Her Celiac Disease "went Away" ?

[tiffjake]

A new girl at work asked me why I ate my lunch without a bun, and I told her it was becuse of Celiac Disease. She said "Oh yeah, I know about that, I had that when I was little, but it went away...." and I just looked at her. She said that she was "some kind of miracle baby" and I asked if she had follow-up testing and she insisted that she did...but I think maybe she never actually had Celiac, you know? I don't know, but it just pisses me off, because I worry that the other people at work won't take me serously now about CC and stuff like that. Anyone else heard such nonsense?

[woolwhippet]

YES! One of the Dads at school had celiac disease as a child and says it went away when he bacame an adult. Maybe it was an allergy instaed as those can resolve sometimes. Either that or their intestines have healed up and in a few years from now they will be sick again.

[DingoGirl]

I don't know, but it just pisses me off, because I worry that the other people at work won't take me serously now about CC and stuff like that. Anyone else heard such nonsense?

There was someone here, over a year ago, who posted that God healed her of Celiac.....I can't find the thread but have wondered about it. I do believe that miraculous healings ARE possible......but.........

I would query this girl in GREAT depth.........is she quite young? maybe it's dormant and will come back?

[kbtoyssni]

I think it was pretty common 10-20 years ago for doctors to think it was a childhood illness that you grew out of. And for some, after your intestines heal, you can eat gluten again and not feel sick, but that doesn't mean you're not doing damage. But if you have celiac, you have it for life. You may get away with eating it again for some time, but eventually you will damage your intestines and get very sick again. I know there are several people on this board who "had it as a baby" only to get very sick again in adulthood and spend 10 years trying to figure out what was wrong only to find out it was from celiac.

[LisaJ]

I was told at age 19 that I either "outgrew" Celiac, or that I never had it. I was diagnosed at age 2, then was having some digestive problems at 19, and my doctor retested me (at that time, I was cheating on the diet regularly, but apparently not enough to get a positive biopsy) and said I absolutely did not have Celiac. It took about 5 years of being off the diet completely to start having symptoms again. Unfortunately, I did not know a lot about Celiac at that time, and I am not overly sensitive, so it took many years of doing damage for me to go get tested again.

That is unfortunate about your coworker. She is probably doing a lot of damage and has no idea (just like I did).

[Guest CD_Surviver]

I think it was pretty common 10-20 years ago for doctors to think it was a childhood illness that you grew out of.

When i was diagnosed 12 years ago my doctors said because of my age i could possibly grow out of it but i never have. And i think they said that because they didn't know as much as they know now about Celiac.

Lauren

[codetalker]

I was DX'd in the early 50's at Johns Hopkins as a celiac baby. By age 4, I was back on a regular diet because the doctors believed I had outgrown the condition. 50 years later, I can testify that I never really did outgrow it. All the doctors accomplished was to derail my future health.

[NewGFMom]

My neighbor's uncle was one of the original "banana babies" in the 1930's. He was one of the first diagnosed celiacs in the country. He was only allowed to eat bananas and arrowroot when he was a child.

They told him that he outgrew it and he has been eating gluten ever since. He's now in his late 80's an it's JUST starting to cause problems.

This tells me that there is still a LOT we don't know about this disease. I wouldn't take the risk if it were me. But it just goes to show that this "outgrowing" think isn't totally ludicrous. Unusual, but not completely impossible.

[darlindeb25]

I worked with a lady in Michigan who told me the same. Said she was celiac as an infant, but had grown out of it and maybe I would too. I am afraid one day she will find out she is very sick.

A man my sister help diagnose, was doing so well. She convinced him to get his doctor to test him for celiac disease and she was right. She helped him with his diet, she is celiac too, and a dietician. He put weight back on and was doing very well for probably 4 yrs. Then he decided he was cured and went back to gluten. My sister saw him and he told her he was cured and the celiac was gone, that he had gone back to regular foods and was very happy, nothing was bothering him anymore. She tried to explain to him that celiac doesnt just go away and he just laughed. Two weeks later, he died of a massive heart attack, he was only 62. Sad, very sad. Maybe he was going to have the heart attack anyways, maybe going back to gluten just overwhelmed his system--who knows. It kind of scares me.

[Fiddle-Faddle]

I was told at age 19 that I either "outgrew" Celiac, or that I never had it. I was diagnosed at age 2, then was having some digestive problems at 19, and my doctor retested me (at that time, I was cheating on the diet regularly, but apparently not enough to get a positive biopsy) and said I absolutely did not have Celiac. It took about 5 years of being off the diet completely to start having symptoms again. Unfortunately, I did not know a lot about Celiac at that time, and I am not overly sensitive, so it took many years of doing damage for me to go get tested again.

That is unfortunate about your coworker. She is probably doing a lot of damage and has no idea (just like I did).

This is why I keep saying that defining celiac disease only by villi damage is INSANE!

It's like saying that peanut allergies can only be diagnosed in people who go into anaphylactic shock after eating peanuts.

