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Leaves

Thank you all for your thoughtful responses. First, I will provide the information that I had not sent initially. The blood test that came back positive for my 8 year old son was transgutenaminase Tissue and IGA (not made clear which version). I was not told how many biopsy samples were taken and the specialist did give answers to my questions regarding what other conditions besides celiac could make the blood result positive, except to say he had no experience with test being positive and biopsy negative. After my insisting on some sort of clarification, he has now agreed upon a second blood test. My son was sent to him because he has been vomiting, stomach and diarrhea, almost daily since July, 2002 and the initial tentative diagnosis was acid reflux disease. Other less pressing general health issues he is asthmatic with severe colds, has weak teeth (some broken off by age one and a few adult ones came in with patches missing enamel), pre spina bifita, and below average height/weight (now at 25 percentile). Educationally, has been described as extraordinarily bright and is sensitive, considerate and well behaved. However, he is so absent minded that when he has his zippered pants on backwards no one is surprised. Also, he does not learn (one year behind in reading), often missing one day per week due to illness. 
Note: On Friday I decided to go to a drop in clinic to request a blood test as I suffer milder but similar symptoms, hoping that if I was positive, that a my son's problem might be clarified. The doctor there indicated the blood tests are useless (only 50% accuracy) and that he never recommends it be taken unless the person presents anaemic (he has only diagnosed on cas of celiac in his 30 year practice). Even if the test is positive, he does not recommend that anyone go gluten free unless they are anaemic because, he stated, if you remove gluten from your diet and reintroduce it later, if you try to go back to gluten free at a later date the symptoms will not abate. At this point, I have read nothing to substantiate such a claim so if anyone has heard this to be true, please email me. 
I have had my son almost gluten free for two weeks, and he is no longer vomiting and say his stomach feels better but not normal. I say almost because another celiac and web site said rice crispies were allowed. After I read the box(malt flavoring), I phoned Kellogg's who said they received calls asking this question daily and that none of their cereals are GF. I also went to a health food store and was told spelt is GF (wrong) and he sold me organic chicken flavouring base as GF (yeast so I assume again wrong).  I can now read labels better and frequent a more aware organic store, one that plans on having a complete line of GF foods in a couple months and to give GF cooking lessons. Also, there is a GF bakery 15 minutes away where I can buy 4 kinds of bread, cookies, cakes, squares, fruit and meat pies and even sausage rolls. I mention this because it is through reading this site that I am getting the savvy to understand the GF dietary requirements.  
However, back to your responses. I hope you forgive me for not doing justice to them in this summary, remembering that I asked because I am not well informed. Total e-mail was 65 and age range of people referred to in responses was 18 months to in their 70's.
THREE AGAINST GF DIET, In a nutshell, the general consensus was if I trust the doctor, then I should trust the finding that he is not celiac. Recommended that I continue him on a regular diet and in a month or six months, redo blood tests. Reasons for not making GF without further evidence is diet is not trivial or convenient to follow and it is expensive. Also concern was expressed that celiac disease may not be the cause and change in diet may delay diagnosis of real problem.

SIXTY TWO GAVE REASONS FOR PUTTING HIM ON GF DIET- 
This group considered a positive blood test proof enough to start the diet, but I was queried on the testing he underwent. I was told there are 5 blood tests:  IgA, IgG, Endomysial and Tissue Transglutaminase, and Serum IgA and if he did not do the last one, the tests might be compromised if you were IgA deficient.  The Endomysial and tTG tests are the most  sensitive and specific for CD. Positive blood test means he is allergic to gluten and most said, irrespective of negative biopsies, their symptoms went away after starting GF diet. It was suggested that blood test will likely turn up positive before stomach damage has occurred and to consider myself lucky it was caught. One person recommended that I read the book "Dangerous Grains" for other risks associated with being gluten intolerant.

It was said repeatedly that biopsies have not been found to be accurate, even though they are required for a diagnosis of Celiac. I was told that European researchers feel that biopsies are definitely not the most reliable way to determine Celiac disease, and many no longer require it for a positive diagnosis. One person said a US study by Dr Steven Werlin also indicates that if the antibodies are there, eventually damage will follow. Other's concurred. saying that their symptoms, combined with a positive blood test were enough for their physician to make a diagnosis. Concern was expressed that a neg. biopsy may lead to a false sence of security and result in the person not go for testing again.  

There were individuals who e-mailed that they had indeed initially had positive blood and neg. biopsies and later positive biopsies. One person said they had a negative biopsy 10 years ago (no blood test) but a recent endoscopy for another reason came back positive for Celiac, as well as the subsequent blood test. A mom said when her daughter was eight she had negative biopsy so was not taken off gluten. By age 13 her daughter had a positive celiac biopsy and developed lupus.  

I was also warned of testing error and to get a second opinion, with a number of recommendations made.  This pertained to the biopsy rather than the blood tests, although one person stated the blood test came back negative, only to have the doctor call and say that they had found injury typically associated with celiac disease. A basic source of biopsy error is simply going on a GF diet beforehand. This is especially true in children, the damage may heal quickly. Also, the reading may not be accurate do to not the spotty nature of the nature of the damage, that there may not have been enough samples taken (one informed person recommended 8-20). How the sample was prepared may be a source or error with one woman's 7 yr. old daughter initial negative biopsy being found to be positive when the lab report and her slide biopsies were sent for another opinion (specimen botched). The expertise of the physician may also is a factor, with another person's reporting their neg. biopsy was reinterpreted as "Highly suggestive of celiac disease" when reviewed by an expert.

Most people asked of symptoms and said to monitor those, recommending to put him on a GF diet (majority by far said 6 months) and then redo the blood test to see if the results change. One mom of a toddler who manifested extreme symptoms, put the child on a GF diet and the symptoms went away. However, the doctor insisted on gluten challenge for biopsy and when gluten was reintroduced, the symptoms came back (including blood in stool). The biopsy was not done and the child returned to GF diet but took a year to alleviate symptoms again. Another person stated that 'I tried eliminating gluten as a desperate measure.  I had to do something or die.  It only took a couple of days of gluten-free eating to start feeling better and not having diarrhea'. Most said that they wished they had been on the diets years ago as the older you get the longer the healing takes.
 
The main message was that things might work out best if I trust my instincts. If he is sick and becoming GF helps, then nothing else really matters. One mom who had been sick for years with a blood test positive but neg biopsy neg., eventually had her three children eventually blood tested, all of whom were positive. The child with the least symptoms had most damage shown in biopsy. The mother then decided to make all family meals GF, irrespective of biopsy results and the whole family is feeling much better.
Thanks again,
Deborah, Vancouver 

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