Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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/ Common Variable Immunodeficiency Support Group

Results of CVID Questionnaire

kelli1b
kelli1b
We got 14 responses. Not the 100 I had hoped for lol but I'm still very happy. Here is a link to the published form:

https://spreadsheets.google.com/pub?key=0Ah8YUqKh3wAvdHZVUkctM2NxNFllZFZtMF93RE9wX3c&output=html

When I am viewing the document I can select "form" and "view a summary of responses" and it will show the percentages. I CANNOT for the life of me get those responses in the actual form (ugh) sorry :( It has been suggested to me to ask for responses from IDF. What are your thoughts? Are you happy with our 14 responses or would you like to see more?
kelli1b
kelli1b
Aw I'm sorry to hear you have Celiacs - seems every time I turn around we are being dx with something new huh? Love this stupid CVID
PrincessButtercup
PrincessButtercup
Tomorrow I have an appointment with Dr. Lewis (my Immunologist), and I plan to take a printout of these results to him. I don't know whether it will help them with anything, but I think he and his staff might be interested to know that we're collecting data.
deleted_user
deleted_user
great idea princess
PrincessButtercup
PrincessButtercup
Today I gave a copy of the most recent results of the questionnaire to Dr. Lewis' Fellow, and she seemed genuinely pleased and interested. :)
markincleveland
markincleveland
carolajaine, How did they diagnose your "Celiac"? If they did the blood test, you need a new GI doc. He should know the resolutes are meaningless if you are in IG therapy. Seriously if that is the case find a new fi DOC, HE IS NOT THE DOC TO TREAT YOU.

All he is was test the IViG you got through the needle . .he tested the pool of 1000 donors and found out that one of them has Celiac. In other words he wasted your insurance company's money and your time. If he did the Genetic test, it is only a rule out test. 30% of the US population test positive for one of the defective genes and most of they a symptom free. Unless you have gone through endoscopes, at least 6 months apart and were on a totally gluten free diet, you have no idea if you have Celiac.

There is research by a Peter Mannon, that he did while at the NIH , that suggests there is a special bacterial overgrowth that mimics Celiac, but is not Celiac and may or may not respond to a gluten free diet., but in any case. he believes Celaic is way over diagnosed in CVID patients. good luck