Comprehensive Questionare-1 Of 2

red345 · January 31, 2005

If it's ok with you folks, I am going to divide this series of questions into 2 batches. This first batch, listed below, will require precise answers from anyone choosing to participate. Though I do include a few T or F's on this one, the 2nd batch I intend to post later this week will be a round of simple "Yes" or "No" questions, so this is the one that may be a bit more difficult.

I am looking for many different patterns when it comes to some of the questions that I will be asking you. So, while some of these may appear highly irrelevant to you at the time, please do understand that I am a believer that a pre-existing endocrine imbalance may be in place for a large number of those experiencing complications, and that is why a few of these may appear irrelevant to the naked eye in regards to any association they may have to what is known about Celiac Disease.

A few others will appear to be highly irrelevant to the issue at hand. In those cases, I will admit up front that they probably are. Yet, if we've come this far with this, I just don't want to leave any possibility out of the loop whatsoever, as ridiculous as some of the questions may seem, and quite likely are. So if I happen to ask about a household plant along the way, please just be patient with me~.

If there are any questions that you would feel uncomfortable answering, just skip right past it. I fully understand those issues, and I'm certainly not demanding this must be done my way. Everything is up to you, personally.

My first question will be one that asks you about medication, one of the most critical relationships I believe there may be to Celiac. Now I fully understand that some of you may be hesitant to list an anti-depressant or a birth control drug here. If you are taking one of these medications (And I am in no way implying there is any direct link between Celiac and these drugs, I only highlight them because of the issue I am addressing here), please understand that I, nor anyone else here has any entitlement to judge anyone for taking such medication. We live in a day and age when anti-depressants are the most commonly prescribed medications on the market, afterall, so if you're not taking one, your neighbor certainly is, you know?

If anyone would have justification for being on one of them it would be you poor things, afterall, so please do not have any embarrassment about listing it if you are taking one. As for birth control pills, many, if not the majority of those women taking these medications do so for pain, etc. My point simply is there is not any medication that anyone needs to be embarrassed about listing, especially when we are dealing with a much larger issue here to begin with.

It is up to you whether or not you will find the time to go through this. Please understand that you have my assurances that each and every lead will be followed to the fullest extent. I doubt you will ever again come across a two part survey that will be this detailed, so this is everyone's chance to really try to go after some of the more precise detail. For any of those that may take the time to go through this, I can't ever thank you enough for your cooperation. We're going to get you better-that was my promise than, as it is now. You just hang in there now and be proud of what you have done for yourself thus far. Thanks again to everyone.

Do understand this information will never be published, even referenced without every participant's approval, in the event any sort of a major pattern would show up. I hope everyone understands by now that I am doing this out of my own townhome, and nobody is standing beside me, so it's just between us. And no, I am not going to take this and go write a book, either~. I was only trying to stir up the pot with all of that dialogue back than. K, here it is. Thanks again.

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#1) Please list any and all medications that you were taking at the time you can trace back to being the onset of your Celiac-related symptoms. Please include all vitamins and OTC (Tylenol, etc) drugs/supplements, too. If possible, please be specific about brand name and dose with each medication (Water pill='s Maxzide 25 mg, multi vitamin ='s Centrum one a day, etc), as well as how long you were taking the medication up to the exact point of when you began to experience your symptoms. If you cannot remember a drug's name, just simply try to list the type of drug you believe it was, if possible. Precise detail here is key, but don't worry about that if you cannot fully account for what you may have been taking, on the same hand.

#2)Have these medications/vitamins changed since that time you can trace back as being the onset of your Celiac symptoms? Meaning, if you were taking Tylenol at the time you were diagnosed, but you do not take Tylenol any longer, list that here. In other words, if you began taking Tylenol in 91, noticed your first symptoms that were consistent with Celiac in 95, than stopped taking the drug in 98, try to do all you can to point these issues out here, if possible. If you don't, I will assume that any med/supplement that isn't listed under #2 you are still taking to the day. Also, please indicate how long it has been that you've been taking any and all of your current medications/otc's.

(Here is what I would be looking for in #1 and #2-

The first possible signs of Celiac came on in 1997, though I was diagnosed in 2000.

In 1995 I began taking a Centrum every day.

In 1996 I started taking Tylenol for an aching back, 2 capsules daily.

In 1997 I was prescribed Atenolol, 50 mg, and Maxzide, 25mg.

In 1999 I stopped taking Atenolol, and was prescribed Cardiozam instead, 10mg, etc, at which time I stopped taking Maxzide, too.

In 1999 I switched from Centrum to One a Day.

In 2000 I started to take Natrol brand Omega 3, Alpha Lipoic Acid, Green Tea, and Selenium-etc, etc

I'm being a major pain in the $%^ here, I know that. But again, if there is any correlation to speak of between the onset of Celiac symptoms and certain medications (And I'm not saying there is, even, but if..), this is going to be your one chance as a group to either prove or discount such theory. You don't have to include 1 or 2 month trials of every single thing that you've been on, but anything you have taken for over 6 months, I would that to be relevant within this particular scope of things, that's just the fact.