[JennyC]

This is why I keep saying that defining celiac disease only by villi damage is INSANE!

It's like saying that peanut allergies can only be diagnosed in people who go into anaphylactic shock after eating peanuts.

I could not agree more, especially since falsely positive serology is so rare.

[Rpm999]

i think what KB said is a big hint....seems like plenty of people have it, it's goes away, then comes back...why? because your body can't handle it....yet it can when it's strong enough too

i've heard lots of stories, there's people who have it, it goes away, eat gluten, then a few months later have a lot of issues....sometimes, like the person said here, the man didn't have issues until he was 82ish

that right there says a lot, and to me, it shows a TRUE cure wouldn't be all that hard, if your body is strong enough where it can not be bothered by it (like the 82 year old) or where the villi isn't extra sensitive to it (most people)

i don't know, just when you really think about it, it's not that crazy of a issue....crazier things have been fixed/cured, i have hope at least

[Rpm999]

oh and another thing since i randomly can't edit my post

i believe i had it when i was a baby, i was really sick and unexplained...for years and years i was basically find, and i ate and drank and treated my body terrible, and it all backed up and hit me, and now it reminds me just like i was when i was a baby

i think it all depends on how you treat your body and what it's built up to be, it's all about moderation and strength, there's a lot of secret to sickness

sure celiac is lifelong, but i think that just makes you extra sensitive and prone to where if it all stops, it can happen again down the road....so there's no cure in that sense, yes, but i don't see that as something hard to be changed, if the case....but hey, people are finding new things everyday, AT-1001 is in testing, you all may be in shock one day

[wolfie]

I also know someone who was diagnosed as a baby/young child whose current dr wants her to go back on gluten to be tested?!?! I am not sure about specifics as far as her diagnosis as a baby, but it seems as if there was the same thought...that you could grow out of Celiac.

[bigapplekathleen]

Hi everyone,

Well, I just went through this very same thing. Of course, my doctors were never 'quite' sure that I really had celiac, though I responded exceptionally well to the gluten-free diet and all of my other medical problems went away completely. I flunked a gluten challenge 2.5 years ago (after being on a gluten-free diet for 1.5 years) and passed out several times, had horrible stomach reactions, and got a bad infection that required antibiotics.

So, now I have changed doctors. I had a colonoscopy and endoscopy at the beginning of November. This is over 4 years on the gluten-free diet at this point (and on lots of amino acids and naturopathic things to build immune system). The doctor found NO evidence of celiac, IBs or anything else. (but did remove a couple of polpys that were tubular adenomas, but not cancerous yet). So, since we were never sure whether I was truly celiac or not, I went off the gluten-free diet the day before thanksgiving and enjoyed a normal holiday meal with my friends. I was very itchy every time I consumed gluten and felt exceptionally tired. In fact, a couple of times, I sat down and just fell asleep immediately with no warning. Within 5 days, I had a throat and lung infection that has now turned into acute tonsillitis and wheezing in the lungs (asthma has returned after over 10 years free of symptoms). This is amazing, since I haven't even had as much as a cold in the past 10 months. I am also having horrible bowel function. I used to go so easily, and would have sporadic diarrhea. Now I am so constipated that I am quite often in pain. My ear-nose-throat doc doesn't believe that gluten could have caused all these symptoms. We all know better, I think. I will be sticking to the gluten-free diet from now on, since I realize that gluten is a huge immune system suppressant for me. (when I was first diagnosed 4.5 years ago, I had no immunity to most common bacteria and had to get vaccines to build up my immunity to basic things, since I had been taking antibiotics 10-14 times a year for the previous 10 years.)

So, while I am glad I now have a 'clean' biopsy that says negative for celiac (which will make it easier to get life & health insurance if for some reason I am no longer covered by an employer), I will not be running out and replacing my gluten-free foods. The evidence is quite contrary for me.

I should mention that I was also negative for the celiac genes a couple of years ago, but one of the top celiac specialists (that was my doctor at that time) felt that I was one of those 5% of celiacs that doesn't have the gene.

Any thoughts from my gluten-free friends?

Kathleen

[kbtoyssni]

i think what KB said is a big hint....seems like plenty of people have it, it's goes away, then comes back...why? because your body can't handle it....yet it can when it's strong enough too

I have wondered how it is that people can start eating it again for years and not feel sick. There are so many here that get get so sick from the slightest bit of gluten that I can't imagine eating gluten all the time for years and not be sick. Maybe a child's immune system is stronger and once healed can handle gluten with minimal symptoms. Or maybe the symptoms just change from being digestive to being a silent, internal type damage that you don't realize until much later.

I'm still a little confused about how the disease is actually triggered, though. I had mild symptoms for ten years, but the disease really got triggered after a bout with the flu. So maybe I would go back to the very mild, tolerable symptoms if I started eating gluten again, only for it to be "retriggered" after another traumatic event. Not that I'm going to try - there's no way I'm going through all that again!

