Does One Ever "get Over" The Disease?

[bob79]

When my son was five, he was diagnosed with celiac disease. He had a protruding stomach, bad enough so that his lower ribs were being pushed outward. He vomited frequently, sometimes with great force and his stools were huge, light colored and very foul smelling. He was put on a diet that excluded gluten.

The doctor told us to keep him on it for one year. After the year was up, we gradually reintroduced him to foods that contained gluten. He had no recurrance of the symptoms.

I have just learned that one is supposed to stay off gluten for life. Now here is the kicker, I am talking about when he was five years old, that was in 1960, he hasn't had any problems since and he will be 54 in July! I've tried to find whether this disease ever really goes away and if not, why is he healthy when he probably has gluten in his diet everyday? Can anyone educate me on this?

Bob79

[MaryJones2]

Bob,

Welcome aboard!

I don't know that I have a good answer for why your son is healthy now but I can tell you that we have several members diagnosed in the 40s, 50s and 60s here who can share stories. Until the 60s-70s, it was generally accepted that children grew out of celiac disease so I'm not surprised that your son was put back on a gluten diet. This is a really interesting topic and I hope others can share and give more insight.

[Tallforagirl]

Now here is the kicker, I am talking about when he was five years old, that was in 1960, he hasn't had any problems since and he will be 54 in July! I've tried to find whether this disease ever really goes away and if not, why is he healthy when he probably has gluten in his diet everyday? Can anyone educate me on this?

Bob79

A large proportion of diagnosed Celiacs are asymptomatic, it doesn't mean that damage isn't still occurring.

I guess a lot of the problems associated with celiac disease can be "silent" and you only know something's wrong when, say, you fall and break a bone due to Osteoperosis, or you develop more obvious symploms of another autoimmune disease like diabetes.

I think the body is very adaptive, and can compensate to a certain degree for the damage being done by the autoimmune response. For example, a lot of Celiacs develop an increased appetite because of malabsorption.

And for a lot of people, they only find out what "healthy" is when they get diagnosed, and start to feel so much better on a gluten-free diet.

Did your son get diagnosed through blood test and/or biopsy at the time, or was his diagnosis given based on symptoms alone?

[bob79]

A large proportion of diagnosed Celiacs are asymptomatic, it doesn't mean that damage isn't still occurring.

I guess a lot of the problems associated with celiac disease can be "silent" and you only know something's wrong when, say, you fall and break a bone due to Osteoperosis, or you develop more obvious symploms of another autoimmune disease like diabetes.

I think the body is very adaptive, and can compensate to a certain degree for the damage being done by the autoimmune response. For example, a lot of Celiacs develop an increased appetite because of malabsorption.

And for a lot of people, they only find out what "healthy" is when they get diagnosed, and start to feel so much better on a gluten-free diet.

Did your son get diagnosed through blood test and/or biopsy at the time, or was his diagnosis given based on symptoms alone?

[bob79]

Thanks for both replies. As I remember, he was diagnosed wholly on the symptoms. That's one reason why I posted the topic as it made me wonder if he ever really had the disease. But his symptoms were soooo textbook. He would vomit halfway across the room and his stools had a very large diameter (the poor kid) and were really putrid. I was quite worried when it all came down as to whether he'd end up with his lower ribs deformed. When we cut out the gluten, his symptoms immediately ended. He grew up to be a 6" 2", 200 pounder, with a flat tummy and healthy as a horse.

[Gfresh404]

It's interesting that after a year he was able to tolerate gluten. I have heard that if the bacteria in the gut get thrown out of wack gluten intolerance can result. However I find this hard to believe. In my opinion "gluten sensitivity" is merely just the very beginning stages of Celiac Disease. As it was said before, many people with Celiac barely have any symptoms at all. I would get him tested for Celiac just to be certain, ask for a full Celiac blood panel.

[weluvgators]

But his symptoms were soooo textbook. He would vomit halfway across the room and his stools had a very large diameter (the poor kid) and were really putrid.

Can anyone elaborate on large diameter stools?

[Lisa]

There is a possibility that your son was misdiagnosed. Could you elaborate on how he was diagnosed. As unreliable as testing is in to 2000's, it hard to imagine the reliability in the 50's.

[nikki-uk]

Bob, I'd be curious what a blood test/biopsy would show on your son now

[bob79]

Bob, I'd be curious what a blood test/biopsy would show on your son now

[bob79]

To Nikki and others.