#3) Besides those foods containing gluten, what other food sources are you suspicious of? Try to list them all, and be specific. For those of you that have had RAST or ELISA panels run on multiple foods, share all of that, if willing. Try to be as specific as possible within each food class. If you can tolerate butter but not margerine, indicate that as a sidenote. If apples make you sick, but not oranges, highlight that. If you can tolerate cottage cheese, but not yogurt, please make note of that, too. You get the picture.

Example-nuts (Peanuts and Cashews), oranges, grapes, ketchup, dairy (margarine and cottage cheese, mainly).

#4) Region of the country or state where you live right now. Citizens of Canada list where you are, too, please. Is this where you living at the time of the onset of your symptoms? If not, please indicate where you were living than.

#5) Your age and the year (Roughly, if need be) you associate back to the onset of your symptoms.If you have ever read for low iron and/or any form of anemia, please specify that here, too.

#6)Have you experienced abnormal pain or fatigue that seems to correlate with the onset of your symptoms? If so, did this begin before or after you removed gluten from the diet? Location of pain, too (Abdominal, knees, joints-or-systematic in nature).

#7)How many glasses of water per day do you drink, roughly?

#8)List any and all related conditions that correlate with your Celiac. If you have Type 2 Diabetes, and/or Fibromyalgia, and/or Lupus, list them all here, if possible. Include any that you suspect you may have, but don't get carried away here, either, if you know what I mean.

Also, please include any past health matters that may of interest. You don't have to include a "Cold in 1987," in other words, but if you had Peptic Ulcers at some point, please list that, and at what point you had that. Same goes for Mono, Rheumatic Fever, Gallstones-I'm sure you get the picture.

Example-Had Mono as a teenager, Peptic Ulcers in 1988, etc.

#9)List any all of the current health symptoms you are currently experiencing. Pain? Tingling in the face? Cold Hands? Chills? Difficulty swallowing? Labored breathing? Exhaustion/fatigue? Sleeping problems? Female pains? Repeated infection? Dry mouth/dehydration?-Everything, if possible. How long have you been experiencing each individual symptom? Have they improved, or have they only come on since removing gluten sources from the diet?

#10)Vaccination history. Do you go in for flu shots? When did you start having them? Do you have them annually? Did you begin having them prior to or after the that period you trace back as being the onset of your Celiac symptoms? Try to think of all of them you had within a ten year window of being diagnosed. Do you have any other types of shots on an ongoing basis (Allergies, some diabetics-insulin, B12, etc). Are you between the ages of 25-35? If so, your childhood round of vaccine took place in the 70's, so try to indicate those specifics, too, if possible.

#11)List any medical tests, other than Endoscopy, that have returned abnormal findings that would be of relevance here. We have read that some Celiac patients show elevated Eosinophils, for instance. Do you know if this has shown up in your case? Any abnormalities in the other differentials? Have you had antibody testing (Immunoglobulins)? What was the result? What about a blood/fungal culture? Have you ever been given a tear test, or tested for the SSA antibody? Please include hormonal tests that you have had. Have your Estrogens/Testosterone/Progesterone been abnormally low? Are they high? Is one low, the others normal? If so, which one? As much as I can get out of you about everything here the better, in other words.

#12)Have you ever been given a stool culture by your doctor? If so, were you normal? Were parasites, bacteria, or blood detected?

#13) Have you had an Endoscopy? Is that how you were confirmed, or have you based your diagnosis on your own suspicions, a blood test, or the opinions of a company like Enterolabs, etc.?

#14) I always stay away from gluten, true or false. If not, are there weekly cheats, one a month, or can we say that we are 100% gluten-free.

#15)I have taken immunosupressive (Prednizone/Hydrocortizone, etc) drugs, or have used antibiotics heavily in the past. True or false.

#16)I probably drank a little more than I should have at one point in my life, but I have quit. True or false? Do you still drink? If so, how many drinks per day?

#17)I have always craved carbs/chocolate/sugar. True or false.

#18)I feel dehydrated often, and/or seem to be thirsty much of the time. True or false.

#19)I have the urge to urinate frequently. True or false.

#20)I moved into a home that was less than 5 years old right about the time I began to experience my Celiac symptoms. True or false.

Or do you live in an older home? Have you ever had your house checked for molds?

#21)I have a real plant or a real tree in my home, true or false. If so, what kind of plant/tree is it?

#22)I am lacking in good, restful sleep, true or false. If so, when do you normally go to bed? When do you wake up? Regardless of whether or not you feel you may have sleeping problems, please include your normal "Timeclock hours," if possible.

#23)If I get stressed too much, I tend to develop panic attacks. It's not really a panic attack, but if I get stressed enough it's as if I get confused, feel unfamiliar with my surroundings. I develop irregular heartbeats, but they go away after 15-20 minutes. My vision sometimes gets extra "Bright" when this happens. Sometimes I will get headaches when this happens, sometimes not. Sometimes this will happen during an orgasm, too. -Is anything true here? All of it? Part of it? Or nothing here.

#24)My Celiac seems to have developed during Menopause, true or false. -Any males diagnosed over the age of 60 would have to say yes here, btw.

#25)Were there any major life stresses that took place shortly before the onset of your symptoms? (Kids moving away, retirement, graduating from hs or college, divorced/caught my husband with another woman, clinical depression/anxiety, job change, illness in family, etc). If so, no need to indicate what actually happened, just answer yes or no if you want to.

