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I Am Having A Hard Time Wrapping My Head Around This...


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#1 DistressedNewbie

 
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Posted 07 April 2013 - 11:08 AM

Why is it so bad to have gluten every once in a while if you experience no symptoms?


I am new to this whole "gluten free" lifestyle I must succumb myself to. I was recently diagnosed at the beginning this year with severe Hashimoto's thyroiditis (I know it's not Celiac's, but they are both both autoimmune diseases triggered by eating gluten and have many similarities) I am only 20 years old. Before I stopped eating gluten my entire day consisted of breads, pastas, snacks, etc;... it was a gigantic mess. So now, I have made a huge improvement and stay completely gluten free for each week...but always find myself having one meal on one day with a portion consisting of gluten, either because I am out somewhere and I am starving or I am just sick of having to suffer through this and crave it for psychological reasons. I feel no difference when I eat gluten.


But there are those out there, including my doctor, who freak out and say that you can't have ANY GLUTEN, even the tiniest crumb will destroy you and take years off your life!


Could someone please tell me, what is the difference between telling somebody to never eat gluten, not even the most miniscule amount, and saying someone with seasonal allergies must lock themselves up in a sterilized room and never step outside again? Aren't they both "immune responses"? Aren't they both a little extreme?


It would be great if you could provide links if you can, and information about the immune system and WHY it does this when you eat a tiny amount of gluten. I am new to this and don't understand why it is so bad to eat gluten on a rare occassion if you don't have symptoms. Please keep any insane emotional outbursts to yourself, such as "Because you WILL die!" <_< Scare tactics do not work on me. I am going through enough hell as it is having to give up every food I love.

 

Thank you very much for reading all this!


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#2 shadowicewolf

 
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Posted 07 April 2013 - 11:48 AM

For a celiac, it means that your gut will be harmed and that you have a higher risk of not healing, developing other conditions, etc.

 

For a non-celiac but gluten intolerant person, it means that they will feel sick whenever they eat it. As of right now, to my knowledge, there is not a lot of information out there that tells us what exactly NCGI does to a person.

 

Why eat something you know will make you sick?


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#3 DistressedNewbie

 
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Posted 07 April 2013 - 11:53 AM

For a celiac, it means that your gut will be harmed and that you have a higher risk of not healing, developing other conditions, etc.

 

For a non-celiac but gluten intolerant person, it means that they will feel sick whenever they eat it. As of right now, to my knowledge, there is not a lot of information out there that tells us what exactly NCGI does to a person.

 

Why eat something you know will make you sick?

 

Well that's the thing, it doesn't make me sick, unless I eat tons of it...at least to my knowledge. My doctor for the most part is just assuming that my problem is gluten based on statistics from other people who have the same disease. We really don't know for sure :(


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#4 mushroom

 
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Posted 07 April 2013 - 12:06 PM

Seasonal allergies like hayfever are, well, allergies.  Celiac disease is an autoimmune reaction in the body, causing it to  mistakenly attack itself.  You may not feel it at work in your body (silent celiac is not uncommon.  The sufferer of silent celiac may feel they are fortunate not to have symptoms and may well feel free to cheat, but actually they are at a disadvantage because they cannot tell when they have ingested gluten and are therefore harming themselves.)

 

And I say "harming" because whemever the body is attacking itself it is doing some damage.  It may be many years before you know what that damage is.  For me, I ended up with psoriatic arthritis, a combination of psoriasis and rheumatoid arthritis.  This is not because I willfully ate gluten knowing I shouldn't, but rather because I was undiagnosed all that time and did not know I was putting myself at risk.

 

It is not for us to tell you not to do something which you already know you should not be doing.  I believe you have to take responsibility for your own body and your own health.  You may follow medical advice, or choose not to, at your own discretion.  But before you choose to reject it I would suggest that you do a lot of reading about celiac disease and make an informed decision.  If you wish to risk major complications down the road a ways, that must be your decision alone.  You have already told us you don't listen to scare tactics from others so I won't give you any more.  But I do suggest you educate yourself about the risks you are taking.

