What Are The Consequences Of A Lax Approach To The gluten-free Diet?

BlessedMommy · February 17, 2014

I shared my story in another thread, I don't have an actual celiac diagnosis because my symptoms resolved when I went gluten-free and then I resumed eating gluten and had a TIA (ministroke) resulting from chronic and persistent headaches while on the gluten trial. My TIA occurred after a mere 10 days on the gluten trial.

My husband told me that I wasn't ever allowed to trial gluten again and my doctor agreed that the gluten was the cause of the TIA. So off to GFland I went for good. That was 4 years ago and I committed to being gluten-free for life at that point, diagnosis or not. I figured that frankly, even if my celiac tests came back negative or inconclusive there's no way that I would eat gluten again. I'm too young to risk having a stroke!

What I want to know is what are the consequences of being sloppy with the gluten-free diet? It's my understanding that celiac or not, I have an increased risk of cancer and other complications if I eat gluten when I'm obviously severely intolerant to it. Is that correct?

The reason why I ask is that I get a little weary of people thinking that I'm extreme for going out of my way to prevent cross contamination and wanted some evidence to share with those who don't think that getting my gluten-free food contaminated is that big of a deal.

cristiana · February 17, 2014

Hi BlessedMommy

So understand about your feeling weary of people's reactions.

Although I actually did end up being diagnosed with celiac disease a few months ago the journey that led to DX was scary - terrible anxiety that came from nowhere, a liver function test that showed I had elevated globulin levels that indicated something nasty could be going on. I also had anemia. It wasn't clear what was wrong at that point but my Doctor wondered if it might be a type of cancer. So like you, with your TIA, a scary lead up experience.

Eventually the classic gastric symptoms started so that was when some months later I was tested for Celiac. Turns out that when I went gluten free, my blood went back to normal and my anxiety subsided. I then bought a book called Celiac Disease for Dummies and saw that all sorts of strange things happen if you are a Celiac and eat gluten, and that book makes it very clear that persisting in eating it can cause the various things you mention.

I do have Celiac friends, recently diagnosed, who did not get so ill prior to diagnosis. It was diarrhea that led to a fairly prompt Celiac diagnosis in their cases and whilst they have gone gluten free they have not been too strict about it. For example, eating oats that aren't pure, eating cereals with malt in. I just don't think their pre-diagnosis experience was as scary as mine! For that reason they haven't joined, say, a forum like this, nor have they really read around the subject. I think because I was so scared by the pre-diagnosis experience, I have taken it very seriously since! I try to share with one of them and she just tells me that she doesn't have Celiac as bad as me!

I ought to buy them that book I guess. Perhaps that's the answer... if you come up against someone who doesn't think it is that much of a deal offer to lend them a book on the subject.

ravenwoodglass · February 17, 2014

Well the biggest risk for you seems to be a full blown stroke.

As to other possible risks cancer is one, as well as impact to parts of your body you might never expect like your joints and muscles, liver, heart, kidneys and more. Reactions cause inflammation and that can attack pretty much any organ in your body.

Do keep yourself safe and stay away from the thoughts of 'cheating' on the diet.

mamaw · February 17, 2014

I love the book by Cleo Libonati, RN,BSN called"Recognizing celiac disease" It has been around for many years but oh what an insight on celiac..... it may be over kill for some but it tells it all....it may be over a lay person's knowledge or even caring to know but I love it...No bars held back....here..

For people who are so called friends , only you know what you have been through & you only need to take care of your well-being... you owe no one except you an explanation .. I also had a several TIA's before my Dx's but never knew why at a young age 33 that was happening to me....plus other weird things that just didn't make much sense...

And I agree with your husband ,, no more gluten ........if people can't accept you for the way you are & your lifestyle then its time to find considerate new buddies..... hard core yes, but the truth...no one needs another critic......

Keep moving on ....

cheating is a form of failure, please don't cheat there can be worse things happen to you......totally not worth the risk....

cahill · February 17, 2014

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the list of consequences of continuing to ingest gluten for someone that is gluten intolerant or celiac is mindbogglingly ( and more than a bit scary :ph34r: )

BlessedMommy · February 17, 2014

Thanks for the feedback! I will read through that list.

Having a TIA at age 27 was pretty terrifying! Definitely not anything that I want a repeat of.

My doctor said though that that happened because I had a lot of gluten (i.e. 10 days worth.)

My thoughts though is that I don't know what level of gluten could cause a TIA in the future, so not worth taking a gamble on.

kareng · February 17, 2014

Thanks for the feedback! I will read through that list.

Having a TIA at age 27 was pretty terrifying! Definitely not anything that I want a repeat of.

