigue, cannot get out of bed for work sometimes

-Cold feeling in chest/nose when I breathe sometimes.

-Cold hands and feet

-Rosy cheeks

-Tongue swelling

-Feel like my immune system is sensitive to everything, just don't feel well, lack of energy

-Too tired to exercise anymore

-Always feel run down

-Occassional diarhhea

-Was getting anxiety/panic attacks/muscle spasms before taking Zyrtec, stopped after taking Zyrtec (antihistamine)

-I was always consuming whole wheat bread, whole wheat english muffins, whole grain cereals, whole grain pasta, whole grain crackers......Could I have over done it and given myself some sort of intolerance??

Last year I had bloodwork done and my lymphs were slightly off and the dr. asked if I had an infection and I said no and he brushed it off as maybe I was just fighting off a cold or something.

Next week I will be getting bloodwork done again and tomorrow I am seeing a nutritionist b/c I am fed up with feeling like this. I've never ever felt this bad before. I am a 37 yr. old female by the way, 5'4" and 119 lbs. (I gained 6 lbs from not being able to exercise and from feeling so run down all the time)

Does any of this resemble symptoms of gluten intolerance or any other intolerance??

I talked to a friend of mine and he said problems start in the intestines and he recommended a soup/salad diet for a while, so I cut out all breads, pasta, sweets, pretzels, etc. I am now only eating fruit, soup, salad, rice cakes made with whole grain rice/popcorn that are gluten free, and organic blue corn chips, and nuts. I have to say my energy picked up and I do feel better, but I am really just wanting to know if any of you think I have an intolerance of some sort and if it sounds like a gluten intolerance. Please any advise is helpful or opinions...thanks so much!!!

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I am glad you are lookiing in to this. I think you can be helped. I am sorry you have suffered as you have. I knew that foggy, fatigued mind feeling. Mine is gone and has been for several weeks. I had to get really stringent with my diet. I keep adding things in as other things are ruled out, so actually I think my diet is more varied than it use to be. You have started a walk in the right direction, keep walking with your eyes and ears open.

I am a firm believer in protein food for each meal. I have come out ot the fog doing just that. Protein might be fish, chicken, nuts, beef, cheese, or yougart. You will find out which ones you tolerate over time. Your body will be needing lots of building materials.

Like I said, keep walking,

Do what you know and keep learning.

Get well,

Diana

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I am glad you are lookiing in to this. I think you can be helped. I am sorry you have suffered as you have. I knew that foggy, fatigued mind feeling. Mine is gone and has been for several weeks. I had to get really stringent with my diet. I keep adding things in as other things are ruled out, so actually I think my diet is more varied than it use to be. You have started a walk in the right direction, keep walking with your eyes and ears open.

I am a firm believer in protein food for each meal. I have come out ot the fog doing just that. Protein might be fish, chicken, nuts, beef, cheese, or yougart. You will find out which ones you tolerate over time. Your body will be needing lots of building materials.

Like I said, keep walking,

Do what you know and keep learning.

Get well,

Diana

Thank you! I will definitely start to pay more attention now to how my body reacts to the different foods and try to eliminate the ones that are bothering me. Right now I've eliminated a lot of stuff to eat and keeping it very simple. I will try to do that for a month and then start to incorporate some other foods as a test and see what happens. I guess an elimination diet is the only way to figure it out. I'm just happy that while on the soup/salad diet (i still have nuts, fruit, chicken in my soup) so far I am feeling a bit more energized. I'm also trying to wean myself off of Zyrtec and see what happens and if any other hives appear while eating the foods I am eating. It is frustrating, but I guess it is the only way to find out, since the doctors cannot answer my questions. Thanks for your kind words and I am glad to hear you are feeling much better!

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Leaky gut syndrome is caused (or can be caused) by gluten intolerance. Your gut normally has what is known as "tight junctions" which prevent undigested food getting into the blood stream. The food must be broken down by the digestive process into small enough fatty acid chains to make it through these tight junctions. When your intestinal lining is damaged it is comparable to the glue being used to hold your tight junctions together being partially dissolved, and larger particles are allowed through. Your body sets up an autoimmune reaction to these food particles because it does not recognize them, and you can then become intolerant of that food too if you keep on eating it.

It is for this reason that it is recommended that you take whatever steps you can (probiotics, digestive enzymes, L-glutamine, something else) to heal the intestinal lining, and that you keep rotating your foods and not eat too much of any one food, lest you become intolerant of it while you are healing.

