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Bmt Cured celiac disease But Now Symptoms Seem To Be Back

ColdCreekBobbieLee

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ColdCreekBobbieLee Newbie
ColdCreekBobbieLee
Posted

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?

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kareng Grand Master
kareng
Posted

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.

shadowicewolf Proficient
shadowicewolf
Posted

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?

mommida Enthusiast
mommida
Posted

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.

Gemini Experienced
Gemini
Posted

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!

Aeriol Newbie
Aeriol
Posted

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. 

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