Celiac Disease Maybe No More?

[Stefan]

Hello everyone!

First of all I'd like to say im from the Netherlands so excuse me for my poor english.

Like the topic title says I might have been cured from celiac disease. Everyone with a gluten intolerance knows there's no cure and that u have to follow the diet for your whole life. I, however had to cope with leukemia a few years ago. At the end of the treatment against the leukemia I had a stem cell transplantation. My big sister was the donor and she doesn't have Celiac disease.

Due to having completely new stem cells, there's a possibility that I don't have gluten intolerance anymore.

I've already been tested on antibodies and i had none. This could mean I'm following my diet perfectly but it I doubt is since I ate a reasonable amount of gluten 2 days before they took my blood sample (naughty me). Because there weren't any antibodies found, the docter told me to eat gluten for a whole week! This was 3 days ago so I have alrdy been eating gluten for 3 days and so far so good.

I'm meeting the docter again next week thursday for my usual checkup which is once every 3 weeks. I'll probably hear more then about how to continue to varify if i do or don't have deliac disease.

I was wondering how you guys feel about this with in particular if it's the right decision to let me eat gluten for a week.

Greets from the netherlands

Stefan

[ravenwoodglass]

It used to be thought that children would outgrow celiac. It was thought that after years of a gluten free diet that the celiac was gone when they reintroduced gluten and they would seem to be symptom free. Research has shown that however is not the case. They have called the period symptom free to be the 'honeymoon' period. If you do a search using the words 'honeymoon and celiac' some of that research may show up. It can take a long time for the antibodies to build back up to the level where the person is being damaged enough for the disease to become evident again.

I do not know if this is what is happening with you.

I do however know that your gluten challenge, eating a regular gluten filled diet, needs to be done for about 3 months for any chance of antibodies showing up in the blood tests again. It also can take some time for symptoms to reappear and at times the symptoms that appear first may not be gut related symptoms. Celiac disease can effect the mood, the liver, the skin and pretty much any other organ so do watch for symptoms other than just an upset stomach.

A week or two is definately not enough time on a challenge to say definately that you are 'cured' of celiac.

I am sorry that you had to go through having leukemia and I am really glad that your sister was a good match for the stem cell treatment. I do hope you continue to have good health.

[Stefan]

Thanks for your respond.

Could u also tell me what exactly damages the ntestine? is it the gluten or the anitibiodies that does the damage?

[ravenwoodglass]

Thanks for your respond.

Could u also tell me what exactly damages the ntestine? is it the gluten or the anitibiodies that does the damage?

It is the antibodies and they can work against any system not just the gut. Some, like myself, have brain or skin impact long before any gut symptoms appear, for example.

[RiceGuy]

Thanks for your respond.

Could u also tell me what exactly damages the ntestine? is it the gluten or the anitibiodies that does the damage?

It is the antibodies which do the actual damage, hence the term autoimmune.

I've been wondering about adult stem cells being used to repair the intestines, as there have been a lot of successes with other organs. I just heard about a bunch of people who received the treatment for blindness, and a very high percentage actually regained their sight. Heart patients have been able to grow new valves this way too.

Adult stem cells are collected from the patient, multiplied in the lab, and then injected back into the patient. So they are your own cells. This means no chance of rejection, as well as no ethical or moral dilemma.

I hope you've really been cured, though only time will tell. Thing is, even if you no longer have the antibodies being generated, your genetics are the same. And that suggests to me that a new trigger could bring Celiac back again.

[Gemini]

Hello everyone!

First of all I'd like to say im from the Netherlands so excuse me for my poor english.

Like the topic title says I might have been cured from celiac disease. Everyone with a gluten intolerance knows there's no cure and that u have to follow the diet for your whole life. I, however had to cope with leukemia a few years ago. At the end of the treatment against the leukemia I had a stem cell transplantation. My big sister was the donor and she doesn't have Celiac disease.

Due to having completely new stem cells, there's a possibility that I don't have gluten intolerance anymore.

I've already been tested on antibodies and i had none. This could mean I'm following my diet perfectly but it I doubt is since I ate a reasonable amount of gluten 2 days before they took my blood sample (naughty me). Because there weren't any antibodies found, the docter told me to eat gluten for a whole week! This was 3 days ago so I have alrdy been eating gluten for 3 days and so far so good.