 

We have all been through the gluten withdrawal, the giving up the things we love (believe it or not, if you do decide to eat gluten free you will find other things you love just as much, and will expand your food horizons in a healthy fashion), and coped with the difficulties a celiac diagnosis brings.  I do admit to you it must be harder when you are not receiving any instant feedback that what you are doing is the right thing.  For most of us, the gluten = pain and suffering is a strong reinforcer to stay on the straight and narrow :)    Nevertheless, it is what it is, and so long as you continue to eat gluten you continue to play with fire.

 

I wish you good health and the strength of will to take care of your body.   Oh, and welcome to the forum. :)


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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#5 kareng

 
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Posted 07 April 2013 - 12:06 PM

Not sure why you say Hashimoto's is triggered by gluten? I haven't seen that. I know some do better off gluten. Some have Celiac. Why won't your doctor test you for Celiac? You would need to eat gluten again for that.
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LTES

 
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#6 mushroom

 
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Posted 07 April 2013 - 12:07 PM

Oh, so you mean your doctor has not tested you for celiac disease? :huh:


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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#7 kareng

 
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Posted 07 April 2013 - 12:09 PM

Something from actual doctors to show your doc.

http://www.curecelia...-celiac-disease


http://www.curecelia...-celiac-disease

http://www.mayoclini...DSECTION=causes
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LTES

 
"We've waited 29 years for this and not even a Giant can stand in our way." - Mayor Sly James
 
 
 
 
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#8 psawyer

 
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Posted 07 April 2013 - 12:15 PM

Welcome to our online support community.
 
I have seasonal allergies as well as celiac disease. They are very different conditions, although they are both responses of the immune system.
 
In autoimmune diseases, the body attacks itself, doing damage to healthy tissue. Damage is done. Some can heal, but some is permanent. Celiac disease is unusual among autoimmune conditions because the trigger (gluten) is known and can be eliminated from the diet. The vast majority of people heal through strict adherence to the diet.
 
When the body detects gluten, it produces antibodies in response. Those antibodies chiefly attack the lining of the small intestine, Those antibodies are produced in quick response, but linger in the system for some time--as much as three weeks has been credibly suggested. During that time, they continue to do damage, even though the gluten is long gone. When the antibody level drops low enough, the damage begins to heal--a process that can take months. With that in mind, eating regular pizza once a week will keep the damage going on continuously. The only way to stop the cycle is to eliminate gluten completely.
 
You will get exposed to trace amounts of gluten from time to time. The world is not perfect, but as long as the body's healing processes are working faster than the antibodies, you will experience a minor setback, not the end of the world.
 
Seasonal allergies are quite different. The symptoms, while unpleasant, do not do any damage to healthy tissue. Histamine, the substance causing the reaction, has a short lifespan in the body, unlike antibodies. There are drugs available to reduce the histamine response.
 
In rare cases, a histamine reaction can be very serious, when it involves anaphylaxis. This is typically a food allergy, although bee stings and other insect-related triggers are known.

It is hard when you have no symptoms to understand that damage is nonetheless being done. If you continue to eat gluten, you may well progress to the point where the damage does cause noticeable symptoms.

And there may be a craving associated with cutting out gluten. There are similarities between haw wheat gluten affects the brain and how opiates do.

EDIT: I was interrupted while writing this, and all of the responses above were made while I was composing.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#9 DistressedNewbie

 
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Posted 07 April 2013 - 12:24 PM

Thanks for the replies! :)

 

Yes, that is correct- I have not been tested for Celiac disease. Hashimoto's Hypothyroidism, from what I have read and from what my doctor tells me, is linked to gluten sensitivity because supposedly our bodies mistake the thyroid for being gluten and begin to attack it, since they are very similar in chemical makeup. It is strange, I know. I have had digestive problems all my life as well, mostly constipation (I won't go for 4-5 days straight sometimes) with the occassional random attack of severe intestinal cramping and diarrhea. However since I stopped eating gluten, I haven't had one of those attacks in a long time and the mucus that used to appear in my stool has disappeared.

