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

[DistressedNewbie]

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!

[shadowicewolf]

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?

[DistressedNewbie]

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

[mushroom]

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.

[kareng]

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.

[mushroom]

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

[kareng]

Something from actual doctors to show your doc.

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[psawyer]

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.

[DistressedNewbie]

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;

[DistressedNewbie]

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

[kareng]

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.

 

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[DistressedNewbie]

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.

 

Open Original Shared Link

 

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.

[kareng]

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.

[Ollie's Mom]

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.

[nvsmom]

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.

[Pegleg84]

You should definitely be tested for Celiac.

If what you say, that your constipation, etc, cleared up after going (mostly) gluten free, then it seems that gluten definitely has something to do with it. Even if you aren't Celiac, if going gluten-free makes your Hashimoto's more manageable, then that should be reason enough.

 

For us Celiacs, even a tiny amount of gluten can make us sick for days. It might even take a couple days to show up, so eating completely gluten-free is the only way to go. If you don't have Celiac, then perhaps you can get away with a little bit on occasion, but not every day! If you do have Celiac, or if gluten is affecting your Hashimotos, then you could be doing continual damage to your immune system.

 

Yes, the gluten-free diet can be hard to adjust to, but if it makes you feel better, even in small ways, then its worth it.

 

Get tested!

Good luck

[Gemini]

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;

I have Celiac and Hashi's and wanted to clarify one thing.  The body does not mistake the thyroid gland as gluten.  If you do have Celiac Disease and go long enough without a diagnosis and keep eating gluten, the immune system does not just stop at destroying the small intestine, it looks to other tissue to attack because the autoimmune response never stops.  It also can attack other organs and tissue and this is why Celiac's can end up with multiple autoimmune diseases.  I am an expert on this...I have 4 AI diseases total.

 

What I have learned is that a gluten free diet "can" really help calm the thyroid down and lower antibodies.  Once you go gluten-free and stay that way and don't cheat, your immune system stops attacking your body and things get a lot better.  My thyroid antibodies were 1200 at one time, pre-Celiac diagnosis and now they are in the normal range....32, the last blood work showed. It sounds like you may have Celiac, from what you have said here but your doctor should have tested you.  You sound like you need a defintive diagnosis to stay on track with a gluten-free diet. Some people go gluten-free when they have thyroid disease but you need to be very disciplined with it and not cheat.  Maybe you should start eating gluten again and ask (demand) to be tested after a few months on a gluten binge?

[DistressedNewbie]

Hi everyone again, sorry for the late reply

 

Thank you all for your feedback

 

It seems that a lot here agree I should get tested for Celiac's. While I would love to know there really is a test out there that can tell me once and for all if I have this or not...why does my doctor say testing for Celiac's is not accurate?

 

If the test does come back negative, wouldn't there still be a big chance of having the disease or at least being what they call "gluten sensitive or intolerant"? Then I would just be back to square one, where I am now, where nobody knows for sure.

 

This is very difficult for me to go through right now with so much on my mind and my school nagging me to get a bunch of projects done. Not to mention I am weaning off of 7 years worth of antidepressants, which are giving me terrible withdrawal symptoms. I just don't know if I really am cut out to make this big change during such a stressful time. I never knew how much thought needed to go into something as simple as eating a single bite of food...i feel like I am going to go insane   haha

[Takala]

Nothing in life is absolute anyway, and celiac testing is the same (and rather crude at the current time).  Some doctors are recognizing the problems with the testing process itself missing a lot of people.   When you are sick enough, you don't really give a flying rat's patootie whether or not anyone else accepts your diet and you will be motivated enough to stick to it whether or not it is called celiac with official diagnosis or gluten intolerance - as long as it makes you feel much better.  Doesn't really matter, the diet is the same for sensitive gluten intolerants as it is for celiac's.    As for the decision making processes requiring a lot of thought, you shop 1x or 2x a week, usually for the same types of food, and then every thing is gluten free anyway that you've selected to be in your pantry and fridge anyway. 

[nvsmom]

Blood tests and endoscopies are considered very reliable for celiac disease.  The highest false negative rate I've ever heard for a test is 25% BUT if you have a few (or all) of the tests run, chances are that a bunch of tests will give you a reliable picture of whether you have it or not.

 

... Now the stool tests for celiac are not recognized as reliable - perhaps those are the tests that your doctor was referring to?

 

Also if you have a positive reaction to the diet, that would be further confirmation of a positive test.... That's pretty conclusive for a medical test.  

 

If it is too difficult of a time to fully embrace the gluten-free diet (after you've tested) start into it slowly. Take a few weeks, or even a month or two, to embrace the gluten-free diet. You won't feel better as soon (if gluten is an issue for you) but it might be a better way to go. Just make sure you have a gluten-free deadline set so you actually go gluten-free - gluten "light" does not really help.

 

I recommend keeping a food journal if you do this so you can take note of slowly improving symptoms as the gluten is cut out of your life.  Good luck.

[1desperateladysaved]

Dear Distressed,

 

Sorry about the hardships you are suffering.  I hope one day you will see the payoffs strong enough to think it was worth the grief.  I hope you will get over your depression, fatigue, and other hardships to recover your health.  I hope you will be able to stay awake longer and finish your school. I hope your parents will be sympathetic helpers with you. 

 

All these things, I hope, and pray for, and

 

Get Well  ****

 

Diana

[bartfull]

I'm confused. You say, "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."

 

But you claim you have no symptoms? Constipation or diarrhea, or alternating constipationa and diarrhea ARE the typical symptoms of celiac. Mucus in the stool is a symptom. You also say your periods stopped. That is ANOTHER symptom. And you say these things have cleared up on a gluten-free diet.

 

I understand how hard it is to accept it at first, but you, IMO, HAVE either celiac or NCGI. The sooner you accept it and commit to being gluten-free for life, the better you will feel and the sooner you will adjust to the diet. There are tons and tons of great tasting foods that are naturally gluten-free. Meats, potatoes, sweet potatoes, veggies, fruits, nuts. You can still eat some brands of potato chips, most flavors of ice creams, and when you need a bread fix, try Udi's multi-grain or Canyon Bakehouse. Udi's also makes the best tasting chocolate "muffins" I have ever had. I mean even gluten-filled cupcakes/muffins don't taste as good. There are gluten-free pizza crusts available so you can make your own pizza, and even a few pizza joints that make a SAFE gluten-free pizza. (NOT Domino's - they CALL it gluten-free, but it is NOT!)

 

Actually, eating in restaurants will be your biggest challenge, but you can overcome that. For your health's sake you may want to skip reataurants for a while, but eventually you may find some safe restaurants too.