Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Bmt Cured celiac disease But Now Symptoms Seem To Be Back
0

6 posts in this topic

My daughter was diagnosed with celiac disease at 2 years of age and we went on a whole house gluten-free diet at that time.  When she was 12 she was diagnosed with AML leukemia.  She underwent all the treatment protocols, including a bone marrow transplant from her full brother, who was a perfect match.  He, however, was not celiac and after the transplant was fully engrafted she was retested for celiac disease (blood only) and showed none of the markers in the blood for celiac disease.  Woohoo!  Doctors were ecstatic, scientific papers were written.  Everyone went back to the wheat based diet.  That was 10 years ago and she is still cancer free.  However, a couple years ago she developed seizure disorder and is on very strong and multiple medications for her seizures.  She was also diagnosed with Autism Spectrum Disorder, Aspergers, etc.  We are of the thought that the celiac disease has returned, despite the transplant, and we have returned to the gluten-free diet.  We have not had her retested for celiac disease but because there are other symptoms; the nausea, diarrhea, bloating, skin problems, etc that had been creeping in even before she started the medications for her seizures, we feel pretty certain she has a gluten issue again.  I am asking if anyone has had a 'medically induced' remission from celiac disease and then a relapse, if it's possible, etc.?

 

I also remember, way back when she was first diagnosed, I read a pamphlet that was published by a Canadian celiac group or foundation that specifically said there was a link between celiac disease and leukemia.  I cleared out all my celiac disease reference materials when she was in remission and have never been able to confirm that again.  Has anyone else heard or read of that connection?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome.  this is interesting.

 

To be honest, I'm surprised you didn't have her blood re-tested. With her other issues, you probably go to the doctor often.

 

Here's a thought.  Celiac is genetic.  It is posible for anyone with the gene or genes to get Celiac at any time in thier life.  For example, my boys tested negative for Celiac.  3 years from now, they could develop it and test positive.  10, 20 or 40  years from now her brother may develop Celiac.So I would think she could get it again.

 

When she was tested after her transplant, was she eating gluten free?  If she was, she wouldn't have been making any antibodies.

1

Share this post


Link to post
Share on other sites

Sounds to me that treatment changed her from a typical celiac (one who has symptoms) to a silent one (where a person has no symptoms).

 

None of the markers, what does that mean? Did she have normal blood levels (IGA TTG, etc) or was it genetic?

0

Share this post


Link to post
Share on other sites

Wouldn't she have been on drugs to suppress her immune system for a transplant?  Or was the match perfect, so that wasn't part of the treatment plan after the transplant?

 

If she was on drugs to supress the immune system, then wouldn't the drugs have been responsible for her immune system not attacking the small intestine after ingesting gluten?

 

The medical community is now recognizing Non Celiac gluten intolerance.  These people are not testing positive for celiac with gut damage, but are having more nuerological symptoms from ingesting gluten.

0

Share this post


Link to post
Share on other sites

Celiac Disease does not go into remission and cannot be cured, I'm afraid.  You are the victims of medical negligence and lack of education on the disease.

 

As others have mentioned, your daughter would have had her immune system totally suppressed before a bone marrow transplant and that would have rendered all blood testing useless.  If, added to that, she had been gluten free, then she would have tested negative on blood work.  Add to that she could have been in the honeymoon phase of Celiac, which occurs druing the teen years and early twenties.  When puberty happens and those hormones kick in,

it can mute the symptoms of Celiac so you become asymptomatic and think it has "gone away". Symptoms often crop up again in your late twenties, when hormones start to ebb a bit.  This is what happened to me.  My symptoms returned, en force, in my late twenties and they were horrible.

 

Blood cancers are linked to Celiac because blood cancers are cancers of the immune system. Celiac is an immune disease.

 

I am so very sorry you were given this information and I urge you to keep her on a gluten-free diet for life.  She has had cancer once and you don't want that to ever happen again.  No need to test her...if she was diagnosed as a Celiac as a child, she will be one for life.  Best wishes to your daughter and I sincerely hope her health continues to be excellent......no cancer!

