New Survey For Honor's Biology

[bioproject]

Hello, my name is Kristin and I am a freshman in High School. For my Honors Biology class we are doing long-term projects and I chose to do research on Celiac Sprue. This survey is a major portion of my long-term project. I would be very appreciative if you would fill out the below questions:

1. Are you male or female?

2. What ethnic race are you?

3. What age did you first recognize that you were sick? What age did you get diagnosed?

4. What was your average weight and height before diagnosis and one year after your diagnosis?

5. Are you doctor-diagnosed or self-diagnosed? And what year?

6. If you are doctor-diagnosed, please list the various tests that the doctors did (upper gi, endoscope biopsy, etc).

7. Does it include dairy, yeast, etc?

8. Do you have any other type of diseases, related or not? Please list.

9. How long of time was there between when you first recognized you were sick to when you were doctor-diagnosed or, in the alternative, self-diagnosed?

10. In your family, does Celiac Sprue or a related disease appear more often in female or male relatives? Please list all relations and include what gender and related disease (celiac sprue, crohns, colitis, etc).

Shortly after I was born, my mother was doctor-diagnosed with Celiac Sprue at 23 years of age. This has affected our family

[jen3899]

1. Female

2. white

3. Got sick at 15, diagnosed at 16

4. When I was sick I had lost 30 lbs, I weighed 100lbs. 1 year after diagnosis I weighed 120 lbs, and now almost 2 years after diagnosis I'm still 120

5. Doctor diagnosed. I was diagnosed in April 2002

6. At first they did blood work and that was negitive for celiac disease. Eventuall they did the upper and lower endoscopy/biopsy.

7. Sometimes I think Lactose bothers me more than gluten... Just Lactose & Gluten.

8. Nope

9. Almost a year

10. Aunt on Fathers side has Colitis, Grandmother on Mothers side has very sinsitive stomach but nothing diagnosed.

Glad to help, just email me with any ?'s jen3899@yahoo.com

-Jennifer

[judy04]

Her's my contribution:

1.Female

2. Caucasian

3. All my life, mostly allergies.

4.Sl. overweight, hoping to lose.

5. Dr./ November 2003

6.GB scan, upper G.I., Endoscopy, Colnoscopy, Bloodwork (celiac panel)

7. milk, some cheese, egg yolks, tomatoes. probably more, still testing

8.High blood pressure, thyroid, allergies (trees, grass, mold, ragweed and of course, wheat.)

9. GI problems began March 2003, diagnosed wheat allergy. poss gluten intolerance in Nov.2003...

10. Families : females: thyroid, diabetes, hbp, suspect celiac in maternal gandmother. Males: brother has dyslexia,heart disease, father diabetes

died of cardiac arrest.

Hope this helps...

[GFdoc]

1. Female

2. Caucasian

3. I did not know that I was sick - my symptoms were not clearly related to celiac disease. (acid reflux, lactose intolerance, sacroiliac arthritis, frequent canker sores). I was diagnosed at age 40

4. My weight hasn't changed since diagnosis ( it's only been 5 months)

5. Doctor diagnosed (he was looking for something else, not celiac disease, actually). 2003

6. Endoscopy with biopsy

7. Just gluten - I'm OK with most dairy, and I think it's improving as I heal

8. Environmental allergies (molds, dust), sacroiliac arthritis, acid reflux, mild asthma

9. As I said before, I didn't really think of myself as sick...my symptoms didn't seem to be related (and I had no classic GI symptoms). My internist wanted me to get the endoscopy done to look for a precancerous state associated with severe reflux - surprise! I didn't have what he was looking for, but they found celiac disease instead.

I had been seeking help for my arthritis from various doctors/physical therapists for about 15 years though. My reflux has been severe for about 4-5 years.

Both the reflux and the arthritis have dramatically improved since going gluten free.

