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
      104,116
    • Total Posts
      919,453
  • Topics

  • Posts

    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,157
    • Most Online
      1,763

    Newest Member
    Anns
    Joined