<<Disclaimer: Verify this information before applying it to your situation.>>
Thank you so much, everyone who replied. Your support has been just
wonderful.
I've decided *not* not get the biopsy done, but to go gluten-free. I've
summarized responses by category, below; the numbers after each idea
represents the number of responses with that idea. I've also put some
comments below some of the categories, enclosed by "--" marks.
Best regards all, and thanks again,
Suzanne
Misconceptions about Celiac Disease
* Celiac disease is not "rare" (5)
* Being overweight doesn't mean you don't have celiac (8)
Celiac symptoms
* You sound like "the perfect Celiac" (7)
* Bone and joint pain can be symptoms of celiac/R.A. can be related to
Celiac (11)
* Depression is the most common symptom of Celiac (1)
* RA may go away with gf diet (2)
* Article on early Celiac diagnosis
http://www.celiac.com/st_prod.html?p_prodid=694
* Gluten sensitivity/early stage Celiac may be a possibility (3); see
article at http://www.enterolab.com/Essay/ (1)
* Irritable bowel can be related to Celiac or can be misdiagnosed Celiac (4)
* Hyperparathyroidism could cause rheumatoid symptoms (1)
Don't bother with testing
* False positives with the blood tests are possible (20)
* Be gluten-free; don't bother with doctor's diagnosis (listen to your
body) (27)
* Prednisone could cause negative biopsy results as well; go gluten-free (2)
--this is ultimately what the Nurse Practitioner at the
gastroenterologist's told me the Gastro had said.--
* Celiac diagnosis isn't necessary (4), and may actually harm chances of
getting insurance (2)
--A *very* good point, and timely for me, since my husband
and I are starting a business, and may soon be getting our own insurance.--
Get tested
* Three weeks may not have been long enough for a gluten challenge (2)
* Get the biopsy done (10) - it's the "gold standard" of diagnosis (9)
* Get an endoscopic examination (1)
* Make sure the right blood titers were done. (2) Make sure IgA and AgA
tests are done. (1)
* Get tested for IgA deficiency - if you have this, bloodwork results
will be negative (4)
* www.enterolab.com for stool test (6); for genetic test (3)
--Enterolab's website lists IgA as the main thing tested
in both their blood tests and stool tests, so if one was IgA deficient...--
* Do other tests (stool, genetic, other blood tests, etc.)(3)
* Get genetic testing done (for HLA DQ-2 and 8) (3); if genetic tests
are positive, have the biopsy done. (1)
* Get checked for anemia - it's a sign of celiac (1)
--The gastro had a full blood workup done, as well as a
thyroid test; my iron levels were normal (not anemic), and my thyroid
funciton was normal--
* Might as well get a colonoscopy, too if you're over 35 (1)
--I'm not quite there yet.--
* Talk to your GP and s/he may want to talk to the gastro to encourage a
biopsy. (1)
* Prometheus Labs in CA are good for celiac work, especially genetic
testing: (888) 423-5227 (2)
* Read about testing on Braintalk Communities:
http://brain.hastypastry.net/forums/forumdisplay.php?f=141 (1)
Get a new doctor
* Find another doctor (13)
* Many doctors aren't required to have any nutritional training (1)
* Check for doctors at finerhealth.com (1)
* Check for doctors with your local celiac support group (1)
--Unfortunately, my gastro *was* one of the doctors
listed on the Atlanta, GA Celiac Disease support group's website (the
only one in Athens, I believe)--
Celiac maintenance
* To help heal the gut, in addition to being gf, take L-glutamine and
probiotics complex with each meal. For gluten attacks, take the
homeopathic remedy VERATRUM ALB 30C (1)
* Check with the Delphi Forum
http://forums.delphiforums.com/celiac/messages (2)
* Read Dr. Fine's article at
http://www.celiac.com/cgi-bin/webc.cgi/st_prod.html?p_prodid=946&sid=91hH9H0
(1)
* Helpful websites: www.celiac.com , www.glutenfreedrugs.com
* Helpful book: Dangerous Grains (2)
* Send administrative questions to [log in to unmask] *
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