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Leaky gut syndrome is caused (or can be caused) by gluten intolerance. Your gut normally has what is known as "tight junctions" which prevent undigested food getting into the blood stream. The food must be broken down by the digestive process into small enough fatty acid chains to make it through these tight junctions. When your intestinal lining is damaged it is comparable to the glue being used to hold your tight junctions together being partially dissolved, and larger particles are allowed through. Your body sets up an autoimmune reaction to these food particles because it does not recognize them, and you can then become intolerant of that food too if you keep on eating it.

It is for this reason that it is recommended that you take whatever steps you can (probiotics, digestive enzymes, L-glutamine, something else) to heal the intestinal lining, and that you keep rotating your foods and not eat too much of any one food, lest you become intolerant of it while you are healing.

Thanks so much for all that beneficial information!! I think I may have made myself intolerant b/c I was always eating whole grain and whole wheat products thinking it was healthy for me. Maybe I over did it. The good thing is I have not been bloated at all since eating soup, salad, nuts, blue corn chips, rice cakes made with popcorn & whole grain corn. My belly feels flat and it feels like such a relief. Although yesterday I figured, let me try a red potato with some butter and I did and I was fine, no bloating but I had a lot of sinus congestion last night. I was uncomfortabe and had to take more allergy meds. I thought maybe there is a chance it was from eating that starchy potato. The past two years I've had seasonal allergies that fluctuated. The first year I was allergic to all trees, ragweed, hamster, feathers, etc. Then I got retested the year later and it was only ragweed and dust. It's like my body is just saying hey I want to be allergic to this next year and then I'll pick up something else to be allergic to next year and so I just feel like I'm allergic to everything now and it's frustrating especially now b/c of this w/my tummy.

I'm wondering what your thoughts are on doing a detox? In the past I did a fiber detox which the company claims to assist with bloating and stomach problems. Is it a good idea to just test it out and if it bothers me then just don't do it again?

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Leaky gut syndrome is not a recognized medical condition and should not be confused with celiac disease. A number of diseases and infections can increase gut permeability, including celiac disease, but the importance of this change in permeability is not clear. Much less is known about non-celiac gluten sensitivity, but early research suggests that this condition is associated with a reduced gut permeability.

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Leaky gut syndrome is not a recognized medical condition and should not be confused with celiac disease. A number of diseases and infections can increase gut permeability, including celiac disease, but the importance of this change in permeability is not clear. Much less is known about non-celiac gluten sensitivity, but early research suggests that this condition is associated with a reduced gut permeability.

See this, from an interview with Dr. Alessio Fasano:

Zonulin, Intestinal Permeability and Autoimmune Disease

When we think about the intestine, most of us imagine a long tube from mouth to anus. What we don’t often think about is that the cells in the intestinal wall have doors or channels in between them. These doors can open and close. Dr. Fasano made the discovery that a molecule called zonulin is responsible for signaling the opening and closing of these doors in the intestine. When a person with celiac disease consumes gluten, a ton of zonulin gets produced, opening the doors in the intestine wall and allowing larger proteins such as gluten and other particles to enter the blood stream. The immune system in the blood stream becomes overwhelmed and creates an autoimmune response. Dr. Fasano explains the process below:

“What is the difference between everybody and the people that develop a problem with gluten like celiac disease is that while for me, for example, because I don’t have a problem. I eat a Big Mac. I have gluten in there. These fragments release zonulin, which increases permeability. Stuff comes through, including gluten. My immune system that is tuned to do the job right will clean up the mess, and I will not even know that all that happened. Also because this open-and-close is short. It’s a matter of minutes that it will open and a matter of minutes that will turn to be closed. People with celiac disease, on the other hand, when they do something like that, not only do they have much more zonulin produced than I do, but also the opening is much more prolonged because these doors get stuck open, and therefore you give much more time for substances from the environment, including gluten, to come through. And now on this other side, you find this immune system that is not tuned to do the job right, and when they see this enemy, they start to mount an immune response to attack your own body, and that leads to celiac disease.”

http://www.bouldernaturalhealth.com/blog/gluten-autoimmunity-and-leaky-gut-syndrome/

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I have a rash on my arm today. i'm not sure if it is from the soup/salad diet or from all the salt intake. I've been so frustrated and confused on what is going on with my body the past two years. I'm seeing my doctor on Tuesday for annual bloodwork. I've never been diagnosed with celiacs or leaky guy or any intolerances, but I believe from my symptoms that I have something. What can I ask my doctor in addition to telling him about all my symptoms? I'm guessing there is no need for panic?

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k, so i went to the dr today and he said he was taking bloodwork to test for celiac. i forgot to ask him how accurate the bloodwork test is. i've read there's a chance it won't show up. how do you accurately get diagnosed if you have it then?