I'm meeting the docter again next week thursday for my usual checkup which is once every 3 weeks. I'll probably hear more then about how to continue to varify if i do or don't have deliac disease.

I was wondering how you guys feel about this with in particular if it's the right decision to let me eat gluten for a week.

Greets from the netherlands

Stefan

First off, let me wish you continued good health and no return of that nasty leukemia! I am very glad to hear your treatment was successful. However, a couple of things struck me and made me have to ask you these questions......usually, in the US, when being treated for any serious cancer, a patient undergoes radiation and/or chemotherapy. Along with chemotherapy, a patient is usually put on steroids for awhile to guard against any reactions to the chemo. Any or all of these meds will suppress your immune system so you would not have symptoms from ingesting gluten. It could last for awhile also. That could be one possible reason why you seem to feel good after eating gluten.

The other possibility is that the stem cells helped in some way but I highly doubt your Celiac has been cured. Celiac Disease cures and therapies have been under study for quite some time now and if it were that simple, I think many of the major researchers would have figured this out by now. Stem cells can be used for many things but there hasn't been any press or word out to Celiac organizations about a possible stem cell cure. Your immune system may have been suppressed enough during treatment

so you are feeling pretty good right now. The problem with eating gluten is that you could become very sick again and possibly have a relapse of your leukemia if you keep damaging your insides eating gluten. That would make me worry enough to not eat it again. I hope this does not happen but I would be highly skeptical of what the doctors may say on this, if they recommend you eat gluten again. I think, for me personally, I would be extra careful about gluten ingestion in future to guard against a relapse.

[i-geek]

I'm seeing two possibilities here.

One- your own immune system was totally wiped out by treatment and replaced by one derived from your sister's hematopoietic stem cells. So in essence, you have a new immune system, one which isn't (currently) set up to react against gluten. So right now, you probably are non-celiac.

-But-

Two- If your sister was a good match, that means she has all the same HLA alleles that you do (otherwise her cells would see your own tissues as "foreign" and attack them). That plus the fact that somehow self-reactive cells were able to escape your bone marrow once and be triggered to produce autoimmune antibodies makes me think that you are probably at high risk for redeveloping celiac disease.

So if you aren't producing celiac antibodies, then the replacement of your immune system with a new one from your sister's cells appears to have treated you. I'm thinking that it would be a good idea for you to continue being tested if you're planning to return to a standard diet. Ditto for your sister since there's nothing to preclude her from developing celiac disease in the future.

[Jestgar]

I'm seeing two possibilities here.

One- your own immune system was totally wiped out by treatment and replaced by one derived from your sister's hematopoietic stem cells. So in essence, you have a new immune system, one which isn't (currently) set up to react against gluten. So right now, you probably are non-celiac.

-But-

Two- If your sister was a good match, that means she has all the same HLA alleles that you do (otherwise her cells would see your own tissues as "foreign" and attack them). That plus the fact that somehow self-reactive cells were able to escape your bone marrow once and be triggered to produce autoimmune antibodies makes me think that you are probably at high risk for redeveloping celiac disease.

So if you aren't producing celiac antibodies, then the replacement of your immune system with a new one from your sister's cells appears to have treated you. I'm thinking that it would be a good idea for you to continue being tested if you're planning to return to a standard diet. Ditto for your sister since there's nothing to preclude her from developing celiac disease in the future.

this.

you don't know which way you will go.

[Mari]

When the ova is fertilized by the sperm it has only one strand of DNA, the sperm contributes another strand of DNA and the 2 strands come together and form a double stranded DNAs. There are several "Celiac genes" associated with Celiac Disease but the one which correlates more than 99% is the DQ gene on chromasome 6 so it is used to tell if a person inherited the predisposition to develop Celiac Disease. A person with celiac disease can inherit one DQ Celiac Genes from one parent and a 'normal' gene from the other or they can inherit a DQ Celiac gene from both parent and rarely the test will show no Celiac genes but the person will have the symptoms of Celiac Disease. These genes tell the cell how to make proteins which are incorporated into the cell walls of antigen presenting cells and if the shape of these antigen receptors is right then small fragments of gluten (gliadin) will stick there ('normal' antigen receptors will not have the small gluten fragments stick to them). The body's immune system will be alerted to make antibodies , mistaking them for the presence of something foreign and these antibodies attack the villi in the small intestine.