10. My mother has allergies and "sensitive stomach" -

My father has High blood pressure

One brother has severe arthritis, allergies, lactose intolerance, stomach issues

One brother has allergies and mild osteopenia

(all have tested negative for celiac disease - although I suspect my brother with the arthritis may have it - I want him to get a biopsy)

By the way - I am a physician - and I didn't even consider that I may have celiac disease- just goes to show how overlooked it is! Thanks to my internist for pushing me to get scoped. Good luck on your project!

[gf4life]

1. Female

2. Caucasian

3. Symptoms started before age 4, 31 at time of diagnosis.

4. 185 lbs. 5'2" before diagnosis, 6 weeks into diet 178 lbs. still 5'2" (hasn't been a year yet)

5. doctor-diagnosed by Enterolab (Dr. Fine) in 2003; conventional blood tests and biopsy were negative

6. upper gi, lower gi, intestinal ultrasound, endoscope without biopsy, colonoscopy, endoscope with biopsy, food alergy blood tests, stool tests for parasites

7. dairy(casein intolerant), and I suspect yeast I am also allergic to soy

8. Psoriasis, Gallbladder disease, food allergies-soy, other allergies-severe for dust mites and alfalfa, mild for just about everything else.

9. I've been sick all of my life since I could remember. From the time that I found out about Celiac Disease and the time of diagnosis, 2 years, but I have been sick for more than 25 years.

10. Females in my family tend to have gallbladder problems and have their gallbladders removed by the time they are 25. Kidney disease and kidney stones are pretty common in the same females, all of whom have other symptoms of Celiac, but I am the only one to push for testing and get a diagnosis. I have a brother who had unexplained seisures as a child, and another brother who has chronic liver problems and hepatitis (as well as gastro problems), both who could have celiac disease. Two of my children (both boys) have asthma, and all three(2 boys, 1 girl) have allergies, like me.

[kejohe]

1. Male

2. Eurasian (mom/caucasian dad/chinese)

3. Age 1 @ onset & dx

4. 18# before 24# after 1 yr

5. Dr diagnosed via blood test, no biopsy 2001

6. ??? too long ago to remember

7. No, just the gluten, we got lucky

8. No

9. About 4 months of symptoms before dx

10. None other in the family have been dx'd yet, but there are 3 others that have symptoms, all female (mom, g'ma and great g'ma)

Hope this helps with your project, and I hope it doesn't matter that this was filled out by mom

[Dwight Senne]

1. Male.

2. Caucasian.

3. Have had symptoms since at least age 25 - 30. Was diagnosed at age 44.

4. 5'11" 160 lbs before, 5'11" 170 lbs now (about 9 months later).

5. Doctor diagnosed in 2003.

6. Upper G.I., Endoscopy (with biopsy), Colonoscopy, Celiac Panel blood test.

7. Just gluten right now, but doctor is suspecting possible lactose problems.

8. Hmmmm, is graying hair a disease? Seriously, no.

9. 15 - 20 years.

10. At this time, no other family members are doctor diagnosed. My mother believes she has the disease, but her doctor says no. She has gone on the diet and is doing much better.

Best wishes,

Dewey

Marion, IA

[tylormom]

Glad to help! I knew nothing about celiac sprue when I was diagnosed. I had never heard of it!

1) female

2)caucasian

3)45 y/o when realized symptoms and was diagnosed

I never thought I was really sick. I don't recall when the symptoms really began as it was very gradual. My main symptom was the anemia.

4)5'4" 145#

5'2" 160#

I have actually lost 2 inches in height due to malabsorption of vitamins.

5)Doctor diagnosed

6)endoscopic biopsy and blood test

Both tests were positive. My doctor sent me for tests due to my severe anemia - iron count was at 2 at the time of my diagnosis!

7)Dairy - tolerance to this is getting better

8)Acid reflux, joint pain, headaches

9) As I said, I didn't really know I was sick. I felt weak and tired. My family now says I really looked terrible, but no one wanted to tell me how awful I looked!

