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Refractory Celiac Disease Responds to Stem Cell Transplant

Celiac.com 04/10/2007 - Patients suffering from refractory celiac disease with aberrant T cells seem to benefit from high-dose chemotherapy followed by autologous hematopoietic stem cell transplantation. Refractory celiac disease with aberrant T cells has generally proven resistant to known celiac therapies, and patients are at high risk for developing enteropathy associated T-cell lymphoma. The small pilot trial was conducted by Dr. Abdulbaqi Al-toma and colleagues from VU University Medical Center, Amsterdam.

The study followed seven patients whose mean average age was 52.5 years old at the time of the procedure, and followed them for an average of 15.5 months (the lowest follow-up time was 7 months, the longest was 30 months). According to the study, there was no transplantation-related mortality, and only mild cases of transplantation-related toxicity. A one-month post-procedure follow-up showed remarkable clinical improvement all patients, including disappearance of abdominal pain, normalization of stool frequency, and improvement of biochemical markers.

The research team also noted that post-transplant histology of the small intestine revealed marked regeneration coupled with a disappearance of erosions and ulcerations. Furthermore, at 3 to 4 months, post-transplantation tests showed a decline in aberrant T cells from a mean of 63% at baseline to 38%. Additionally, at 2 years, tests for the first hematopoietic stem cell transplant patient showed continuing declines in aberrant T cells (to 3%).

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It should be noted that one subject of the study showed no declines in aberrant T cell percentages, histology examination or CD8+ cells, and that the patient died 8 months after the stem-cell transplant.

The research team concluded that the promising short-term results enjoyed by this small test group warrants a longer-term follow-up to properly assess the significance of the findings.

Blood 2007;109:2243-2249.

health writer who lives in San Francisco and is a frequent author of articles for Celiac.com.

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Hi Jennifer, This thread might have some information that would help you. Your doctors are pretty lame IMHO. Perhaps you can find a celiac group in your area that has local meetings for support. They might also suggest a different doctor who knows how to treat celiac patients.

All the above posts are full of good advice. What I'd like to add is, if you have coeliac disease and continue to eat gluten, you run the risk of other autoimmune diseases in the future as well as osteoporosis, malnutrition and even cancer, so even if you had no symptoms at the beginning, and may also not have any symptoms if you eat gluten (not all coeliacs do), the damage is still being done to your gut and the rest of your body, so please be aware of this.

You could possibly try calling the places in Texas and Chicago to see if they can refer you somewhere that does accept your insurance. Oh good luck to you!

Hi Jennifer and welcome CyclingLady has given you some good advice above. You want certainty and that's entirely understandable. Go back to your doctors and explain that you need to know a little more and hopefully they will engage positively with you. If they don't, then do pursue a second opinion. I just wanted to address your last paragraph quoted above. The problem with celiac, or in my case non celiac gluten sensitivity, is that it presents or doesn't present in so many different ways. It can do hidden damage which may take many years to become apparent. It can impact in ways which are incredibly difficult to recognise or isolate. I am 'lucky' in that the way that gluten impacts on me is far worse than any mental or social isolation brought upon by the diet, so motivation is easy for me, even without the certainty of a celiac diagnosis, there really is no alternative, I don't think I'd last long on a gluten diet now. But I can well understand how difficult it may be to stay honest on the diet if you don't have any symptoms to deal with. The diet can be isolating, there does become a distance between you and 'normal' people. Who would want to deal with all that if they didn't have to? If you aren't satisfied with your doctors responses and choose to go back onto gluten I suggest you find another doctor and go back into the diagnostic process and properly exclude celiac, including a scope. Otherwise you could be taking a big risk with yr long term health. You may find that this process supplies you with an answer as if your diagnosis was correct your response to the reintroduction of gluten may surprise you, or not of course! best of luck!

There is currently not any enzymes you take that will get rid of gluten, they are working on a promising one to reduce symptoms but all others out there right now are a bust and will not help you much if it all with gluten exposure, Celiac is a auto immune disease, your reacting to the proteins of gluten and it is attacking them and your own body. I do suggest a digestive enzyme if you have food issues in general to help break them down. But this will not fix gluten exposure, reduce damage from gluten, or make gluten eating safe by any means. These current ones on the market are FAD ones target at healthy people and helping them with general digesting of gluten proteins but will not help you if you have celiacs to eliminate gluten reaction symptoms.