<<Disclaimer: Verify this information before applying it to your situation.>>

Congratulations to all who responded to my "sleepers" survey. I think
we have come up with something very useful here.

There were 25 responses from "sleepers"; I couldn't include two other
replies because they gave no indication of having an above average
sleep requirement. When considering the survey results, REMEMBER that
this survey is  LIMITED to cd patients who (before they began the gf
diet) required above average amounts of sleep, usually, and very large
amounts of sleep when ill.

For ease of comparison I've presented the results as percentages. I
didn't always get a complete set of answers from each person who
replied. I indicate the number of replies and show the results as a
percentage of the answers received.

Weight (25 replies):
84% not underweight      8% slightly underweight       8% underweight
The 84% breaks down: 44% about the right weight   40% overweight

Lack of energy (25 replies): 96% yes    4% no

Moody/Irritable (25 replies): 96% yes    4% no

Depressed (25 replies): 96% yes    4% no

Signs of weak immune system (24 replies): 88% yes     12% no

Diarrhea (25 replies): 68% yes    32% no
(2 people had no diarrhea when cd symptoms first appeared. But 10 - 12
years later diarrhea started and both were diagnosed within 1 year
after that!)

DH (23 replies): 17% yes    26% other skin problems     57% no

Anemic (25 replies):  40% yes    28% low/borderline    32% no

Had blood test before gf (25 replies): 20% yes (all pos.)     80% no

Had a biopsy before gf (25 replies): 16% yes (all pos.)   84% no
Of the 4 who had a biopsy, one person showed ONLY 2 symptoms (fell
asleep at every meeting and had occasional diarrhea - note no
fatigue, no moodiness) and the villi were "clumped" not flat.
2 others reported "villi totally flat".

Could fall asleep anywhere (25 replies): 60% yes      40% no

Dyslexic (25 replies): 20% yes        80% no

Treated for something else, instead of cd:
87% yes (Infections, IBS & depression mentioned by many)     13% no

Possibility of cd first suggested by (25 replies):
44% self        32% doctor       24%other

*******************************************************
Response to gf diet:

All symptoms gone (24 replies):
32% yes        78% much improved but one or two symptoms remain

Those with long standing infections (10 replies):
100% reported "infection cleared" (throat & sinus mentioned by many).
2 had their sinus examined by ENT specialists and both specialists
said it "looked like an allergy".

Change in weight on gf diet:
64% no change    16% increased    20% decreased
*******************************************************
Analysis of the survey results:

1)
Patient's weight and AVERAGE duration from first symptom to diagnosis
(based on 25 replies)
Underweight patients; average 2yrs from first symptom to diagnosis
"About right" patients; average 15yrs from first symptom to diagnosis
Overweight patients; average 19yrs from first symptom to diagnosis

2)
Age when symptoms first appeared and AVERAGE time to diagnosis:
(based on 24 replies)
Symptoms appeared 0-9yrs (21% of total number) 27yrs to diagnosis
(none of this group of 5 were underweight)

Symptoms appeared 10-19yrs (38% of total number) 13yrs to diagnosis
(one of this group of 9 were underweight)

Symptoms appeared 20-29yrs (29% of total number) 10yrs to diagnosis (2
of this group of 7 were underweight)

Symptoms appeared after 29yrs of age (12% of total number) This
consisted of 3 people:
Patient A waited 18yrs until diagnosis (was overweight)
Patient B waited 5yrs until diagnosis (was about the right weight)
Patient C waited 1yr until diagnosis (was slightly underweight)

Notes:
1)
Based on e-mail addresses; 22 replies seemed to come from the USA,
1from Australia, 1 from the Philippines and 1 from Ireland

2)
Bear in mind that this survey was done via e-mail. This may influence
several characteristics (e.g. the age profile) of the population
sampled.

3)
While my (light hearted) parting-shot was not intended as a part of
the survey, it is worth noting the responses which it unwittingly
received. There were 17 responses. Among them: 2 were very happy with
their doctor's performance 2 felt that cd "after-care" was very
difficult to find 2 felt the doctor did not understand them/did not
take them seriously 4 expressed dissatisfaction with the doctors who
had dealt with them 3 changed doctors because they had moved house

*****************************************************
Surveyor's comments:

25 replies (out of say 1900 on the list) and a brief e-mail exchange
with Dr. Joseph Murray (University of Iowa) lead me to think that the
"sleepers" make up a very small group within the celiac community. On
the other hand, it strikes me that the symptoms of the
"sleeper-celiac" are very clear. 3 replies (out of 25) tell that the
doctor MENTIONED playing with the idea of possible cd, but dismissed
it on the basis of the patient's general good health/ or weight (i.e.
not underweight). We will never know how many other doctors played
with the same idea silently and dismissed it silently. It must be
pointed out that some of the doctors mentioned in replies, recognized
cd very quickly.

If medical researchers could expand on this work and publish in
appropriate medical journals, perhaps this apparent lack of
knowledge, within the medical profession, might be addressed. It is
well known that celiacs on a normal diet may not be underweight. This
preliminary study suggests that such patients may even look very
healthy but this may be because the patient is repairing some of the
damage by excessive sleep. (1 reply reported no fatigue, no moodiness
but ONLY occasional diarrhea and unable to stay awake at meetings.
The biopsy showed "clumped" villi.)

A thing about blood tests: 2 replies mentioned low cholesterol levels
and Dr. Murray has found this to be common in celiacs. Again, I
suggest that research and publications on this topic would do much to
help the medical profession diagnose correctly and quickly.

Thanks to all who took part and also to those who sent info and
suggestions.

Muiris in Dublin, [log in to unmask]