#26)What are your most prominent Celiac-related symptoms? No need to go into a lengthy description, just indicate whether or not your symptom base is "Agressive" or is more "Dorment/hidden."

#27)When I get sick and have to use the restroom, it usually occurs a couple of hours after I eat. Or, do such attacks come on for no apparent reason. Is there a distinguishable time table that seems to be involved with your attacks, in other words. For those of you that go through your most severe bouts in the morning, does the urge come on immediately after waking? Or does the attack occur usually after you have eaten breakfast, etc.

#28)Your diet at the time of the onset of your symptoms. Were you a dognut/coffee breakfast person, or more of a cereal/orange juice/toast/coffee/banana breakfast eater. Did you even it breakfast? Were you eating three meals per day? Were you a big junk food eater, a snacker? 6 fruits and veges or more per day, or more like one or two? Be as descriptive with your former routine as possible. How has that changed today? Is it any different? Besides refraining from gluten, is there anything else that you are you doing differently now in terms of that schedule and the foods you eat.

#29)My complexion has always been more on the pale/pasty side, t or f. Do you have naturally blonde or red hair? Do you have redness to the cheeks, a flushed look? Is this consistent, or does the flushing only occur at different points throughout the day?

#30)I have a family member(S) with Celiac Sprue, too, t or f. If so, list relation to you.

#31)I have lots of autoimmunity running in my family, true or false. If so, list the various conditions of each person afflicted and their relation to you.

#32)I used Alpha Hydroxy lotions or Kinerase skin creams prior to the onset of my symptoms, true or false. Were you wearing make up and/or using other cosmetics regularily? If so, list it all-everything, including brand names, if possible (Moisturizer='s Oil of Olay true affects, or Lancome Renergie. I know what they are, I can get jiggy wit' it~). Just do the best you can to come up with as much of your previous arsenol as possible (Only interested in what you were using for the year prior to the onset of symptoms, in other words).

#33)I usually have a "Tightness" in the chest-not at the heart, per say, but right above it. T or F

#34)I owned a pet at some point within the previous 10 years of the onset of my symptoms, T or F.

#35)I believe that I get enough fiber in my diet, t or f.

#36)I am a confident, talkative, very outgoing individual, t or f.

#37)I have always kind of been a worry wart, t or f.

#38)I tend to be shy around people, t or f.

#39)I have noticed major personality changes since the time I was first recognizing my symptoms, t or f.

#40)One more time, just to be sure~ I was consuming caffeine at the time my symptoms came on, t or f. Was it excessive?

#41)We had new carpeting installed, or our carpets were cleaned at about the time I began to experience my symptoms, t or f.

#42)What best describes your home heating method-electric furnace, fireplace/wood, electric heaters, or gas furnace.

#43)At the time your symptoms came on, in that home-We had wood flooring where there was not carpet in our home, t or f. If false, what type of flooring material covers the floor. Linoleum? Pressed wood?

#44)Typical detergants/laundry regime-Chlorox, All, and Bounty? Has that changed now from what you were using then?

#45)I get stressed quite easily these days, t or f.

#46)I have used probiotics, and they have been/were pretty effective for me, tt/ff/tf/

#47)I am

Righthanded (A)

Lefthanded (

#48)I have itchy skin which seems to have come about since all of this started, T or F

#49)I experience sounds of upper GI distress- indigestion/gurgling- quite often, t or f. If True, do you suspect GERD?

#50A)I have always been quite skinny, T or F.

#50B)I have gained weight since going gluten free, T or F.

celiac3270 · January 31, 2005

#1) Just for background info. for my answers, I first developed gastric symptoms when I was 6...I'm now 14. I started taking those chewable Flinstone vitamins once daily around age four, I think. I took Prilosec OTC for about three months (it says on the package only to do it for two weeks, but this was on the advice of my doctor). I started taking this when I was thirteen and having been on the gluten-free diet for a few months. Oh, I almost forgot, when I was 11, I went to a homeopathic doctor to try to resolve my symptoms. It helped slightly, but I've also heard that the onset puberty can make the symptoms stop temporarily. To be really specific, I had sporadically taken other things....Tylenol when I had headaches, Robitussin if I had a really bad cough, etc., up until the time of my diagnosis, but obviously, I wasn't taking these at all regularly . Just trying to provide as much detail as possible.

#2) Changed to Tylenol Extra-Strength aspirin (swallow kind) when diagnosed--up until then would take the kids one when I got a headache. I changed vitamins at the time of my diagnosis as well. That's about it.

#3) When I was younger, I ate farina (w/ the Quaker oats) all the time--for breakfast, sometimes for dinner--I loved the stuff. My parents/babysitter made it for me with milk. However, every time I ate it, I'd suddenly feel nauseaous and a little sick, then I'd have to run to the bathroom and vomit, then it would be over. This happened almost every day I ate it, but only at night, and I don't think this happened with other foods. Sure, oats are contaminated, but I ate other foods that contained just as much gluten and didn't have that reaction. My pediatrician at the time said it might be hot milk or something, then said it could be allergies, but you shouldn't test--they're too expensive and not worth it and all that stuff. That's the only really suspicious thing--not because of the GLUTEN, but because it made me sick in a strange way that the other foods didn't. Around this time I continued to grow upwards, but weight gain slowed. I think it's strange that I got sick with this food and not others.

