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I am summarizing together the responses to two posts, one on dealing 
with multiple food allergies in London, England, and the other on 
meeting with a nutritionist in London.  The nutritionist did not seem 
surprised by our daughter's multiple symptoms that were unrelieved by a 
strictly gluten free diet, and even was able to predict what those 
symptoms were.  He said he sees a lot of people with celiac disease who 
have an ongoing variety of symptoms after eliminating gluten, and he 
attributes this to their having problematic bacteria in their small 
intestines.  His approach is to first do a comprehensive test to find 
out what is in the intestines, followed by a regime of herbs and a 
special diet to kill off the bad bacteria and reinforcing the good 
bacteria.

We have no idea if this approach will work for our daughter, but we are 
giving it a try.

I heard from a total of 32 people on the two posts, and I have had long 
correspondences with several of them. Most could strongly identify with 
having what I call complicated celiac (or celiac with complications) - 
where avoidance of gluten does not eliminate a variety of symptoms, 
including food allergies, sinusitis, athlete's foot, nausea, headaches 
of all sorts, joint pain, etc.  Several also indicated that, like our 
daughter, they had taken many courses of antibiotics, often at an early 
age.  A few were interested in who the nutritionist was - his name is 
Ian Marber, and you can contact him and his staff through 
www.thefooddoctor.com

Don't be put off by the website - it is oriented towards weight loss 
which appears to be his bread and butter.

Several people have asked if there are doctors in the U.S. who use the 
same approach.  I do not know of any but will ask when we next speak to 
Marber (he didn't know any off the top of his head).  A couple of 
people indicated they love their doctors - they didn't mention names, 
but one lives in Atlanta and one in Santa Rosa.  I can ask them for 
names if anyone wants them.  Also, in Rita's Smith's recent summary on 
antibiotics, she refers to an email she received from Dr. Leonard 
Weinstock, a gastroenterologist in St. Louis, MO.  He is familiar with 
bacterial problems associated with health conditions of people with 
celiac disease and uses Xifaxan to treat them and said they could be 
tested for with a Lactulose breath test.

The laboratory that we are working with to analyze the stool sample is 
Genova Laboratories, in North Carolina.  They have a website you can 
find easily by doing a search.  They refuse to tell you prices of  
diagnositc tests unless you are a licensed health care provider (which 
really irks me).  However, if you call them and ask, they will tell you 
doctors they work with in your area - perhaps that would be another way 
to find someone who might be able to work with you if you want to try 
this approach.

I think that folks with complicated celiacs (like our daughter) have a 
problem knowing how to get better, or even where to start.  In our 
case, we tried working with one gastroenterologist, whose only response 
was that he wanted to do another endoscopy, and another who didn't want 
to do any diagnostic tests and thought she should get pain management 
counseling.  We tried working with a pediatric group, who freely 
prescribed antibiotics and referred us to specialists for all her 
different symptoms.  Those specialists couldn't identify what was wrong 
and would either insinuate that she was faking her problems to get 
attention or give her a diagnosis that was more of a life sentence than 
the beginning of an approach to healing.  We tried the "alternative 
medicine" route, and she took all sorts of supplements, (up to 15 a 
day) some of which helped for a while but ultimately she felt worse.  
One "alternative doctor" sold us a supplement that we later found out 
contained gluten.  Using naturopathic doctors, we found out that our 
daughter has IgG allergies to milk and dairy, but even cutting out 
those foods completely (egg) or mostly (dairy -- just couldn't 
completely give up M&Ms), her problems continued.  She tried enzymes to 
help her to digest her food (no apparent affect), homeopathic remedies 
(occasionally helpful for reflux, nausea, motion sickness, acute gluten 
reactions), acupuncture (good for muscle pain but not other symptoms), 
osteopathic manipulation (seemed to have a positive effect but none 
lasting), and a chiropractor (helpful in dealing with structural 
issues).

The charm of Marber's approach (which is not his approach alone, but he 
is the first health practitioner to suggest it to us) is that it is 
simple and it focuses on a part of our daughter's  body that we know 
has been damaged by celiac disease and believe has been affected by 
multiple courses of antibiotics -- her small intestine. It makes a lot 
of sense to me to start addressing her problems where they started, not 
in the many locations where symptoms appear.  I also like that it 
starts with an comprehensive diagnostic but noninvasive test that will 
provide a picture of what is living in our daughter's small intestine, 
rather than looking for only one or two possible culprits.   (Note - 
initially, Marber wanted an analysis of all the bacteria, but he now is 
recommending a more comprehensive test that also looks for all 
parasites so he has a more complete picture.)

Even though this approach is appealing intellectually, we have no idea 
whether it will help.  Our daughter has received the test kit and will 
begin the stool sampling in the next few days.  I believe we should get 
results a couple of weeks later.  Then we will know exactly what is 
going on in her intestines and what herbs and diet that Marber thinks 
will help.   I will keep the list informed of what we learn and any 
changes in her health.,  If anyone else has gone through or finds 
doctors who follow a similar program, let me know and we can share our 
experiences.

Jackie in AZ

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