<<Disclaimer: Verify this information before applying it to your situation.>>
Hi All!
It's been a while since I posted my question regarding CD as being a
potentially life threatening illness. I've been very busy with school
(but spring break just started -YEAH!) and I recieved a number of
replies and wanted to wait until the incoming mail started to slow down
a bit . When I posted my question, I myself basically already knew the
answer, yes celiac disease (CD) can be life threatening, what I was
looking for was specific literarure from credible medical sources to
back up what I knew to be true. The purpose of this was so that I could
"enlighten" my insurance company as to the severity of celiac disease
and the reason why having the biopsies read (after they had already been
taken) is such a crucial element of the complete treatment and therefore
the ins. co. should cover these expenses (which they aren't - YET).
First and foremost, ALL of you are truly wonderful people!!! So very
nice and willing to help in so many ways! Thank you all so very much!
Having been diagnosed with CD just last month, I honestly don't know
where I'd be without this listserv (in terms of support AND
information)!! Many replies I recieved did not necessarily give me
references, but they DID ALL offer me much sympathy, empathy, and/or
support. I can't even begin to tell you how much I appreciate your
sincere concern!!!! I also recieved some responses that actually
directed me to sources of information that I might find useful. MANY
MANY THANKS TO ALL OF YOU! That was EXACTLY the kind of info I was in
need of to submit with my letter of appeal to my ins. co. And a BIG
thanks to those who suggested I call the state insurance commision!!
First, I will list the websites that were suggested to me as info
sources regarding the potential CD has of being life threatening:
http://www.panic.com/~donwiss/ - specifically the Dr. section
http://www.celiac.com/celiac90.html - starting w/ lymphoma in the
small intestine
http://www.celiac.com - Dr. Joseph Murray's summary, FAQs, and treatment
http://www.fastlane.net/homepages/thodge/archive.htm - Ted Hodges site
http://www.rdz.stjohns.edu/lists/celiac/index.html - but OF COURSE!!!
http://www.nejm.org/publicM/1996/0334/0018/1163/1.htm - New England
http://www.nejm.org/publicM/1996/0334/0018/1190/1.htm Journal of
http://www.nejm.org/publicM/1996/0334/0020/1316/1.htm Medicine website
http://www.nejm.org/publicM/1996/0035/0021/1116/1.htm and articles
Ok, now please bare with me this next (and final, but LONG!) list is a
compilation of references/citations from the various articles I found
regarding celiac disease and it's potential of being a serious and/or
life threatening illness. I am including this as I hope it may one day
be of help to someone that may have to go through the same "stuff" I'm
going through with my insurance company (or anything else for that
matter) This took me quite a long time to go through all of this
literature, and I hope this compilation may save someone LOTS of time
when they need this type of information. Ok so, here it goes:
CITATIONS OF CLINICAL STUDIES AFFILIATED WITH CELIAC DISEASE AND
IT'S ASSOCIATED SYMPTOMS
Catassi C, Ratsch, IM, Fabiani E, et al. Coeliac disease in the year
2000: exploring the iceberg. Lancet 1994; 343:200-203.
Collin P, Reunala T, Pukkala E, Laippala P, Keyrilainen O, Pasternack
A. Coeliac disease - - associated disorders and survival. Gut 1994;
35:1215-1218.
Cook, Gupta, Pertschuk, Nidzgorski. Multiple sclerosis and
malabsorption. Lancet 1978; June 24 p.1366.
Egan LJ, Stevens FM, McCarthy CF. Celiac disease and T-Cell lymphoma.
N Engl J Med 1996; Nov. 21 vol. 335 no. 21.
Egan LJ, Walsh SV, Stevens FM, Connolly CE, Egan EL, McCarthy CF.
Celiac-associated lymphoma: a single institution experience of 30
cases in the combination chemotherapy era. J Clinical Gastroenterol
1995; 21:123-129.
Epstein A, Graeme-Cook FM. A 79-year-old woman with anorexia, weight
loss, and diarrhea after treatment for celiac disease. Weekly
Clinicopathological Exercises: case 15 - 1996; May vol.334 no. 20.
Fantelli, Mitsumoto, and Sebek. Multiple sclerosis and malabsorption.
Lancet 1978; May 13 1039-1040.
Fine KD. The prevalence of occult gastrointestinal bleeding in celiac
sprue. N Engl J Med 1996; 334:1163-1167.