#4) Lived in New York City, NY and still do.

#5) I think, when I was about six years old, which would be in 1997.

#6) Abdominal pain was a major symptom--pain due to gas. No joint pain or anything else like that.

#7) Very few. It's interesting that you ask that, actually. I used to drink a ton of water and then, in the past few years, I slowed considerably. I don't drink with breakfast, don't drink with lunch, sometimes don't drink with dinner, and drink only a tiny bit during the day. A really poor amount of water--maybe a glass or two at most. I know I should improve that, cause every now and then I get headaches and then I drink a lot of water and stop when the pain goes away.

#8) None...no allergies, nor any other conditions (that I am aware of)....oh, slightly high cholesterol, discovered while running tests to try to diagnose my problem. Not a big deal, according to the doctor and the first thing is to get my health on track (get rid of my symptoms).

#9) I wouldn't have put it down as a health condition, but seeing that you gave it as an example, my hands are nearly always cold. No other issues, and despite my limited water drinking, my mouth is not dry.

#10) No flu shots, and I was vaccinated with....everything they vaccinated kids with starting in '91. ...whatever those shots may be for.

#11) I have no idea what half those words mean. I tested positive for celiac in bloodwork done, but that's all, I think. No problems with hormones and such.

#12) About...8 months ago, when I was going to a GI who diagnosed me, but was pretty clueless about the recovery period, I had some stool test done. He did a....rectal examination and found that I had loose stools and he wanted to make sure it wasn't some bacteria or parasite or something. It wasn't.

#13) Yes-- positive bloodwork and positive endoscopy.

#14) True--I am a paranoid celiac and I haven't consumed any gluten purposely. I had an endo. a few months ago, which verified that my villi had healed completely.

#15) False--no prednizone or the other one--just asked my mom if I had...lol

#16) Nope-- I don't drink since I'm 14

#17) YES, YES, YES. I ate so much bread/bagels/pasta/other gluteny bready products before diagnosis. I have strong cravings for chocolate and sugar .

#18) False--though I probably should feel dehydrated.

#19) False--no more that the average person, I think.

#20) False--not a new home (apartment, in my case) and it wasn't very old, either.

#21) Not at time of diagnosis, but my brother loves plants--he is growing an avocado tree, tomatoes, corn, etc....all on our windowsill

#22) False--I go to bed around 10 PM and get up around 6:45 AM

#23) Nothing

#24) No

#25) No

#26) Aggressive--I've listed them on here often enough

#27) There's a sort of pattern. It's often after dinner that I start to feel sick, then by 9:00 or 10:00 PM, I star to feel really bad. The other way it often comes on is in a way it never used to. I wake up, feel a little nauseated, eat breakfast and am fine, then by midday feel terrible...but I know it's coming when I feel bad in the morning, even though it takes hours to accelerate to its worst.

#28) Used to eat a very large breakfast consisting of a large bagel, or sometimes a bagel and a half, and usually an apple or banana. Lunch varied--at home it would be a hotdog on a bun or macaroni and cheese or something. At school it varied a lot: pizza, rice, tacos, fries, burgers, pasta, chicken, etc. Dinner....largely gluten-free. If it wasn't ravioli or lasagna or something, it was usually potatoes, a meat (steak, pork, chicken, etc.) and a vegetable, which, I admit, was pushed around my plate more often than eaten. I'd often have another piece of fruit later in the evening (having had grapes, a banana, an orange, canned peaches, or another apple at lunch) and various snacks throughout the day including potato chips, cookies, etc.

#29) True--my mom says I was extremely pale and I looked a little emaciated before starting the diet. My color's a little better, but still slightly pale. No blonde or red hair

#30) False

#31) False

#32) False

#33) False

#34) Well, sorta true. I wasn't alive 10 years before developing symptoms, but from the day I was brought home from the hospital, there was a dog in the house (Norwich terrier)

#35) True--apples

#36) Confident--not talkative or outgoing, though

#37) True

#38) True

#39) True -- not as moody, not as depressed, not as much of a worry wart.

#40) Nope--not at age 6....it's difficult, cause I'm not really sure if my celiac started at age 6 or around age 11, when I started getting symptoms similar to what I get today. Not any at age six, a minimal amount, if any, at age 11.

#41) Maybe....I don't really remember. Not cleaning, but maybe new carpets.

#43) A mix of flooring....wall-to-wall carpeting in living room, wood in hallways and bedrooms, and tileish thing in kitchen/dining room at time of diagnosis. I've moved since and every room is hardwood except for bathroom and kitchen (tile).

#44) Chlorox bleach and don't know what detergent....detergent might have changed.

#45) True

#46) FF

#47) Righthanded

#48) False

#49) True--gurgling when I'm feeling sick. Don't even know what GERD is.

#50) True--skinny. True--gained weight, but I'm a teenager, so I'm supposed to be gaining a lot of weight and growing...I'm not where I want to be in weight.

There are a lot of questions, so I know it wouldn't be practical, but I'd be fascinated to know what some of my answers mean in terms of health--and how things such as wood v. rugs affect my health. Hope this helps with your research.