It depends on whether one or both your parents carried a celiac gene on how likely it is that your sister also inherited a celiac gene or whether she has 'normal' genes. The Drs who deterined that you and your sister were compatable may have the information about your sister's genetic makeup - and they most likely tested for the other celiac genes when they determined youe compatability. In addition to the DQ gene on chromosome 6 is the DR gene less often positive in celiacs, but believed to be involved in this multigenetic disorder. If you can obtain these tests results you will find out whether you still carry the predisposition to have celiac disease.

There are a number of conditions which trigger or set off the autoimmune reactions but scientists have not determined exactly what happens or why they do this so there is no way to tell, as far as I know, whether you are still 'triggered' or not. You might write Dr. Fine at Enterolab.com and ask his opinion.

[Stefan]

Thanks for all the responds, I appreciate it alot.

I'll clarify a bit more about the leukemia treatment I had, it might help a bit for u guys to help me.

I've had alot of chemotherapy to basicly destroy my own stem cells. Then I had a little bit of radiation therapy to make sure my own stem cells were completely gone. Then I had a stem cell transplantation from my sister. That was about 18 months ago. Now i'm at a point where the stem cells of my sister have settled in reasonably well. I'm still at risk for graft versus host and im still on meds. I'm not sure how well my immune system is functioning now but i do know that i basicly have the same immune system as my sister at the moment (just not at 100% yet) and she isn't generating antibodies (yet ).

Now I need some confirmation to see if I understood everything correctly.

Basicly there's a possibility that I'm cured of celiac disease. But if that's the case then there's still a good chance of the Celiac disease coming back because my genetic system is still the same? That would mean that I have to keep checking (with blood samples) if I have celiac disease or not?

Also the way they discovered celiac disease in the first place was by taking a piece of my intestine to examine. I'm a bit scared that if they do this again and then say:'u don't have celiac disease' that there's still a possibility that I will get celiac disease back later. Basicly my question here is: From examining the intestine, can u conclude that a person doesn't have celiac disease and won't have it for the rest of his life?

[Jestgar]

Thanks for all the responds, I appreciate it alot.

I'll clarify a bit more about the leukemia treatment I had, it might help a bit for u guys to help me.

I've had alot of chemotherapy to basicly destroy my own stem cells. Then I had a little bit of radiation therapy to make sure my own stem cells were completely gone. Then I had a stem cell transplantation from my sister. That was about 18 months ago. Now i'm at a point where the stem cells of my sister have settled in reasonably well. I'm still at risk for graft versus host and im still on meds. I'm not sure how well my immune system is functioning now but i do know that i basicly have the same immune system as my sister at the moment (just not at 100% yet) and she isn't generating antibodies (yet ).

Now I need some confirmation to see if I understood everything correctly.

Basicly there's a possibility that I'm cured of celiac disease. But if that's the case then there's still a good chance of the Celiac disease coming back because my genetic system is still the same? That would mean that I have to keep checking (with blood samples) if I have celiac disease or not?

Also the way they discovered celiac disease in the first place was by taking a piece of my intestine to examine. I'm a bit scared that if they do this again and then say:'u don't have celiac disease' that there's still a possibility that I will get celiac disease back later. Basicly my question here is: From examining the intestine, can u conclude that a person doesn't have celiac disease and won't have it for the rest of his life?

Keeping in mind that we are not doctors...

I think it's possible that you are cured of celiac disease. It is also possible that if your are cured, that you could re-acquire it later. There is no way to tell if you will or won't.

I think it's also possible that the immune suppression drugs you are taking will suppress any immune response instigated by gluten (also would look like 'cure').

The only way to know would be to eat gluten and 1) see if it makes you sick, and 2) get another blood test/biopsy in a few months to see if your intestine looks damaged.

Ask all of your doctors if they think it's ok before you try it.

[Stefan]

At the moment I am eating gluten just like someone without celiac disease does.

the thing is that I don't know how reliable this gluten testing will be, what the consequences are and how long this is gonna take. I wrote a mail to Dr.fine like suggested and hope he can help me out a bit more.

Also i've got alot of questions to ask my doctor. She's not a specialist in celiac disease so I think it's good to ask her the kind of questions I asked here in this topic. If she doesn't know the answers to the questions she may get a specialist in which will give me more confidence. If she does know all the answers then I am sure she did her homework and knows what she is talking about.