I'm curious too as to whether he actually had celiac even though the symptoms and cessation of them seemed to point to a positive diagnosis. I'll suggest to him that he undergo the tests. But it isn't like me bundling him up in his jammies and trundling him off the the doctor's office. He's in his 50's now and probably hasn't given the disease a thought in the past 45 years. I remember when he first went on the diet. He was in kintergarten and shortly after he started on it, they had a Valentines party in his class. Along with bread etc, he was also not to eat sweets for the next year. On that day, he came home with six or eight sticky little candy hearts cupped in his hand and asked his mommy to keep them for him until his diet was over. Kind of tuggs at the heart.

[elye]

Hi, Bob!

Well, my husband, much like your son, was diagnosed with celiac when he was about 2....swollen belly, crying fits after eating wheat. My mother-in-law was told to keep him off gluten for a year or so, then try him gradually back on the stuff.

He was on gluten for the next 45 years or so, a very healthy athlete, no health issues whatsoever.

Then I got my diagnosis of celiac disease, and I began to learn all about it. Needless to say, I insisted that he get the celiac blood panel run. It was "negative".

The biopsy that was done - -"negative".

Then he had stool testing done through Enterolab, and the antibodies were flourishing there. A very high positive.

To make a long story even longer, he never realized until now that he actually WAS often tired. He wasn't able to run as far and as fast as he can now. He does NOT have to live with embarrassing gas that he always thought was just normal for a guy. It also wasn't a "guy" thing to have to undo his jeans after most meals.

This was not normal. Who'd a' thunk?

But the biggest thing: He will now avoid all the horrid long-term complications -- cancer being foremost.

It's all good!

[chatycady]

To Nikki and others.

I'm curious too as to whether he actually had celiac even though the symptoms and cessation of them seemed to point to a positive diagnosis. I'll suggest to him that he undergo the tests. But it isn't like me bundling him up in his jammies and trundling him off the the doctor's office. He's in his 50's now and probably hasn't given the disease a thought in the past 45 years. I remember when he first went on the diet. He was in kintergarten and shortly after he started on it, they had a Valentines party in his class. Along with bread etc, he was also not to eat sweets for the next year. On that day, he came home with six or eight sticky little candy hearts cupped in his hand and asked his mommy to keep them for him until his diet was over. Kind of tuggs at the heart.

Sounds like he was on the Specific Carbohydrate Diet. The original gluten free diet for celiac disease. It was claimed to cure celiac disease. They didn't have blood tests or DNA tests back then. More people were diagnosed with celiac than there are now. He should get tested to be sure he doesn't have celiac, as its' known to cause cancer.

I'm on the SCdiet. The diet definently works, as I'm finally getting better, but I won't ever add gluten back.

[bob79]

Hi, Bob!

Well, my husband, much like your son, was diagnosed with celiac when he was about 2....swollen belly, crying fits after eating wheat. My mother-in-law was told to keep him off gluten for a year or so, then try him gradually back on the stuff.

He was on gluten for the next 45 years or so, a very healthy athlete, no health issues whatsoever.

Then I got my diagnosis of celiac disease, and I began to learn all about it. Needless to say, I insisted that he get the celiac blood panel run. It was "negative".

The biopsy that was done - -"negative".

Then he had stool testing done through Enterolab, and the antibodies were flourishing there. A very high positive.

To make a long story even longer, he never realized until now that he actually WAS often tired. He wasn't able to run as far and as fast as he can now. He does NOT have to live with embarrassing gas that he always thought was just normal for a guy. It also wasn't a "guy" thing to have to undo his jeans after most meals.

This was not normal. Who'd a' thunk?

But the biggest thing: He will now avoid all the horrid long-term complications -- cancer being foremost.

It's all good!

[nikki-uk]

To Nikki and others.

I'm curious too as to whether he actually had celiac even though the symptoms and cessation of them seemed to point to a positive diagnosis. I'll suggest to him that he undergo the tests. But it isn't like me bundling him up in his jammies and trundling him off the the doctor's office. He's in his 50's now and probably hasn't given the disease a thought in the past 45 years. I remember when he first went on the diet. He was in kintergarten and shortly after he started on it, they had a Valentines party in his class. Along with bread etc, he was also not to eat sweets for the next year. On that day, he came home with six or eight sticky little candy hearts cupped in his hand and asked his mommy to keep them for him until his diet was over. Kind of tuggs at the heart.