10)Celiac Sprue has never been diagnosed in anyone in my family. My father had numerous digestive problems - ulcer, sensitive stomach. My mom has had gall bladder problems as well as my brother. My grandmother, who is now deceased, may have had celiac. She exhibited many of the symptoms but was never diagnosed.

Good luck!

[carleyq]

1. female

2. white

3. 20

4. i've been a celiac for less than 4 months. i dont believe my weight has changed

5. my tests both blood and biopsy came back inconclusive.. probably due to the fact i was off gluten for 2 months before be biopsy.. 2003

6.

7.dairy, and possibly yeast

8. not that i know of

9. it took about a month to figure it out and start feeling better. self diagnosed

10. my mother has had food allergies and stomach/digestive diseases

[pmdny]

1.) Female

2.) Caucasion

3.) 1999, just 2 weeks ago 30

4.) Avg. weight was 105, I have only been gluten-free for 2 weeks and have gained 3.5 lbs.

5.) MD and Allergist (very high antibody), villae o.k. not flattened, 2004 - Eating gluten-free and feeling GREAT!!!!!!!!!!!!!

6.) Endoscope biopsy and Blood Antibody

7.) Cannot eat any dairy at this time

8.) Severe Endometriosis

9.) 6 years

10.) No other family members diagnosed at this time, HIGHLY suspect my mom has Celiac, but has not been tested to date

Good luck on your school project.

PMD

[corbintlg]

Kristin:

1. Female

2. White

3. Was diagnosed at 2. Was sick from about 2 months on.

4. baby?? now - 130 lbs., 5'4"

5. 1978 - doctor diagnosed

6. Because I was a baby - doctor did the blood tests and diet. Biopsy as baby is dangerous due to risk of injuring intestine. 13yrs old when they did biopsy.

7. I have problems w/any milk other than skim or 1% - nothing else.

8. thyroid disease

9. 2 yrs. - many docs

10. none are known. My son - 3 yrs old is getting ready to be tested, almost certain he has it. other son - 4 yrs. old shows no signs. noone in family was ever diagnosed with it but suspected to have come from father's side of the family wherein there was a lot of stomach, colon, intestinal problems.

I was gluten free for 10-12 yrs and then rebelled and started eat everything. No symptoms of any problems until I had my first son. I still feel that the pregnancy(s) triggered everything again. Now on gluten free diet again - for 1 1/2 wks.

Thanks. if I can be of any additional help my email is corbintlg@hotmail.com.

[debmidge]

Dear Kristin: A response to your 2/21 Celiac Report. I am answering on behalf of my husband:

1) Male

2) White - European descent (Italian, German and Danish)

3) First got sick at age 27 in 1977; age 53 now. Diagnosed at age 53

4) Weight at age 27 (12/1976) about 180 lbs 5' 10" - muscular, healthy, strong

Weight after first got sick (Jan 7, 1977) at age 27: went from 180# to 150# rapidly over 3 mos. - lost fat & muscle, lost strength; felt depressed & fatigued. Could not eat anything without feeling sick. Lived on rice and some beef & chicken and bread - hoping to stop the diarhhea. Much intestinal pain, diarrhea, gas, etc. Thought I was dying.

Weight slowly decreased from 1977 again and I was fighting to keep my weight at 140 thru the years of 1977 to present. I'd go down to 129 and then back up to 138.

Weight at time of diagnosis: Just lost 10 lbs - 132# but it's a struggle to keep it there. I belive my current height is 5'9" tall.

5) Dr. diagnosed. Every gastro I went to, and there were four from the time I was 27 to age 52, diagnosed me as having Colitis, Irritable bowel syndrome, illetis, the gastro* in 1994 said I needed a psychriatrist as he couldn't find anything wrong with me.

Gastro of 10/03 took my medical history on first visit and knew by story he was hearing (within 15 minutes) that I was celiac. Did blood test to confirm diagosis. 10/03 began Gluten free diet.

6) The first four inept gastros - all they did was order stool samples, upper & lower barium GI series, sigmoidoscopies and looked smug about it as if they were doing me a BIG favor just to have an appointment with them.