[Monklady123]

Well... I can't say too much about stem-cell replacement but I can speak for chemotherapy. And chemo completely cured my seasonal allergies. Before chemo I had serious pollen/tree/grass allergies in the spring, serious enough to take prescription drugs. Then I had chemo for six months, which totally wiped out my immune system... took it down to zero white blood cells (yes, I basically had to stay isolated from everyone for awhile). I ended chemo in the middle of winter and then the next spring I suddenly noticed that I had NO allergies! And ten years later I still have none. Sometimes I get a tickle in my nose or throat on really high pollen days, but that's it. My oncologist said that he hears about this often, and the theory is that when your immune system is totally destroyed and then builds itself back up it's in a slightly different "form" (for lack of whatever more scientific word he used which I can't remember).

So that's my long-winded way of saying that I think that could be your case too. Celiac is an autoimmune disease, and chemo and the stem cells have totally changed your immune system. So now you don't have the symptoms you used to have.

That's my silver lining to cancer. That and having curly hair when it first came back in. Sadly that didn't last too long. But... still no springtime allergies.

[Stefan]

hehe i had the same! curly hair when it started growing back at first, not anymore now though!

I remember one of the doctors told me once that a person without Celiac disease had a stem cell transplantation froms someone with celiac disease. As a result the patient ended up with Celiac disease aswell!

Anyway i want to say thank you all for the responds. Thanks to you guys I already have some answers to my questions and I'm pretty sure more answers will follow when i ask my doctor more questions. Shall i keep posting here about the progress i'm making for you curious people?

Stefan

[Jestgar]

Please do keep posting. What you are doing is fascinating!

[ravenwoodglass]

hehe i had the same! curly hair when it started growing back at first, not anymore now though!

I remember one of the doctors told me once that a person without Celiac disease had a stem cell transplantation froms someone with celiac disease. As a result the patient ended up with Celiac disease aswell!

Anyway i want to say thank you all for the responds. Thanks to you guys I already have some answers to my questions and I'm pretty sure more answers will follow when i ask my doctor more questions. Shall i keep posting here about the progress i'm making for you curious people?

Stefan

Yes please do. I hope your good health continues.

[kareng]

This is fascinating. Please keep posting. You might want to write Dr Greene at Columbia Univ. If anyone has heard about this, it would be him.

[GFinDC]

Also the way they discovered celiac disease in the first place was by taking a piece of my intestine to examine. I'm a bit scared that if they do this again and then say:'u don't have celiac disease' that there's still a possibility that I will get celiac disease back later. Basicly my question here is: From examining the intestine, can u conclude that a person doesn't have celiac disease and won't have it for the rest of his life?

Hi,

The biopsy is used to determine active celiac disease. It doesn't reveal anything about possible future celiac disease. So, no you can't use a clean biopsy to predict if celiac will return or not.

Why not stick with the gluten free diet for a while? It is a very healthy diet if you eat whole foods instead of the processed gluten-free foods.

I am not a doctor but I watch one on TV.... :-)

[Stefan]

I rather not stick to the diet if I don't have to. I really don't like the glutenfree bread for example, especially now that i ate normal bread again. The thing i hate most about a glutenfree diet is that other people around you have to treat u in a special way when it comes to food. Also they feel sorry for me and I seriously can't stand it when people act like that around me. so thanks but no thanks, I'm gonna enjoy eating gluten as long as possible

[Stefan]

It's been 5 days since I started eating gluten, It's a weird experience. The funny thing is that the things u haven't been eating in 12 years are still familar. For example last night I ate some pie. I had no idea what to expect but from the moment I started to eat it I remembered the taste. Still no complaints so far but that doesn't say an awfull lot. I don't really have news, I guess I will have to wait for a respond to my mail and for the appointment with my doctor.

I still need to try out beer. I'm planning to drink beer in a day or two. I know there are glutenfree beers but I never took the effort to find it. I'm also gonna try more types of crisps. That being said I wonder what u would eat if u were in my shoes?

Greetings from the Netherlands

Stefan

[i-geek]

I'd eat pizza.

I don't miss bread, I never particularly liked cake, I have a recipe for gluten-free choc chip cookies that are better than my original gluten recipe and I can find decent gluten-free pasta and beer. However, I have yet to find a truly satisfying substitute for pizza. There are decent gluten-free pizzas available and I can make my own, but I really want a pepperoni pizza from the pizzeria down the street or from the local Italian bakery. Those are irreplaceable.