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It seems about 75% of celiacs show up in the blood tests. Others are diagnosed by the biopsy. Some are thought to be a celiac after a positive response from the gluten-free diet, but it is unclear if those are celiacs or non-celiac gluten intolerants.... As I understand it anyways.

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It seems about 75% of celiacs show up in the blood tests. Others are diagnosed by the biopsy. Some are thought to be a celiac after a positive response from the gluten-free diet, but it is unclear if those are celiacs or non-celiac gluten intolerants.... As I understand it anyways.

thanks so much for your response! i haven't eaten much lately and feel better, but adding foods back into my diet are becoming difficult. anyway, my test was done after i stopped eating gluten and i heard that could make my results negative. i am sure something is going on though. last nite we made tacos at home. we use the ortega gluten free shells and we use lean chopped meat. my husband said he added seasoning to the meat, paprika, garlic powder, black pepper, franks hot sauce, & salsa. i also had salad and a couple pieces of gluten free and lactose free pepperjack cheese. i woke up around 1am nauseaus and my sinuses were completely clogged. i'm wondering if it was something in my tacos??

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ok so my bloodwork results came back and showed negative for celiac disease. but, i have not been eating any gluten for the past two weeks so that may be why it didn't show. i just couldn't bring myself to eat any of it for the test b/c it makes me feel horrible. yesterday i decided to eat one of my hubby's peanut butter granola bars and my stomach bloated for the next few hours. i kept asking myself why why did i eat that...i knew it was gonna bloat me as it always dose. but that was it for me. everyone was having pizza and i stuck to my chicken soup w/veggies and salad. it did have chicken noodles in it and only ate a couple but that could have also contributed to my bloating. anyway, i know so far what bothers me so i will just avoid the foods that do.

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I can't see anything in your tacos that had gluten in it. Perhaps the spices were bothering your inflamed gut?

It's possible that your trial of gluten-free eating caused a false negative on the celiac test. I think it is also possible that you suffer from Non-celiac Gluten Intolerance, which in my opinion seems worse because you have all of the same symptoms as a celiac (minus the intestinal damage) but no definitive blood test to tell you how to proceed in making yourself feel better.

You need to go gluten-free for a good 6 months without testing yourself on gluten containing foods. Even a miniscule amount, unseen to the eye, can cause a reaction; in that sense, one or two noodles is a LOT of gluten. For many of us, eating only the soup if noodles were cooked in it would make us sick. If you eat these small amounts of gluten you will not get the benefits of a gluten-free diet.Technically, you are on a "gluten-light" diet... It's almost like continuing to regularly smoke only the last centimetre of a cigarrette after you've quit smoking. You won't get the full health benefits of quitting. KWIM?

Good luck. I hope you feel well soon. :)

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I can't see anything in your tacos that had gluten in it. Perhaps the spices were bothering your inflamed gut?

It's possible that your trial of gluten-free eating caused a false negative on the celiac test. I think it is also possible that you suffer from Non-celiac Gluten Intolerance, which in my opinion seems worse because you have all of the same symptoms as a celiac (minus the intestinal damage) but no definitive blood test to tell you how to proceed in making yourself feel better.

You need to go gluten-free for a good 6 months without testing yourself on gluten containing foods. Even a miniscule amount, unseen to the eye, can cause a reaction; in that sense, one or two noodles is a LOT of gluten. For many of us, eating only the soup if noodles were cooked in it would make us sick. If you eat these small amounts of gluten you will not get the benefits of a gluten-free diet.Technically, you are on a "gluten-light" diet... It's almost like continuing to regularly smoke only the last centimetre of a cigarrette after you've quit smoking. You won't get the full health benefits of quitting. KWIM?

Good luck. I hope you feel well soon. :)

thanks nvsmom....i hadn't thought of it that way with the noodles being cooked and in the soup regardless of whether or not i had eaten the noodles or not. i definitely think i have some sort of gluten intolerance and some other intolerences as well. my stomach suffered for it today, i can tell you that much. so won't be eating anymore of those darn pb bars or noodles in my soup.

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I tested negative for blood antibodies at 2 weeks post gluten also. I remained "gluten free" but several weeks later, I tested positive. I did have some inssues with cross contamaination and surprise sources of gluten between the tests.

I forgot to mention that I have had many of the symptoms you mentioned having had. Fatigue, rosy cheeks, and cold hands and feet are among them. I can't see your list to continue the comparison.

I hope you will get some definative answers and will have the strength to overcome your problems.