 

My doctor says there is no accurate test for celiac disease...? He says the only sure way to find out is to be completely off of it for a long time, and then introduce it again to see if it I feel any symptoms. It is unfortunate that I don't get any symptoms like Mushroom said...because in the back of my mind I don't know for sure if this is my problem. But my doctor has no doubt in his mind that this is what is causing me to feel constantly tired, weak, etc;


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#10 DistressedNewbie

 
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Posted 07 April 2013 - 12:32 PM

Welcome to our online support community.
 
I have seasonal allergies as well as celiac disease. They are very different conditions, although they are both responses of the immune system.
 
In autoimmune diseases, the body attacks itself, doing damage to healthy tissue. Damage is done. Some can heal, but some is permanent. Celiac disease is unusual among autoimmune conditions because the trigger (gluten) is known and can be eliminated from the diet. The vast majority of people heal through strict adherence to the diet.
 
When the body detects gluten, it produces antibodies in response. Those antibodies chiefly attack the lining of the small intestine, Those antibodies are produced in quick response, but linger in the system for some time--as much as three weeks has been credibly suggested. During that time, they continue to do damage, even though the gluten is long gone. When the antibody level drops low enough, the damage begins to heal--a process that can take months. With that in mind, eating regular pizza once a week will keep the damage going on continuously. The only way to stop the cycle is to eliminate gluten completely.
 
You will get exposed to trace amounts of gluten from time to time. The world is not perfect, but as long as the body's healing processes are working faster than the antibodies, you will experience a minor setback, not the end of the world.
 
Seasonal allergies are quite different. The symptoms, while unpleasant, do not do any damage to healthy tissue. Histamine, the substance causing the reaction, has a short lifespan in the body, unlike antibodies. There are drugs available to reduce the histamine response.
 
In rare cases, a histamine reaction can be very serious, when it involves anaphylaxis. This is typically a food allergy, although bee stings and other insect-related triggers are known.

It is hard when you have no symptoms to understand that damage is nonetheless being done. If you continue to eat gluten, you may well progress to the point where the damage does cause noticeable symptoms.

And there may be a craving associated with cutting out gluten. There are similarities between haw wheat gluten affects the brain and how opiates do.

EDIT: I was interrupted while writing this, and all of the responses above were made while I was composing.


This is very informative, thank you! I just wish I was able to get an explanation like this sooner. I had no idea gluten antibodies continued to stay in the body even long after one stops exposing themselves to it. I didn't even know there was such a big difference between an autoimmune attack and allergies...I really need to start getting my facts on the immune system straight :wacko:


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#11 kareng

 
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Posted 07 April 2013 - 12:35 PM

Did he do an actual blood test for your Hashis?  I'm getting a feeling that your doc might be some alternative quack. It makes me mad how some of these "doctors" and sometimes MD doctors spout nonsense that is not based in medical fact.

 

I gave you a couple of links.  Mayo clinic does not say gluten antibodies attack the thyroid.  You might read some info on the internet from "real" medical doctors and facilities about your Hashimoto's.

 

Please look at the Univ of Chicago Celiac Center website.  Lots of easy to understand info on Celiac and testing.  There are very accurate blood work for Celiac Disease.  You do have to be eating gluten first for the tests to be accurate.

 

http://www.cureceliacdisease.org/


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LTES

 
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#12 DistressedNewbie

 
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Posted 07 April 2013 - 01:07 PM

Did he do an actual blood test for your Hashis?  I'm getting a feeling that your doc might be some alternative quack. It makes me mad how some of these "doctors" and sometimes MD doctors spout nonsense that is not based in medical fact.

 

I gave you a couple of links.  Mayo clinic does not say gluten antibodies attack the thyroid.  You might read some info on the internet from "real" medical doctors and facilities about your Hashimoto's.

