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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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

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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.

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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?

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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.

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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!

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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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    • http://www.cureceliacdisease.org/faqs/ You can also find lots of information on celiac at the University of Chicago celiac site.  One test they suggest is the anti EMA antibodies.  I don't see that one listed in her results.  Probably because it is more expensive to do.  So they may have skipped it.  The other test they usually do is the total serum IGA levels, which is used to prove that the person's immune system actually makes IgA antibodies.  Some people don't make IgA antibodies, so the IgA tests are useless in them. It looks to me like she makes IgA though, if this is the serum IgA result. IgA 133 mg/dl Reference range 33-200 There are also gene tests they can do.  The genes indicate the possibility of developing celiac disease, not the automatic presence of celiac disease.  About 30% of people in the USA have one of the genes for celiac disease, but only about 1% develop celiac disease. Some of the celiac genes are associated with other autoimmune conditions besides celiac disease.  So there are lists of AI associated conditions with celiac disease.  Sometimes called related conditions. http://www.drschaer-institute.com/us/celiac-disease/associated-conditions-1051.html
    • Blood was drawn this afternoon... they said I could get results tomorrow or even the next day! I also have a GI appt scheduled for June 9th. I am so glad I will have at least some kind of answer pretty soon. I'll let you all know. Thanks again for being so helpful!
    • Thank you so much for those links, I will check into it. Her pediatrician told me this afternoon she is wanting to repeat the bloodwork since that one test was elevated. I'm relieved that her pediatrician didn't dismiss it like the other dr in the practice did.
    • http://www.houstonceliacs.org/ https://www.csaceliacs.org/csa_chapter_25.jsp You can check with these groups to see if they recommend any doctors in Houston.
    • I have been having issues with gluten for quite some time now and decided to go gluten free back in October, I finally got the celiac blood test a couple weeks ago and it came back inconclusive. My doctor referred me to a gastroenterologist who I saw today, she told me I'd have to eat gluten rich foods for 1 month and then have another blood test done....of it comes back negative she said I'd need to eat gluten another few weeks (up to another month) and then do a scope and biopsy....this would be hell on me as I have severe cramping and nausea when I am exposed to gluten.  I haven't actually eaten anything that is straight gluten like bread so I'm not sure what would happen. She gave me the option to hold off and continue my diet or go through 2 months of pure gluten exposure (and pain) my question is has anyone been faced with this? Should I just continue with my gluten free diet and assume I have it or is the diagnosis really that important? Doc says based on my symptoms and reactions I more than likely have it. 
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