Group Letter to Dr. Fine

[jerseyangel]

FYI, after doing more research and spending much time writing and editing, Dr. Fine has completed his research paper and has submitted it for publication.

Yeah!

Hi Anna--welcome to the board and thanks for bringing us the good news!

[Anna]

That is wonderful news, Anna! I can't wait to read it! Do you know where it may ultimately appear? Please pass my congratulations and thanks to Dr. Fine. Because of his work, both my sister and I had the impetus we needed to pursue and benefit greatly from a gluten free diet, despite negative results from conventional testing. Hopefully, this will open up a new option to many and convince doctors that there are other testing options.

May I share this information on another gluten free forum which has several members that have benefitted from Dr. Fine's work?

Laurie

Hi Laurie,

I think it would be fine to share this on the other forum. I do not know yet where it will ultimately appear. I plan to shout it to the mountaintops when I know that answer

Anna

[Linda Roderigues ND]

Okay, folks--let's play around with this letter, and see if we can tweak it to be something we all feel comfortable signing!

Dear Dr. Fine,

We are several people with diagnoses of celiac disease, gluten intolerance, and possibly further issues, and we are all members of the glutenfreeforum at www.celiac.com.

Many people here have been diagnosed by Enterolab, and, while some have had wonderful results from the gluten-free diet, others have had no improvement whatsoever from symptoms, despite rigidly adhering to the diet.

A few others have been diagnosed as gluten-intolerant by Enterolab, despite being symptom-free, and in spite of adopting a rigid gluten-free diet, follow-up tests from Enterolab showed NO improvement.

This has been the topic of heated debate amongst us, as you can imagine.

We did all manage to agree on one thing--that we needed to communicate with YOU for clarification and further information.

Perhaps our most important question is this: if there conditions (such as Lyme Disease and other intestinal bacterial infections) that can cause false positives, then isn't it possible that Enterolab's test is inaccurate specifically for those people with non-gluten-induced positive results?

It is a major concern, as some people have delayed looking for other causes, as they were sure that gluten intolerance was their one and only problem, not realizing that other conditions can CAUSE gluten intolerance.

Another question that has often come up on this board is, when will your results be published, and what is taking so long? Since so many people on this board are relying on Enterolab, and are coming up against their own doctors and insurance companies who call Enterolab's results "invalid," we do feel that we, the consumers, have the right to know what's going on, since so many of us have been told for so long that "Dr. Fine is about to publish!"

And finally, a comment, not a question: A couple of members here contacted you when they noticed absolutely no improvement of their symptoms while ABSOLUTELY gluten-free for many months. You apparently told them that they must not have been adhering to the diet.

Surely you realize that this is similar to their primary care practitioner's claiming that their symptoms are in their head, or that they need psychiatric care, or that they are perfectly healthy? PLEASE don't turn the blame on the patient without knowing the details. Otherwise, you run the risk of manipulating the data--just like the pharmaceutical companies we all despise.

Sincerely, etc.

Blah

Blah

Blah

Hello All,

As a naturopathic doc, I have referred my patients & family members (since celiac disease is in my family, I have had positive testing, & did my medical thesis on celiac disease) to Enterolab for testing.

In my humble professional opinion, there are a number of reasons why some people do not show as much improvement as others.

For one thing, often those with Celiac Disease have food allergy/sensitivity as well... they go hand in hand, since the disruption of the intestinal lining allows larger proteins to pass through, the body created antibodies to these proteins, causing food allergy. So if one has eliminated gluten but has undiagnosed food allergy, then they still feel quite ill.

Another reason is that, yes, Lyme Disease, might be another issue, and still not addressed. Some of my patients with LD are still feeling ill, even after proper treatment, but later find they have either Celiac or gluten sensitivity, and then when they deal with this aspect they do feel much better.

Yet another issue may be that, because of long term Celiac Disease or GS, people may have other underlying problems from long term nutritional deficiencies. I have seen patients who have underlying hormonal imbalances, etc. that can make them feel pretty poor.

I hope this information helps some of you to understand there may be other possibilities for the continuing poor health.

Blessings & Good Health,

Dr Roderigues