[bigapplekathleen]

I have to admit that I was shocked that I had no tummy symptoms from eating gluten again. I used to get so sick from even the slightest cross-contamination, but honestly, the doc said my biopsy and everything looked perfect inside, so perhaps staying so perfectly gluten-free healed everything. The Westchester Celiac group's newsletter that just arrived had several abstracts of medical articles about remission in celiac patients. I have never heard anyone talk about that before.

K

[Rpm999]

I have wondered how it is that people can start eating it again for years and not feel sick. There are so many here that get get so sick from the slightest bit of gluten that I can't imagine eating gluten all the time for years and not be sick. Maybe a child's immune system is stronger and once healed can handle gluten with minimal symptoms. Or maybe the symptoms just change from being digestive to being a silent, internal type damage that you don't realize until much later.

I'm still a little confused about how the disease is actually triggered, though. I had mild symptoms for ten years, but the disease really got triggered after a bout with the flu. So maybe I would go back to the very mild, tolerable symptoms if I started eating gluten again, only for it to be "retriggered" after another traumatic event. Not that I'm going to try - there's no way I'm going through all that again!

i think it all depends on your body...i remember i was extremely sick as a baby, almost DYING, and reacting to EVERYTHING....all my mom said was they put me on an immune medicine for like a year, and i know that for years and years and years and years and years i had no issues...it's funny cause things like fig newtons helped me

but i ate horrible all this time, had a bad acid reflux attack and bam....i do believe if you completely heal and your immune is strong, your fine, but you still need to take very good care of your body, which means not eating gluten every second like i did, and not exercising all these years....i did nothing good

the body is odd chemistry, some things can be unexplainable, but to me it just shows that when your immunes sensitive, it can explode that easy...that's genetic, because i know some people that are FAR from healthy and they really have perfect health...that's gift right there and they don't need to worry....but if your immune/body is sensitive, you should be taking great care of it in the first place, which i didn't...most people don't realize that till it does the damage though

[2Boys4Me]

I could not agree more, especially since falsely positive serology is so rare.

I once asked Ty's ped GI when/if we would run follow up blood tests to check how we are doing with following the diet, avoiding cc, etc. He said unless we suspected him of cheating, we probably wouldn't run another blood test for a while because false positives can occur if a rookie is interpreting the test. I'm not sure exactly which of the blood tests he was referring to, but he said that they use a fluorescence type thing and the residual glow of the fluorescence can be misinterpreted as a positive. I'll have to ask him for more details about that the next time we go.

I've always been curious about that statement since everyone here says false positives are rare and he kind of implied they're pretty common. Maybe tests are conducted differently here.

[tiffjake]

Thanks for all of your replies! I have had a chance to talk to her a little more, and she insists that she had follow up testing that showed she did not have Celiac Disease. BUT she now has a terrible ulcer, and she is on antibiotics for it. I asked her if it was H. pyliori, and she said they never confirmed it, but were putting her on the meds anyway. I just can't help but think these are connected. She has other medical problems too. I don't know her well enough to use "tough love" when talking about the diet, but I worry about my own credability at the same time, you know? Ug! What's a girl to do??!! Maybe if we work together a lot I will get to bring it up in conversation more and more....

[hathor]

I do wonder about her followup testing. Did it follow years of being gluten-free? If so, of course tests for celiac would be negative. The antibodies go away and the villi damage reverses.

I guess I would ask her how much gluten she was consuming and for how long before she had this followup testing. I would hate to think that she hadn't had enough gluten, was tested and was told she had healed -- & she misinterpreted this to mean she could have gluten again.

I suppose she could have been initially misdiagnosed too. Or the followup testing yielded a false negative. With her current health problems, if it has been awhile since the testing, she may need new tests.

I would tell her that her doctor should have written this up and published. The literature certainly doesn't disclose any cases of people outgrowing celiac. They outgrow allergies sometimes. That could be another explanation -- she or her initial doctor confused celiac with a wheat allergy.

[loraleena]

I heard it is common for celiac to become quiet or dormant during the teen years. Even though a person may not have symptoms they are still damaging their body. Eventually she will pay the price. Please inform your friend of this!

[sneezydiva]

I think it was pretty common 10-20 years ago for doctors to think it was a childhood illness that you grew out of. And for some, after your intestines heal, you can eat gluten again and not feel sick, but that doesn't mean you're not doing damage.

I think I also read somewhere that celaic sometimes goes into remission in the teen years, and they don't understand why. And that is why they mistakenly used to think people outgrew it. If you read alot of people's stories here, they often mention being sick as a kid. okay in the teen years, and then sick again as an adult. Although I'm not a diagnosed celiac, my history was similar, I was a sickly kid, but a healthy teen, and then in my 20's started getting sick again. I also had a major growth spurt at 15-16 years old. I went from 5'0'' in the beginning of 9th grade to 5'4" almost over night, and eventually 5'7" I believe my body was playing catch-up during the remission in my teens.