The first gastro, due to the fact it was the 1970's, accused me of getting a barium enema just so that the doctor could prescribe drugs to me. He said "You druggies are all the same. All you are looking for is drugs (prescription). " I guess after having diahrrea for 4 mos straight & immediately losing 30 lbs. I looked awful. My reply to him was, "What kind of a nut would beg for a barium enema? I don't want any prescriptions, I just want to know what's wrong with me." This was at a U.S. Veterans Hospital in my home state. Needless to say, they never gave me a diagnosis . From what I recall, they were the reason why I needed to go to a private gastro on my own. ( I am a Vietnam Veteran & could use the Vet's hospital/clinic at that time without charge).

Don't fret, because I learned that event the so-called BEST* medical group in my home state couldn't diagnosis celiac disease. This is the dr. who said I needed mental help for my intestinal problem!!

My current gastro who diagnosed celiac disease wants to do an endoscopy but I am putting it off until I feel up to it mentally.

7) I can tolerate diary but I take a Lactose pill with the meal just to be on the safe side. I am unable to eat soy based products and am hoping that this is just temporary. I could not digest Amaranth. I cannot digest fresh or canned fruits and vegetables, haven't been able since I first got sick. Dr. says maybe I will in future.. who knows. I cannot tolerate herbs or spices or garlic or onion either since I first got sick.

8) Other type of disesases: multiple hernias due to losing muscle mass an indirect result ? of my malabsorption disease celiac sprue.

Restless leg syndrome - I have no idea if this was brought on by celiac sprue. Severe depression to the point of not wanting to live anymore. Gastro says that this could be due to celiac sprue. I cannot take any anti-depressants due to side effects, so I live and try to get by depressed. The celiac spruce diagnosis has pushed me over the edge.

9) Length of time between onset & diagnosis: 25 unnecessary years

10) My sister may have celiac, but she refuses to get blood test due to the cost. She has stomach/intestinal complaints: gas, indigestion, etc. and never seems to gain weight no matter how many desserts she eats. I believe she too has malapsorption and celiac. No other relatives report this type of distress.

[Guest gillian502]

1) female

2) white, with background of lebanese and Irish

3) sick at 28, diagnosed at 30

4) 5'7", 138 when I became ill, then went down to 116, after diet back up to 136

5) doctor diagnosed in summer 2003

6) bloodwork, endoscopy w/biopsy, stool tests, floroscopy, upper Gi series.

7) I have chosen to exclude dairy although I have no allergy to it

8) I have a heart condition called Postural Orthostatic Tachycardia Syndrome, which means my heart is structurally normal but beats abnormally fast. Also mild osteopenia, severe sacroiliac joint pain, dizziness, migraines, eczema.

9) sick for 15 months before diagnosis, although I had some symptoms well before that.

10) there is no Celiac in my family and no bowel diseases or autoimmune diseases of any kind. But I guess this must've come from somewhere!

[Wish]

Hi Kristin! Good luck with the biology project...I'm a college student and my biology courses are some of my favorites! To answer your questions:

1) female

2) Caucasian

3) first recognized that I was sick right after 19th birthday, diagnosed shortly before 20th birthday

4) would rather not get into the specifics--has dropped significantly

5) doctor-diagnosed, 2003

6) endoscope biopsy, bloodwork (IgA serum tissue transglutaminase)

7) according to my doctor, just gluten...personally, I'm suspicious of casein (protein found in milk) as well

8) anorexia nervosa, depression

9) roughly 11 months

10) This is difficult to answer b/c there are people on both sides of my family, male and female, who have symptoms consistant with celiac disease, but refuse to be tested! However, the following diagnoses have been made:

[Wish]

Sorry...technical glitch :-). Anyway, as I was saying, the following diagnoses have been made:

mother--rheumatoid arthritis, irritable bowel syndrome

father--GERD

maternal grandfather--GERD

maternal grandmother--anemia, osteoporosis

female cousin--GERD

male second cousin--autism-I mention this only b/c research indicates that many autistic children do better on a gluten-free, casein-free diet

I hope this helps Best of luck with the project!

