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While in London and surrounded by helpful family members, we learned 
about a nationally known nutrition consulting business  just down the 
street from where we were staying.  Part of the lead nutritionist's 
credentials is that he has celiac disease and understands how to live 
well with it.  As our daughter is one of those complicated cases of 
celiac with multiple symptoms and food sensitivities that seem to 
persist and grow over time, we made an appointment to see him.  We 
thought that a celiac disease expert in a country that clearly 
understands and treats celiac disease well might be able to help us.

Here is what we learned at our consultation.  When a person has celiac 
disease, it is easy for a doctor to make that the cause of all that 
individual's problems and blame everything on gluten exposure, when 
something else entirely could be going on.  The nutritionist had a list 
of about 20 symptoms that he read off and my daughter had virtually all 
of them, from headaches, fatigue, painful joints, acid reflux, weak 
immune system, athlete's foot, chemical sensitivities, nausea --- even 
excessive earwax in one ear!!  He says that all these problems can be 
caused by having the wrong combination of bacteria in your intestines.  
As a result, food isn't digested properly and big chunks go right into 
the blood stream, causing IgG markers that can be measured in blood 
tests.  Our daughter has tested as allergic to milk and dairy using the 
IgG markers, so this made sense to us.  This is also consistent with 
the theory of "leaky gut."

His approach is to analyze the bacteria in the gut using the patient's 
stool.  Instead of looking for specific bacteria, he has the lab list 
all bacteria present.  Then he prescribes a course of herbs and a 
limited diet for a couple of weeks in order to kill off the bad 
bacteria.  He said that taking probiotics is not helpful until the bad 
bacteria had been eliminated.  He said we could either work with him or 
he might be able to find a US doctor (we decided to work with him and 
do telephone consultations).

At the moment, we are feeling encouraged.  Our daughter has taken 
doctor-recommended brands of probiotics for years as well as glutamine, 
enzymes, supplements -- you name it !!!!  Some seem to help a little at 
first, but the problems recur or grow over time.  She has been 
diagnosed half-heartedly with fibromyalgia, visceral pain disability 
syndrome, hypermobility syndrome.  I say half-heartedly because the 
doctors diagnosing her offer the diagnosis only because they have ruled 
out all other possibilities.  Then, instead of offering a treatment, 
the only recommended followup is counseling or pain management therapy. 
  While I am fine with finding ways to help our daughter cope with her 
incessant pain and ill health, that does not mean that I have given up 
looking for ways to make her better and it really irks me when a health 
professional gives up on making our daughter better.

Our child had multiple ear infections as a baby and 11 courses of 
antibiotics by the time she was 2 (and many more courses of antibiotics 
since then).  So there is no doubt in my mind that her bacteria in her 
guts have been altered from their natural state, so this course of 
action sounds like it would make a difference for her.

I will let you know how this story progresses and would be interested 
in any comments, thoughts you have about managing gut bacteria as a way 
to greatly change and enhance a person's health.

Thanks.

Jackie in AZ

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