Fineli, et al. Adult celiac disease presenting as cerebellar
syndrome. Neurology 1980; 30:245-249.
Gobbi G, et al. Coeliac disease, epilepsy, and cerebral
calcifications. Lancet 1992; 340: 439-443.
Hadjivassilliou M, et al. Does cryptic gluten sensitivity play a part
in neurological illness? Lancet 1996; 347:369-371.
Halstead CH. The many faces of celiac disease. N Engl J Med 1996;
334:1190-1191.
Hoggan R. Considering wheat, rye, and barley proteins as aids to
carcinogens. Medical Hypotheses 1997; 49:285-288.
Holmes GK, Prior P, Lane MR, Pope RD, Alan RN. Malignancy and celiac
disease - - effect of a gluten-free diet. Gut 1989; 30:333-338.
Holmes GK, Stokes PL, Sorahan TM, Prior P, Waterhouse JA, Cooke WT.
Coeliac disease: gluten free diet and malignancy. Gut 1976;
17:612-619.
Isaacson PG, O'Conner NTJ, Spencer J, et al. Malignant histiocytosis
of the intestine: a T-Cell lymphoma. Lancet 1985; 2:688-691.
Isaacson P, Wright DH. Intestinal lymphoma associated with
malabsorption. Lancet 1978; 1:67-70.
Kelly CP, et al. Diagnosis and treatment of gluten sensitive
enteropathy (GSE). Adv Intern Med 1990; 35:341-363.
Kemppainen T, Kosma V-M, Janatuinen E, Julkunen R, Pikkarainen P,
Uusitupa M. Nutritional status of newly diagnosed celiac disease
patients before and after the institution of a celiac disease diet -
association with the grade of mucosal villous atrophy. Amer J Clin
Nutr 1998; 67:482-487.
Loughran TP Jr., Kadin ME, Deeg HJ. T-Cell intestinal lymphoma
associated with celiac sprue. Ann Intern Med 1986; 104:44-47.
Mora S, Barera G, Ricotti A, Weber G, Bianchi C, Chiumello G. Reversal
of low bone density with a gluten-free diet in children and
adolescents with celiac disease. Amer J Clin Nutr 1998; 67:477-481.
Moroz C, Marcus H, Zahari I, Dinari G. Is celiac disease a
premalignant state? Lancet 1988; 2:903-904.
Not T, Horvath K, Hill ID, Fasano A, Hammed A, Magazzo G. Endomysium
antibodies in blood donors predicts a high prevalence of celiac
disease in the United States. Gastroenterology 1996; 110 Supp: A351
Abstract.
Robertson DAF, Dixon MF, Scott BB, Simpson FG, Losowsky MS. Small
intestinal ulceration: diagnostic difficulties in relation to coeliac
disease. Gut 1983; 24:565-574.
Roehrkasse RL, Roberts IM, Wald A, Talamo TS, Mendelow H. Celiac sprue
complicated by lymphoma presenting with multiple gastric ulcers.
Gastroenterology 1986; 91:740-745.
Salter DM, Krajewski AS, Dewar AE. Immunophenotype analysis of
malignant histiocytosis of the intestine. J Clin Pathol 1986;
39:8-15.
Skinner JM. Gastrointestinal lymphoma. Pathology 1985; 17:193-203.
Swinson CM, Slavin G, Coles EC, Booth CC. Coeliac disease and
malignancy. Lancet 1983; 1:111-115.
Tanchon S. Statistics of Cancer. London Lancet 1843; Aug. 5, 593.
Wink A, et al. Disappearance of mesenteric lymphadenopathy with
gluten-free diet in celiac sprue. J Clinical Gastroenterol 1993;
16(4):317-319.
Wright DH, et al. Celiac disease and lymphoma. Lancet 1991; 337:1373.
Wright DH, Jones DB, Clark H, Mead GM, Hodges E, Howell WM. Is
adult-onset celiac due to a low grade lymphoma of intraepithelial T
lymphocytes? Lancet 1991; 337:1373-1374.
So there you have it! (I hope) Please note this is just a PARTIAL list
of citations. I've learned alot through this ordeal and there is SOO
MUCH information out there available to us all with just a click of the
mouse! I hope I didn't bore you all to death! And I hope my
researching may be of help to others some where down the line!
Again, Thanks to ALL of you who responded to my calls for help!!
Sincerely,
~Whitney~
|