-celiac3270

darlindeb25 · January 31, 2005

geesh louise----red---i will try to answer your questions--very lengthy--i will have to leave and come back too---i know this important for you, so here goes:

1. i am not sure when i 1st developed symptoms--i have always had a very touchy tummy, even as a small child i would get carsick, still do if i am not driving, i do know that things got worse after having my 1st baby in 74---i did take tylenol for headaches, pepto bismo for tummy, tums sometimes, maalox for heartburn, kind of a you name it i took it over the counter looking for help, but i cant tell you how much, or when-----i started taking xanax in 82, was 1-4x's a day but couldnt cope on that much, so then as needed for panic---graduated to paxil maybe in 91--was started on 10 mg which by 2000 was 40 mg----after 3 months of gluten-free in 2000 i weaned myself off paxil-------i did take birth control after the birth of a son in 81, but got flu like symptoms and also became pregnant while on them in 82

2. i dont take as much tylenol now that i am on the island--the ocean air seems to have doe wonders for me or maybe just getting away from the stress in michigan--i do take a daily vitamin--mature made woman +50---nothing for tummy--just tylenol sometimes for pain and tylenol sinus

3. foods i am suspicious of include soy proteins, lecithin seems to not bother me, very soy limited and corn limited--can eat corn as a veggie, but cant tolerate corn flour

4. i live on long island new york now, just moved here from michigan where i was born and raised--lived in the same county my whole life

5. i feel that i may have had celiacs all my life--the worst symptoms started in 80

6. i had diarrhea all the time before gluten-free--my tummy at times felt like a huge black and blue--terrible cramping at times, couldnt leave the house--i developed panic attacks, agoraphobia and anticipatory aniexty---have much muscle aches and joint pain---has gotten better since going gluten-free

7. not enough water, somedays 3 glasses some 1

8. i have raynauds disease, neuropathy--------and yes, i did have mono as a teenager

9. i do have knee pain quite often, but did injure both of them at separate times--3 yrs ago for left, 1 yr ago for right--cold hands often, sleeping probs sometimes, usually stress related

10. no flu shots

11. no medical tests as of late

12. stool culture back in late 70's

13. no

14. t

15. f

16. f

17. t

18. t

19. t when i follow through on #18

20. nothing to do with my homes

21. have had

22. this one is hard to answer--in michigan i was going to bed at midnight and getting up at 5 everyday and many nights i wasnt sleeping at all--never enough sleep, sometimes i would nap--i was so stressed out in michigan----here in N.Y. i sometimes am in bed by 9 or 10 and sleep straight through to 5 work days and 6 on weekends--very few sleepless nights and my stress is next to gone here

23. true i do get panic attacks, but false when you say it isnt really panic, cause it is--unfamiliar surroundings can be very hard for a person who may panic

24. f

25. very definate onset time was in 81 when my sister loast her 1st baby and i was pregnant with my 4th and feeling so guilty

26. aggressive

27. all of the above at different times

28. was a sandwich eater, noodles, some veggies and hardly no fruit

29. brunette with red highlights--mother is true redhead

30. i have 2 immediate fam members with celiacs too--father and sister

31. father has type 2 diabetes

32. f

33. f

34. t

35. f

36. t

37. t

38. t & f neutrel on this one

39. t

40. t

41. f

42. gas

43. f carpets and linoleum

44. no change

45. t but better then 1 month ago

46. f

47. righthanded

48. t

49. f

50a. f 50b. f

dont know why red, but here you are-----deb

plantime · January 31, 2005

I don't care how important this is for your research! I give my doctor this info, not some stranger on a public message board!

Thomas · January 31, 2005

What exactly is this for?

MySuicidalTurtle · January 31, 2005

Red345, I think you should post your answers, too.

strack2004 · January 31, 2005

Hi, Red. I have not yet attempted to answer your questions, since I still haven't been diagnosed with celiac. I have been gluten free for 6 months now . Feel I have more energy and sleep sounder except for bathroom breaks, go right back to sleep though which I didn't used to do. How do I go back some 76 years to find the answers to some of these things. Would you like me to try, or would it be of no help since there is no diagnosis and no real help with digestive problems? Will check back to see what you think. Ruth

strack2004 · January 31, 2005

Hi, Red. I have not yet attempted to answer your questions, since I still haven't been diagnosed with celiac. I have been gluten free for 6 months now . Feel I have more energy and sleep sounder except for bathroom breaks, go right back to sleep though which I didn't used to do. How do I go back some 76 years to find the answers to some of these things. Would you like me to try, or would it be of no help since there is no diagnosis and no real help with digestive problems? Will check back to see what you think. Ruth

red345 · February 1, 2005

In response to your suggestion (And you are right to suggest such) turtle, I will do that here. In my own case, all three blood tests read negative for Celiac. Last June, I demanded an Endoscopy just to be sure, and there was nothing to be found. Therefore, it has been certified in my own case that I do not have Celiac Disease. According to the available literature, however, depending on source, there is almost no room to conclude that I should not have Celiac Sprue as a longstanding, juvenile Type 1 Diabetic.

So what gives? Well, it will take them upwards of 25 years to figure this out, but I know now the only reason I don't have "Celiac Disease" is because there may only be a total of a dozen other Type 1 diabetics of my variety in the world with an A1C under 5%, which is where I stand currently (The Diabetes Association recommends that any diabetic try to stay below 7%-I would guess the average Type 1 Diabetic comes in at around 8%, so I've been pretty lucky w/ things).