My doctor said though that that happened because I had a lot of gluten (i.e. 10 days worth.)

My thoughts though is that I don't know what level of gluten could cause a TIA in the future, so not worth taking a gamble on.

I don't know what level of arsenic will kill me, but I don't think I will take the chance.

A stroke at any age is scary! Another stroke at 30 would be even more scary!

glutenfreeliac · February 17, 2014

Diagnosis or not, you clearly have an issue with gluten. All things considered, your high level of caution is justified. Cross-contamination *is* a big deal, and, personally, I don't think you need to worry about justifying anything. Anything that destroys your inability to absorb nutrients from food, much less could lead to a stroke, will have a long-term impact on your health.

NoGlutenCooties · February 18, 2014

Just wanted to add that while you don't know if your body might be able to handle small amounts of cross-contamination, think about the consequences of being wrong. Oops... must have had a bit too much because I had a full blown stroke and now I'm permanently paralyzed on one side. :huh: Even with being super careful there is always a chance to get cross-contaminated at some point. Why do it on purpose?

GFinDC · February 18, 2014

Hi BM,

It might help to think about the basics of celiac disease. Celiac is an autoimmune disease. That means the bodies own immune system attacks it. The immune system is very sensitive, and doesn't mind attacking in force any forgein, dangerous invaders like germs or gluten. And it doesn't stop making immune cells to attack until the invaders are dead, their children, their grandchildren, and the horse they rode in on. It can take weeks to months for the immune response to taper off. So if you are exposed to gluten every couple weeks in even small amounts, the immune reaction never stops.

You might not have heard of gluten ataxia. Gluten ataxia is when gluten attacks the brain and causes damage resulting in problems with walking and coordination, speech, etc. Gluten can affect any part of the body.

You might ask your friends how much anthrax or measles they would be willing to eat.

Remember, they aren't risking anything health wise by encouraging you to eat gluten. They are scott-free whlie you suffer the consequences. Maybe they aren't really friends.

Dr. Hadjivassiliou has done reseacrh on gluten ataxia.

Nuerological symptoms without gastro symptoms
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Dietary treatment of gluten ataxia
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eers03 · February 22, 2014

It takes 1/8 of 1 teaspoon to create a chemical response in your body to Gluten whether you feel that effect or not--it's there. I have seen research (although I can't cite it, sorry) that said eating (1) cheat meal per month increases the mortality of someone with celiac disease by 600% in long term studies.

It seems like I found these stats on a .gov site. The point is this, don't be lax or cheat if you are Celiac. Ever. Ever. Ever.

NoGlutenCooties · February 22, 2014

eating (1) cheat meal per month increases the mortality of someone with celiac disease by 600% in long term studies.

Holy sh*t! Not that I would ever cheat... but this really brings it home. :ph34r:

ArPlasma · February 25, 2014

It takes 1/8 of 1 teaspoon to create a chemical response in your body to Gluten whether you feel that effect or not--it's there. I have seen research (although I can't cite it, sorry) that said eating (1) cheat meal per month increases the mortality of someone with celiac disease by 600% in long term studies.

It seems like I found these stats on a .gov site. The point is this, don't be lax or cheat if you are Celiac. Ever. Ever. Ever.

Eers03 if you ever find the ref for this it would be great. I am looking for numbers/ studies for asymptomatic diagnosed Celiac who go untreated. My DH just went through his biopsy and under the guide of some family members ( who have IBS and all sort of crazy GI issues btw but 'don't think they have anything') is backtracking on the gluten-free diet. Our son just got officially diagnosed( biopsy confirmed). Since DH blood levels are lower than DS( who was very symptomatic in retrospect), he thinks it can't be that bad to keep having a Guinness every now and then( among other things!).

cyclinglady · February 25, 2014

Eers03 if you ever find the ref for this it would be great. I am looking for numbers/ studies for asymptomatic diagnosed Celiac who go untreated. My DH just went through his biopsy and under the guide of some family members ( who have IBS and all sort of crazy GI issues btw but 'don't think they have anything') is backtracking on the gluten-free diet. Our son just got officially diagnosed( biopsy confirmed). Since DH blood levels are lower than DS( who was very symptomatic in retrospect), he thinks it can't be that bad to keep having a Guinness every now and then( among other things!).

I do not have any research sources readily at hand, but I just had anemia prior to my dx and since I already had a genetic anemia, the second one, iron- deficiency was over looked. No tummy issues. Husband has been gluten-free for 13 years, so I was shocked that I had celiac disease too. What are the odds? Anyway, two spontaneous fractures this year (summer and winter) from osteoporosis resulting from celiac disease. Those fractures were worse than my celiac disease diagnosis as they impacted my activities.