2

Share this post


Link to post
Share on other sites




My daughter was diagnosed with celiac disease at 2 years of age and we went on a whole house gluten-free diet at that time.  When she was 12 she was diagnosed with AML leukemia.  She underwent all the treatment protocols, including a bone marrow transplant from her full brother, who was a perfect match.  He, however, was not celiac and after the transplant was fully engrafted she was retested for celiac disease (blood only) and showed none of the markers in the blood for celiac disease.  Woohoo!  Doctors were ecstatic, scientific papers were written.  Everyone went back to the wheat based diet.  That was 10 years ago and she is still cancer free.  However, a couple years ago she developed seizure disorder and is on very strong and multiple medications for her seizures.  She was also diagnosed with Autism Spectrum Disorder, Aspergers, etc.  We are of the thought that the celiac disease has returned, despite the transplant, and we have returned to the gluten-free diet.  We have not had her retested for celiac disease but because there are other symptoms; the nausea, diarrhea, bloating, skin problems, etc that had been creeping in even before she started the medications for her seizures, we feel pretty certain she has a gluten issue again.  I am asking if anyone has had a 'medically induced' remission from celiac disease and then a relapse, if it's possible, etc.?

 

I also remember, way back when she was first diagnosed, I read a pamphlet that was published by a Canadian celiac group or foundation that specifically said there was a link between celiac disease and leukemia.  I cleared out all my celiac disease reference materials when she was in remission and have never been able to confirm that again.  Has anyone else heard or read of that connection?

a celiac is a celiac is a celiac.... It doesn't get up and go away... it can just go dormant.. it is in the family genetically.  So you have to adhere to the diet.  Medical science cannot fix it. 

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,113
    • Total Posts
      919,443
  • Topics

  • Posts

    • Hi Michael, That's quite a spike in blood pressure!  I haven't tested that myself and don't want to if it means I have to eat gluten.  Blood pressure testing to identify food reactions is something that has come up before.  It sounds like it might be possible but I don't know how much study has been done on it.  Probably not much since it is such a simple, straight forward idea. Welcome to the forum!
    • Hi Megan, Did the doctor test you for celiac disease?  You really shouldn't go gluten-free until all the testing for celiac disease is completed.  It is a little odd for a doctor to tell you to go gluten-free for no reason IMHO.  Did he/she explain the reason for it? Personally, I have learned over the years what I can eat safely and what I can't.  Occasionally I get hit but it is rare.  Simplifying your diet is a good first step.  Avoiding processed foods for a while and dairy also is good.  I suggest any change you make last for a month at least. Then try the food again. If you are eating 100 random ingredients/foods each day it is hard to figure these things out.  If you reduce it to a much smaller number of foods then things become simpler. Welcome to the forum!
    • hey! Wondering if I can get some good info/help from you guys! I just signed up for this website couple weeks ago. Whenever I would Google things this was always the first to pop up and I always found info on things I googled. I am pretty new to the gluten free thing. I had a hernia surgery back in Jan and after that I kept throwing up after eating, the DR. told me it was probably acid reflex caused from surgery but all the meds I tried nothing helped. I went back and was told to cut gluten out. I have been doing so since. When I first started I felt like I had it under control and didn't throw up for 3 weeks, now I find it happening more often. I do buy gluten-free things and read labels to the best I can. My frustration comes from not knowing what its from. How do you know if its from the day before or what you just ate? I hate not knowing. Especially when I haven't had gluten (or so I think) I have been keeping a journal but I just find it so hard. I get this feeling in my stomach and can feel it in my throat. Sometimes I puke once sometimes 5 times! Yesterday for lunch I made an omlet with chicken mushrooms and feta cheese. I threw up almost 20 min after. I have also tried the no dairy thing and it doesn't seem to make a difference so I don't think dairy is an issue as well.
    • I have been on a gluten-free diet for exactly one-year. During that time, I have had no stomach issues or problems when I inadvertently ingested gluten. The other day, I had GI discomfort (no vomiting or diarrhea) and my blood pressure spiked t0 200/98 (normally 119/75). As my GI discomfort subsided, my pressure crept back to normal. This took about 16-hours. I know that I ingested something with gluten, which I had thought was gluten-free.  It never bothered me before. Should I expect that the longer I'm gluten-free, the more susceptible I will be to having a pronounced reaction to inadvertent gluten exposure? Has anyone else had similar experiences with blood pressure spikes?
    • If this is helpful: My local public library had a copy of Breaking the Vicious Cycle by Elaine Gottschall.  There is a Facebook group, I believe it is easily found by searching SCD Diet, and it's a closed group.  If you go directly to the official website of Breaking the Vicious Cycle, there's lots of information for free available, including the basics about the intro diet and beyond.  I would go to the original source of this diet rather than go to other groups/books who have perhaps veered away from Elaine Gottschall's fundamentals. Best wishes to you!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,152
    • Most Online
      1,763

    Newest Member
    jw15
    Joined