But what I will do, Turtle, is answer for my family member, w/ a brief explanation as to why the question is being asked. By establishing this pattern of rationale upfront, I must acknowledge that doing so will essentially "Ruin" this poll to a degree. To Deb, celiac3270, and Strack (Bless you for your willingness, Strack-that's just fine), I thank you very much for your participation. Let's see if anything comes of it now.

K Turtle, here we go-

#1)1999-Prescribed Maxzide for fluid retention/borderline blood pressure condition, 25mg. Was prescribed Atenolol, 50mg, at the same time.

#2)Late 2001-Prescribed Metformin, 50mg, following diagnosis of Type 2 Diabetes and Celiac Sprue. Begin's Nature's Way supplementation, including Multi for Women 50+, Folic Acid, Cal/Mag, Omega 3, Alpha Lipoic Acid, Q10, Potassium, 99mg

2003/2004, Winter/Spring-Placed On Crestor, 20mg. Two different 30 day periods, the first resulting in illness and inflated liver enzymes, improves after medication is stopped. Tries another round later in the summer, this time tests show kidney impairment diagnosed as "Complication of Diabetes." I advise her to stop the medication. Repeat Metabolic/Creatine panel done the following month reveals perfect metabolic function.

Direct Culprit of elevated liver enzymes/"Kidney Damage caused by Diabetes"-Crestor. Panels performed two weeks ago from this day reveal perfect metabolic and liver functions. Doctor's request was to continue Crestor and add ACE inhibitor at that time.

2004, Spring-Begins Garden of Life Enzyme Therapy. Stops taking medication in summer due to unexplained health concerns.

2004, Summer-Begins taking Culturelle Probiotic (Acidophillus) for a three month period. Begins GNC Milk Thistle, Natrol Green Tea/Grapeseed/Aloe Vera formulas. Stops taking after three months. Switches from Metformin to Glipizide due to health concerns. Later switched to Amayrl, 1mg, now off of medication.

Begins Natrol Beta Glucan, 20mg, supplementation- takes for three months, than stops.

2004, Fall-Begins Natrol Beta Glucan, 20mg Supplementation once again. GNC Glutamine, Carnitine, and Glutathione supplementation added. Takes for a three month period, than quits.

Garden of Life Fungal Defense formula, one bottle only. Begins taking Enzymatic Therapy IP-6, stops after two months.

Begins Nature's Way Olive Leaf Extract and Kyolic Garlic therapy, stops taking in December because of rapid improvements to health.

November-withdraws from Atenolol completely following month long withdrawal, Maxzide reduced to 1/2 25mg pill.

(Reason for questions-to access potential pre, post medication involvement with secondary complications.)

18-24 month window between the onset of symptoms and the addition of two medications, in her case.

Improvement begins toward the later part of 2004. Potential links w/ medication-Addition of Beta Glucan/Olive Leaf Therapy, Atenolol/Metformin/Crestor removal, in this individual case. )

#3)Gluten, Wheat, Barley, Milk, Soy, Almonds, Pepper.

#4)MN (To judge whether the individual is located in Mississippi or Ohio river valleys, where Giardia have been detected in water supplies).

#5)Anemia in 1994 due to cycle irregularity-immediately improves with Iron therapy, never has returned. The onset of symptoms appeared in 1999, one month prior to being officially diagnosed.

#6)Slight abd'l pain and mild systematic pain at time of diagnosis- involving lower back and front thigh regions (Fibromyalgia, supposedly). Systematic pain began 9-12 months prior to the onset of Celiac Related symptoms. Remained at that level until full removal of gluten in 2003. Upon removing all sources of gluten, her pain intensified to such a degree that it required surgery to treat Spinal Stenosis in 2004. Pain is basically gone today.

#7)1 or 2 at the time, now 5-7 per day over the last couple of months.

#8)Peptic Ulcers in Jan, 2004. Fully healed upon repeat endoscopy.

#9)Some sleep problems remain.

#10)Began receiving annual flu shots in 1998. Pneumonia vaccine in 2001.

#11)I think you've heard it all by now. Many various specialized panels. 24hr urine amino panel revealed high Tyrosine/low Tryptophan. Deficiencies in Alanine, Carnitine, Glutamic Acid, and Glutamine were observed, excess Histadine and Ammonia. Biopsy of Thyroid was benign. CT scan of abdomen was normal. ACTH/Adrenal scan w/ Catecholones reveal adrenal insufficiency caused by previous Prednizone therapy. Outstanding improvement has been noted with Bovine treatment. Echo shows minor valve damage from childhood Rheumatic Fever, no progression for some 25 years. Specialized Adrenal/Sex Hormones panel revealed low levels of Aldosterone, Pregnenolone, DHEA, high Androsterone, low Cortisol/Cortizone. All others were relatively normal, including catecholones. Blood culture testing, though not definitive in this case, lead to suspicions for the presence of a fungal strain of Blastomyces Dermatidis. Echos and Holter show some prebeats, believed to have been caffeine induced. PET scan was normal. Bone scan was normal. Blood, urine, and hair heavy metal tests have all revealed excess Mercury presence that is slightly high, treatment coming. PCR-Candidiasis normal. Blood lactate (Vein) was 17.4, which is high, regardless of what the established ref range has to say about it, in my opinion (19.8 is max for vein draw). A 5 day antibiotic course w/ sodium bicarbonate was prescribed due to the assumption of Lactobacilli Overgrowth, though it is not directly related to Lactate %. Metabolic ethanol detected in bloodstream (Very small, though slightly suspicious), though she doesn't drink. Blood PH-7.4 (Slightly Alkaline).