Diana

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I tested negative for blood antibodies at 2 weeks post gluten also. I remained "gluten free" but several weeks later, I tested positive. I did have some inssues with cross contamaination and surprise sources of gluten between the tests.

I forgot to mention that I have had many of the symptoms you mentioned having had. Fatigue, rosy cheeks, and cold hands and feet are among them. I can't see your list to continue the comparison.

I hope you will get some definative answers and will have the strength to overcome your problems.

Diana

thanks diana. did you ask the dr to repeat the test? or did your dr recommend repeating the test 2 weeks later? how come you can't see the rest of my list of symptoms in my post?

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hi lil lil

im relatively new here and my symptoms are similar to yours, i was tested negative for celiac, but im convinced im wheat intolerant since reading all these posts. i too was eating everything "wholewheat" and think my body has just had enough of it. my doc is sending me for allergy testing - but it takes ages here on the nhs.

ive decided im going to do a wheat and dairy free trial, im just gathering everything im gonna need to do it for a month so i cant cheat.lol. ive even got some vanicream soap and lotion to see if i can get rid of this rash on my face. most people here seem to have a problem with dairy as well as wheat - maybe your lactose free cheese could have caused your sinus problems,the casein maybe? ( someone whos been here longer could possibly explain that a bit better) or could it have contained soy - that seems to be a problem for some as well . hope you manage to get things sorted , good luck.

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hi lil lil

im relatively new here and my symptoms are similar to yours, i was tested negative for celiac, but im convinced im wheat intolerant since reading all these posts. i too was eating everything "wholewheat" and think my body has just had enough of it. my doc is sending me for allergy testing - but it takes ages here on the nhs.

ive decided im going to do a wheat and dairy free trial, im just gathering everything im gonna need to do it for a month so i cant cheat.lol. ive even got some vanicream soap and lotion to see if i can get rid of this rash on my face. most people here seem to have a problem with dairy as well as wheat - maybe your lactose free cheese could have caused your sinus problems,the casein maybe? ( someone whos been here longer could possibly explain that a bit better) or could it have contained soy - that seems to be a problem for some as well . hope you manage to get things sorted , good luck.

thanks jhol! i hope you can manage your symptoms as well and i also wish you luck. i'll take a look at the cheese. i hadn't thought of that. it does say lactose and gluten free on the cheese.

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so my tummy has been torn up since eating that peanut butter granola bar and that soup from the pizza place with the noodles in it. i had it two days ago and my tummy still hasn't settled down. ugh!

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is whole grain rice ok if it says it is gluten free? or could the whole grain cause issues too? i'm so confused now.

what about going to the dentist if i am feeling run down? i really need to get my cleaning done and i have a filling that needs to be redone, but i've been putting it off for the past two years due to feeling like crap. any advice?

also, thoughts on doing a detox cleanse?

are these enzymes enough to help me? i take country life's tropical papaya enzyme.

it's been really difficult figuring out a diet. i've been living on eggs, whole grain gluten free rice cakes w/natural peanut butter (again not sure if the whole grain made from rice in the rice cakes are bad for my tummy or not if i have a wheat intolerance??), soups, salads, bananas, apples, almonds, chicken, other veggies like brocolli rabe, asparagus, etc. i'm not really sure what else won't irritate my belly. any advice on other snacks if i have gluten, wheat, yeast intolerance?

on a positive note....i think eating no carbs has helped with pms symptoms greatly....less cramps, less bloating, less irritability, etc. i noticed a big difference. i still felt weak and dizzy though.

thanks.

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thanks jhol! i hope you can manage your symptoms as well and i also wish you luck. i'll take a look at the cheese. i hadn't thought of that. it does say lactose and gluten free on the cheese.

also forgot to mention, i feel the same as you in that i got a negative test result to celiac but i do believe i also have a very strong intolerance. i just hope i can manage this so it doesn't get worse.

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just to say

ive also noticed more of a reaction when ive eaten something wholegrain rather than the "white" version.wholegrain tortillas make me feel odd and kinda spaced out.

i was thinkin of starting a new post on the subject but was worried the long term celiacs might shout for askin a really dumb question :unsure: lol. anyway shouldnt be a problem soon when i do my gluten challenge hopefully :rolleyes:

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k well i decided to try a cleanse/detox that i was speaking about in my thread and well i feel like crap. i did it for four days and had to stop. won't be doing that again. now it will probably take me like 2 weeks to recover. i think if i am ever going to detox, i will do it with whole foods and not a boxed supplement. it said it was gluten free so i thought it might be ok, but apparantly my body didn't think so.

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