So, your husband may not feel any symptoms, but he could be causing some serious internal damage by ingesting gluten.

cahill · February 25, 2014

Eers03 if you ever find the ref for this it would be great. I am looking for numbers/ studies for asymptomatic diagnosed Celiac who go untreated. My DH just went through his biopsy and under the guide of some family members ( who have IBS and all sort of crazy GI issues btw but 'don't think they have anything') is backtracking on the gluten-free diet. Our son just got officially diagnosed( biopsy confirmed). Since DH blood levels are lower than DS( who was very symptomatic in retrospect), he thinks it can't be that bad to keep having a Guinness every now and then( among other things!).

Even if he is asymptomatic damage is being done. As a celiac that dose not eat gluten free he is facing many consequences ,, if the risk of malnutrition , osteoporosis, other autoimmune diseases or the higher risk of colon cancer does not faze him ,,,maybe the fact that gluten is eating at his brain and will eventually deprive him of many things he has grown accustom to ,,, such as walking and talking :ph34r: will get his attention. Have him research Gluten Ataxia

ArPlasma · February 27, 2014

Even if he is asymptomatic damage is being done. As a celiac that dose not eat gluten free he is facing many consequences ,, if the risk of malnutrition , osteoporosis, other autoimmune diseases or the higher risk of colon cancer does not faze him ,,,maybe the fact that gluten is eating at his brain and will eventually deprive him of many things he has grown accustom to ,,, such as walking and talking will get his attention. Have him research Gluten Ataxia

I have told him all of this.

Anyway, his biopsy came back negative today( don't get me started on that either) but he takes it as he is off the hook. I found a couple of papers that I passed on to him. It is his choice.

Our house is gluten free though( i cleaned everything after our son's diagnosis). He did mention today that he is starting noticing that outside( read gluten- filled) food make him feel sick. Duh...

He is smart but stubborn. When he decides to be gluten-free, I know he will strict about it. In the meantime, 'denial' is the key word here. I know he will repeat his blood tests in a year, hopefully nothing significantly bad will occur in between.

NoGlutenCooties · February 27, 2014

I have told him all of this.

Anyway, his biopsy came back negative today( don't get me started on that either) but he takes it as he is off the hook. I found a couple of papers that I passed on to him. It is his choice.

Our house is gluten free though( i cleaned everything after our son's diagnosis). He did mention today that he is starting noticing that outside( read gluten- filled) food make him feel sick. Duh...

He is smart but stubborn. When he decides to be gluten-free, I know he will strict about it. In the meantime, 'denial' is the key word here. I know he will repeat his blood tests in a year, hopefully nothing significantly bad will occur in between.

This may sound harsh... but it sounds like the best you could hope for is that he developes really bad symptoms very soon. Maybe if he had bad symptoms and felt really crappy he'd admit to himself that he needs to be gluten-free. Going for years asymptomatic would be worse, IMO.

ArPlasma · February 27, 2014

This may sound harsh... but it sounds like the best you could hope for is that he developes really bad symptoms very soon. Maybe if he had bad symptoms and felt really crappy he'd admit to himself that he needs to be gluten-free. Going for years asymptomatic would be worse, IMO.

I had some similar thoughts. I don't want him to get sick but something is obviously not right already and he is not getting( enough?) outside signs of it. I think he might come along. We went to a work seminar last week, he had some gluten filled food and spent 2 days with severe stomach cramps and in the bathroom. I had to have him excuse from talks. he did mention yesterday, in spite of receiving the negative biopsy results, that he is starting to notice a difference when he eats gluten. I think it is also because we cut it out fully at home. So hopefully he will be more conservative soon.

notme · February 27, 2014

i was in terrible denial at first. it took me quite a while to admit to myself that i needed to stop eating gluten. it was like a little woodpecker in my brain every time i ate gluten and noticed feeling terrible, that bird was pecking at my denial until i couldn't deny it any longer. but it had to be my own decision (and it was hard to admit!) i think if my hubs had hounded me i would maybe still be not on the gluten-free diet.. (he says i am a 'rebel' <am not! lolz) sooner or later he will come around. especially since this thing gets worse and worse left untreated he will have no choice.........

GF Lover · February 27, 2014

Un-diagnosed Celiac Disease can cause a long painful degenerative effect on the body with organs shutting down and body functions shutting down. Wasting Disease, Serious Nutritional deficiencies and can also lead to more auto immune diseases and even cancer. it"s really not a hard choice to go gluten-free.

Good Luck

Colleen