Read negative for gliadin/Celiac Sprue on all three tests last month. Awaiting biopsy results of Endoscopy performed last week, though if I'm not mistaken I believe I heard the good doctor say "Everything looks pretty good" along the way. Remember now, he has not been told that she has "Celiac Sprue." My specially designed plot, of sorts~.

#12)Awaiting follow up to ask for consecutive cultures.

#13)--

#14)Would not be in my best interests to answer this one either way.

#15)Typical "Dose per year" antibiotic therapy throughout life. Established pattern of 5-7 day Hydrocortizone "Showers" at different periods throughout 1999-2002 being recommended in this country by a retired doc who should have his *&% sued into the ground.

#16)She's had the equivalent to a 12 pack of beer in her lifetime. There is a connection with beer to all of this, however, all of you better not forget this warning. One fourth of all daily beer consumers in this country will develop Celiac Sprue during, or after they stop drinking. Mark my words.

#17)Yes, most do. Fairly irrelevant question, but is one used to confirm for the presence of basic metabolic imbalance.

#18)Maxzide causes dry mouth/dehydration. The duiratics have been known to cause Type 2 Diabetes. Question also is used to detect for possibility of hormone involvement-anti duiratic hormone and aldosterone, mainly.

#19)Since going on Maxzide, yes. We all only seem to hit the panic buttons when the bowels are affected, but there is a valuable clue to be offered here if one is experiencing both frequent urination and diarrhea together. If one has Diabetes, frequent urination, and loose/watery stools, that by itself essentially invalidates the thought that person would have Celiac Sprue, as it is defined.

#20)They moved into a new home the very year she was diagnosed. They built a lake home within a nine month window of that. Homes that are less than three years old or are older than 50 years are the perfect env't for mold growth. No direct correlation to Celiac, per say, but this would possibly explain for a few of those coughs and stuffy noses. The concept is the same for a few here, but one is merely an inconvience, while the other is a very real condition.

#21)They have a 12 foot tree sitting in their living room, and everytime I go over there my eyes become glazed, and my father's been coughing for two years now. Again, no correlation to Celiac Sprue, just gauging for additional allergies.

#22)Stress causes Celiac Sprue, and there is absolutely nothing harder on the body than sleep deprivation. Believe it or not, I was a pretty normal guy 6 months ago. I've never been tolerant of lazy people or those that lack effort, but that's about it. I'm even laid back by nature, truth be told.

Over the past few months, however, not only have I been bordering on a Schizophrenic-like state~, but nearly a half dozen other major personality shifts have taken place as well. Obsessive compulsive characteristics, poor grammar, lack of focus, an odd rash or two on my arms and pain in some of my glands I have noticed at different times-all due to physical stress on the body because of lack of sleep. Specifically, something called sleep deprivation. Normally I function well anywhere between 4.5-7 hours of sleep per night, but my average over the past four months, in particular, has been 2-3 hours. I've seen first hand what stress, specifically, that of sleep deprivation, can do to a person.

There's a gas station a couple of blocks down the road from me where I've been going to get something to eat on occasion late at night. Working there is a lady that is probably in her late 30's that literally looks like a linebacker. I've never quite seen anything like it before. She's not necessarily overweight, not at all, but she literally looks like a man, neck down. Big muscular shape, what looks to be like a slight beer gut, but a skinny waste-sounds like your typical 35yr old male, doesn't it?

She's worked overnights since she was 17 years old, she tells me. Now if you don't believe me that there's something behind sleep and it's relation to all of the hormones, than you've never been awake past midnight to see some of these people. If sleep is a problem for anyone here, read Baker's "Circadian Prescription." One of the better summaries to be found on that internal timeclock.

#23)No. But if this would accurately describe any of you here, I would suggest you read up a little more about those adrenal glands. I have always found suspicion in the association between some of these prebeats/panic issues and a condition called Pheochromocytoma.

For those of you that do not fit the classic Celiac profile, this is what it will boil down to for you in the end, that of an adrenal burnout issue. Those with an active inflammatory response, those that signal for the presence of hormonal imbalance, I'm not so sure that it should come as a coincidence the entire scope falls between that Pituatory/Thymus/Adrenal connection.

And it shouldn't, because that's what it is. Go back and read about the JFK story, than ignore the debate of "Was it Ulcerative Colitis, Celiac, or Crohn's?" Forget that, look at the bigger picture, and you will see the question really should be, "Why are the adrenals involved in all of these conditions among different people?"