 

Please look at the Univ of Chicago Celiac Center website.  Lots of easy to understand info on Celiac and testing.  There are very accurate blood work for Celiac Disease.  You do have to be eating gluten first for the tests to be accurate.

 

http://www.cureceliacdisease.org/

 

Yes I have had a blood test for Hashimoto's. My antibodies were extremely high and my TSH was a bit high (not to mention I have had terrible symptoms of it for years and it runs in my family).

 

The one link I clicked on that says "Who should be tested for celiac disease", I fit much of that criteria.

 

My doctor has an MD, but he integrates alternative practices with standard medical practices. Every doctor I have been to before him that was considered "real" (and I've been to so many I can't even remember the exact number) didn't know a damned thing about my condition and I was even misdiagnosed as narcoleptic! Just because someone has credentials doesn't always make them qualified in the least ;) He seems to be the only one that completely understands what I am going through, and has many patients who are exactly like me and have improved significantly off gluten. Once they have been off gluten for a while, their thyroid antibodies decrease.

 

There are studies out there that have found this link between gluten causing other problems in the body other than just the digestive track. I believe one was done by the University of Maryland. Sorry I can't say for sure the name of the studies, but I would like to know this information as well :/
 

My body is clearly trying to tell me something is very very wrong. I have lost my periods, can only stay awake for about 8 hours each day (i've been like that for a long time and almost couldn't graduate high school because of it) my muscles are sore and always stiff, my heart rate beats at around 120 bpm constantly...I can go on and on. No healthy person at my age should be going through this. So I have no other choice but to try this gluten free diet and hope that I have found the culprit, because surely nobody else has found it for me yet.


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#13 kareng

 
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Posted 07 April 2013 - 01:44 PM

I understand that many with Hashimoto's feel better gluten-free. That does not mean that gluten causes antibodies to attack the thyroid and that is the cause of it.

Anyway....seems like he really should have tested you for Celiac so you know what you are dealing with. You will know what follow- up you need, how careful you need to be, etc.
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#14 Ollie's Mom

 
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Posted 07 April 2013 - 03:34 PM

If I were you, I'd get the blood tests done for celiac disease. Others here can list the full celiac panel for you to take to your doctor. This would require you to be on a full-gluten filled diet in the weeks / months leading up to testing. Since your reactions from eating gluten are silent (for now?) you could do this with little discomfort (unlike many of us here). Then at least you'd have some celiac test results. While not 100% accurate (false negatives are not uncommon) you may test positive.
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#15 nvsmom

 
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Posted 07 April 2013 - 04:41 PM

As I understand it, gluten sensitivity, whether it is non-celiac gluten intolerance (NCGI) or celiac disease, causes a great deal of inflammation in the body. That inflammation can make some health conditions worse, and this includes other autoimmune diseases like Hashimoto's. I don't think it causes the disease, but it gives it a nudge to get going (or get worse) sort of like mono or pregnancy can do in some people.

 

I've heard that theory about thyroid hormones or glands being similar to gluten which is (supposedly) why gluten is sometimes attributed with causing Hashi's... I'm not sure I believe it though because I think there would be a LOT more celiacs with Hashi's, if not all, rather than the estimated 10% of celiacs with hashi's... But who knows -  I have both problems too.  :)

 

Anyways, that inflammation is thought to contribute to a whole host of health problems and discomfort the longer you maintain the unhealthy level of inflammtion.... That's my scare tactic for you.  ;)

 

I agree with Ollie's mom that you might want to consider getting the celiac blood testing done, and maybe the biopsy. Many people find it helpful to stay on the diet once you know for sure. On the other hand, if you test negative then you are back in the same boat and have to consider the idea of NCGI and a gluten-free trial of at least 4-6 months.

 

If you want to look into the blood tests they are:

ttg IgA and ttg IgG

DGP IgA and DGP IgG

total serum IgA

EMA IgA

AGA IgA and AGA IgG (these are older tests)

 

Stool tests are thought to be less reliable.

 

Good luck with whatever you decide to do.


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