OH Bob!!!

This does indeed tug at the heart strings as my son has celiac disease and sometimes it IS hard

I did laugh at the idea of you 'bundling your son up in his jammies' now he is in his fifties

I think there is alot we don't yet know about this disease and it would be interesting to know how your son would fair though

Well, my husband, much like your son, was diagnosed with celiac when he was about 2....swollen belly, crying fits after eating wheat. My mother-in-law was told to keep him off gluten for a year or so, then try him gradually back on the stuff.

EM!!.... I never knew this!!!

Clearly gluten bothers him - but without the current acceptable markers for celiac disease (Ttg/villous atrophy)

...and of course your happy with the 'less gas' too!!

[CeliacMom2008]

I've always been hesitant to post this because there's absolutely NOTHING scientific about it, but since you asked...

I spent over a decade battling diarrhea (4-5 times per week), smelly gas (can't believe I just typed that!), extremely infrequent periods, then had trouble getting pregnant - in fact was told I could not get pregnant without medical intervention (went on fertility drugs, went off fertility drugs, and then ended up pregnant). My mother always said I was a "sleeper" - was forced to give up naps to go to kindergarten, took naps on weekends, never stayed up late (even in college the thought of going out to bars at 9/10:00 at night sounded horrible to me). My pediatrician took me off milk products for a year thinking I might have dairy problems. I was skin and bones. Sounds to me like undiagnosed Celiac!

Then it stopped. All of it. I became "normal" - at least in relation to the above.

Then a decade later my son was diagnosed with Celiac. When I went to get tested I was almost positive my test would show I had Celiac and just no more symptoms. But everything came back negative.

So part of me wonders if for some people it turns off as mysteriously as it turns on. I went through a great deal of emotional trauma about the time things turned around - could that be the trigger for on and off?? I have no idea, but I have often wondered. And if it does somehow "turn off" without knowing why/how does it matter?

Again, I have always been so hesitant to post this because I wouldn't want to build anyone's false hope on one person's probably coincidental experience. I still think anyone with Celiac should follow as close to a 100% gluten free lifestyle as possible for their entire life. The consequences are too severe to not do that. But I do think there is much left to learn about the disease and I will probably always wonder about my own history.

[phakephur]

Here is an article about a woman who apparently went into remission after 10 years on gluten-free diet. I haven't seen any followup to this.

Given that it used to be thought that children outgrew celiac disease, I'd like to know what research was done to show that it is a lifelong disease and when was it done. 1970s? 80s?

Sarah

[CeliacMom2008]

Sarah,

Thank you for the article! That's very interesting!

[bob79]

OH Bob!!!

This does indeed tug at the heart strings as my son has celiac disease and sometimes it IS hard

I did laugh at the idea of you 'bundling your son up in his jammies' now he is in his fifties

I think there is alot we don't yet know about this disease and it would be interesting to know how your son would fair though

EM!!.... I never knew this!!!

Clearly gluten bothers him - but without the current acceptable markers for celiac disease (Ttg/villous atrophy)

...and of course your happy with the 'less gas' too!!

[bob79]

Thanks everyone for the very helpfull responses. I talked to my son and he says he will talk to his doctor about having some tests done. Opening this topic certainly brought about some interesting replies. It looks as if there is a lot to be learned about this disease. There are so many who responded with similar experiences. Bob79

[once and again]

I was diagnosed in the late 40's - by symptoms. Had the bloated belly and putrid stools...... My parents were told I would outgrow it. No avoidance of gluten - at least from what my mom remembers, instead it was fat to avoid.

It seemed that I had outgrown it. No definitive symptoms, though as I grew older I found that I really did not care for beer, pizza, pasta or bread. In 2001-2002 had very stressful life. My dad had Alzheimer's and trying to help my mother take car of him, working full time and being a single parent.

After dad died started having stomach problems. Mostly gas and constipation. Had a blood test that came back 10x higher than normal and then endoscopy that showed me I was in stage 4. I have read that stressful situations can trigger celiac.

Your son may not have symptoms though sometimes what we think of as normal is not. Most people don't go around talking about their bowel habits. And sometimes, stress can act as a trigger. So maybe he should at least get a blood test.

BTW after being re-diagnosed, my 90 year old aunt complained of problems. She was tested and came back positive. Had stomach problems all her life as did my grandmother.