[SadiesMomma]

I am a Female (21 years old)

I am mainly

[LisaP]

I hope you are still collecting data....

1. Female.

2. English, German, and Irish.

3. I was 35 when symptoms got bad and 35 when diagnosed....but it took about 6

months b/c both the doc and I did not take it very seriously. I thought I was

just getting older and needed more fiber....wrong!

4. 5'4" before and have not been measured again. I was 117 for years and did

not gain; no matter how much I ate. I got down to 106 right as I went gluten-free.

5. Doctor, 2004

6. Upper GI, Endoscopy, IGA blood test, as well as a small bowel surgical biopsy

since part of small bowel was inflammed and thick. This was done to rule out

any other ailments. Good news was that only celiac disease was found.

7. Once gluten-free, I can tolerate anything....before, I had trouble with caffeine, dairy,

spicy, and acidic foods. The way I see it, going gluten-free opened up more foods to

me than it took away.

8. Clostrodium Difficle (yucky!)

9. I did not really think I was sick...nothing really hurt. Just diarhra and swollen

ankles, and a grumbling gut late in the day and night. But, I had typical signs

after the birth of my first child in 1997. Everything cleared up during my 2nd

pregnancy, and then the mild symptoms returned until August of 2003...when

things seemed to intensify.

10.Only relative with an gluten issues is an aunt on my mother's side. She is

gluten intolerant. My maturnal grandmother had a list of ailments and as I

research celiac disease, I think that may have been one of the big issues that was never

diagnosed.

Hope this helped. Come back and tell us your findings and if you make an "A".

[cmp0402]

1. Female

2. Caucasian/Northern European

3. 40 diagnosed at age 41

4. Pre dx: 5'81/2' 146lbs post Dx: 5'81/2' 143 lbs.

5. Doctor diagnosed 1993

6. Upper and Lower GI series - normal

Large and small intestine biopsies

7. No

8. No

9. It was about 15 months. When I first became ill the symptoms subsided after two months, and I regained the weight I had lost. The second episode began about 10 months later. My daughter's pediatrician recognized the symptom pattern. I had previously been dx as having irritable bowel while in graduate school, but the symptoms came and went on a very intermittent basis.

10. Just recently my 17 year old son was diagnosed as a celiac. No other family member, that we know of, has the disease.

[Lorrie]

I sure hope you get a great grade and it makes people more aware of thisdisease.

1.female

2. white, irish, scandinavian, scotish

3. I struggled with being a sickly child. Always very skinny and anemic. But it really came to rear it's ugly head when I had my second child. at age 25. Not diagnosed until I hit 48.

4. 5'8" 125 dropping down to 5'7" and 105 lbs.

5. Dr. diagnosed but not until I really investigated why I was always anemic and then developed osteoporosis too.

6. endoscopy biopsy and blood work.

7. just gluten, thank you Lord...

8.osteoporoses, joint pain, occasional acne break outs.

9. over 25 years

10. Mom has colitis and IBS is now 89 and might have Celiac but not up to the test. Dad died of complications with hernia but always had stomach trouble and I think might of had the Celiac. Sister has all symptoms but dosen't want to know. She has osteoporosis and my nephew is also Downs.

[nickra]

1. female

2. white - english

3. have been ill since age 13 on and off

4. have only just been diagnosed - so nothing to compare

5. doctor-diagnosed 2004

6. have had positive blood test and am waiting for biopsy

7. still eating gluten until biopsy test comes through

8. have previously been diagnosed with IBS - but could have been celiac disease in disguise!

9. 2-3 years

10. as far as i am aware none of my family have celiac disease (although this may change as i am newly diagnosed and my family dont know about the condition.)

all the best with your studies

Nickra

[jen-schall]

I'm guessing, since it's May, it's too late to take the survey (hey, I'm new-ish here!) but I'd be super-interested in seeing your results!

thanks!