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Date: | Thu, 24 Apr 1997 12:41:21 EDT |
Content-Type: | text/plain |
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<<Disclaimer: Verify this information before applying it to your situation.>>
Following you will find the results of the survey which I started
on 3\21\97. Please understand that I am not a medical professional and
this survey is one that was conducted by a patient for other patients and
is not intended for medical advice or treatment. Hopefully those patients
that read this survey may feel that they are not alone in the world, if
so then I have obtained my objective. I have included both officially and
self diagnosed patients because there are so few of us, and I did not
want to leave anyone out, how ever I did show the information in separate
and combined form where practical.
The survey is as follows.
There was a total of 33 responses to this survey, 22 officially diagnosed
and 11 self diagnosed or uncertain. Not all respondents answered all
questions so I used what information that I received. I used all
information as I received it with out trying to interpret it, or change
it, in any way.
1. How long have you been diagnosed with DH?
Officially 22 of 22 Total 143.1 yr. Average 6.5 yr. Range 1 mo. to
23 yr.
2. If not officially diagnosed, how long do you believe you have
had DH?
Self 10 of 11 Total 119.5 yr. Average 11.6 yr. Range 6 mo. to 45 yr.
Combined 32 of 33 Total 262.6 yr. Average 8.2 yr. Range 1 mo.
to 45 yr.
3. How long did it take to diagnose DH officially or otherwise?
Officially 21 of 22 Total 158.2 yr. Range 3mo. to 48 yr. Average 7.5
yr.
Self D. 4 of 11 Total 14 yr. Range 1 to 9 yr.
Average 3.5 yr.
4. What were the first symptoms associated with your diagnoses?
Officially 22 of 22 Itching 2 Rash 11 Blisters 9 Other 0
Self D. 11 of 11 Itching 2 Rash 6 Blisters 2 Other 1
Combined 33 of 33 Itching 4 Rash 17 Blisters 11 Other 1
5. Are you on a GF diet?
Officially 21 of 22 Yes 19 No 2
Self D. 11 of 11 Yes 10 No 1
Combined 32 of 33 Yes 30 No 3
6. How long have you been on a GF diet?
Officially 19 of 22 Total 68.35 yr. Range 3mo. to 15 yr. Average
3.6 yr.
Self D. 11 of 11 Total 68.72 yr. Range 1mo. to 24 yr. Average
6.2 yr.
Combined 30 of 33 Total 137.1 yr. Range 1mo. to 24 yr. Average 4.6
yr.
7. How would you rate your diet?
Officially 22 Very strict..11.. Some what strict...7... Off and
on..2.N/A..2
Self D. 11 Very strict...5.. Some what strict....5....Off and
on.... N\A..1
Combined 33 Very strict..16. Some what strict..12.... Off and on.
2..N\A..3
8. How does your diet affect your symptoms? If it does.
Please explain.
Officially 21 of 22 Positive 13 No Effect 4 Uncertain 4
Self D. 11 of 11 Positive 10 No Effect 0 Uncertain 1
Combined 32 of 33 Positive 23 No Effect 4 Uncertain 5
9. Do you get a red rash like symptom? If so does it itch?
Officially 22 Rash 17 Itch 15 Red bumps are mentioned
Self D. 11 Rash 7 Itch 7
Combined 33 Rash 24 Itch 22
10. Do you get watery blisters? If so do they itch? Do all the blisters
itch or do some blisters come up with out itching?
Officially Blisters Yes 20 No 1 Itch Yes 19 No 1 N\A 1
Self D. Blisters Yes 9 No 3 Itch Yes 10 No 2
Combined Blisters Yes 29 No 4 Itch Yes 29 No 3
Several responses indicated that not all blisters itched.
11. Do you have typical CD symptoms? Please explain.
Officially 21 of 22 Yes 15 No 6
Self D. 11 of 11 Yes 7 No 0 ? 4
Combined 32 of 33 Yes 22 No 6 ? 4
12. Do you have any other symptoms? Please explain.
Officially 22 of 22 Yes 9 No 10 ? 3
Self D. 11 of 11 Yes 7 No 3 ? 1
Combined 33 of 33 Yes 16 No 13 ? 4
Read individual surveys for additional symptoms.
13. Can you tell if you have eaten gluten?
Officially 18 of 22 Yes 11 No 2 ? 5
Self D. 11 of 11 Yes 9 No 1 ? 1
Combined 29 of 33 Yes 20 No 3 ? 6
14. How long does it take you to be aware that you have eaten gluten?
Officially 18 of 22 In Min. 3 Hr. 12 Day. 2 Wk. 1
Self D. 11 of 11 In Min. 2 Hr. 7 Day. 2 Wk. 0
Combined 30 of 33 In Min. 5 Hr. 20 Day. 4 Wk. 1
Separately or combined 83% react in hrs. while 17 % react in days.
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms?
Officially 22 of 22 Yes 9 No 11 ? 2
Self D. 11 of 11 Yes 6 No 4 ? 1
Combined 33 of 33 Yes 15 No 15 ? 3
16. Do you feel that any important questions have been omitted? If so
what are they? Please answer those questions.
Officially 21 of 22 Yes 13 No 8
Self D. 11 of 11 Yes 5 No 6
Combined 32 of 33 Yes 18 No 14
Read individual surveys for more detail.
I will summarize and compile this information with out
identification. If any professional would like to make a statement
of any kind I will include it WITH identification. It is my hope that
we can all benefit, at least to some extent, from this survey, and I
thank every one in advance.
Sincerely, James Doubravsky
Riverside, CA. [log in to unmask]
The completed survey information is available as a reference file. To
obtain this long file, send this request to:
[log in to unmask]
GET CELIAC TMPFILE1
Please note that REPLIES to this message will not obtain a copy. It must
be a NEW message to the Listserve address. Subscribers who are using JUNO
as their providor should use this form of the GET command because of its
lenght.
GET CELIAC TMPFILE1 split=2
James A. Doubravsky Riverside, CA. [log in to unmask]
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