#24)In her case, the argument that lower Estrogens may have played a part has to maintain relevance, I suppose. 2 out of 3 of those with IBS and/or Celiac are women, afterall. That should tell us something, I would think. Again, there are so many different things going on among the members in this forum that you cannot begin to approach it without going on a case by case basis. Do Type 1 Diabetics have such a broad range of symptoms like you people do, as a whole? Sure, depending on the level of control, the complication risks are different. Some may have active autoimmunity present while others do not, but in the larger picture Diabetes is what it is, as is the case with most diseases.

In this forum, however, we have some of you experienced a wide array of relating complications, while others sit back with 100% improvement, even though you have both removed gluten from the diet. Some can't sleep, others sleep too much. Some have abdominal pain, others do not. Some of you act normal, others do not. Some represent symptoms that are highly more characteristic of Sjogren's, where others seem to have no inflammatory responses to speak of. Most of you show some evidence of limited Autonomic Neuropathy, but for the most part we seem to have about 7 specific subclasses all going in different directions. Doesn't add up, that much is clear based on what we have been told about Celiac Sprue.

#25)Retirement.

(Stress ='s adrenal's ='s, under the right env't, inflammation)

#26)She was aggressive for a month before and after being diagnosed. Other than that things have been normal, outside of those periods when she started other new medications.-If there is a concern about Gastroparesis and/or Autonomic Neuropathy here, those that are aggressive would tend to match that type of profile to a better degree. Yet, because we know that many Celiacs have gone decades w/o such complication, it's not a major concern, either, but one that should be of relevance, at least the basic ideology.

#27)I don't know in her case. For those that wake up in the morning and have had problems right off the bat prior to eating, that would almost seem to point to something in addition to, or beyond Celiac.

#28)Toast and coffee person. She's felt much better since changing over to an early morning protein emphasis. She sat for years eating that terrible rice bread that made her every bit as sick as gluten bread ever did. Change to early day protein has been fantastic for her health.

#29)Red flushing periodically, more pale complexion somewhat over the past few years. Flushing was enough of a concern that I ordered a 5-HIAA 24 urine-that and the Catecholones were perfect. Those with a red face, that's almost a given there is something hormonal at work. One guy contends that everyone who cannot get a tan has gluten sensitivity, basically what he tries to say.

#30)No. 8 brothers and sisters-4 of which have had just about every autoimmune condition you could think of. All 8 tested negative, 2 had endoscopies-negative.

#31)Yes. Pretty big clue here.

#32)Pretty bizarre concept behind Kinerase cream, which she used for about two years. I forget the ingrediant, but I ran across a couple of articles having to do with Celiac propaganda that went after three different ingrediants that's in four different brand named skin creams and a lipstick the companies are saying is gluten free,. but that's not the case according to the author, evidently. I have it saved on the computer somewhere so I can put it up later on if need be. She's always been heavy into the makeup/beauty creams, so if some of them here believe this stuff is actually relevant, just felt we better throw it out here.

#33)A "Congestion," "Bulge-like" feeling above the heart may signal Thymus involvement. That CBC blood test you always have is a test of "All the stuff" produced by either the bone marrow or thymus gland, essentially. Your immune system IS your Thymus gland, where the inflammatory response is controlled by the hormones/adrenals, essentially. Lots of evidence to show that vaccinations may "Clog up" this particular gland.

#34)Pets = germs/parasites, in particular. 25% of all human Giardia infections are believed to come from pets. One year prior to her symptoms a family pet passed away. He was an older cocker spaniel that had been experiencing diarrhea terribly at the end. it was probably his time to go, but I always found that a little suspicious, too. The vet said it was related to older age, but he never confirmed that, either. Always the thought process that he may have contracted a parasite and passed it on somehow, etc. doubtful possibility.

#35)Yes she does, and it's vitally important, though you should not over do it, either.

#36)She is more quiet, but confident. Question drives at the basic concepts of IBS more than it does Celiac. Same for #37 and 38.

#37)False, on her part. This has all been my work~.

#38)Yes and no, on her part.

#39)it is my belief this is probably the most distinctive question that one could ever ask a patient with Celiac. In her case, I have not noticed any changes along the way, outside of when she was in her most severe pain, obviously. Pretty important concept here-"Those with Celiac may develop personality changes." That part is acknowledged, but it is never asked why that is the case. Back to the Tryptophan/Tyrosine connection-right here.

#40)10 or more cups per day, than. Now, 7-8.

Caffeine causes dehydration. There is some relevance here, believe it or not. If Maxzide, a duiratic, can cause Type 2 Diabetes, and most Celiacs go onto develop Diabetes....No this is not it, but any and all issues of dehydration need to be looked at, too.

#41)Newer house, so yes. The question is irrelevant to Celiac, or any issue at all to do with any of this. I have taken this overboard, but I'm not going this far, rest assured. Question was asked to gauge the type of response one would give to the question. Because I have given that away now, no need for anyone to answer this .

#42)Same premise as #41, irrelevant to Celiac Sprue.-void, now

#43)Same premise as others, irrelevant to Celiac Sprue-void, now

#44)Irrelevant to Celiac but believe it or not, "Tide" has always provoked a skin rash in me and my siblings. They have no immune issues to speak of, but we all used to get the rash on the legs and back of the arms from anything washed with this specific detergent.

#45)Further investigation into adrenal burnout. In her case, no.

#46)TF. Short term use ok, but otherwise you're playing with fire (Just my opinion).

#47)Believe it or not I came across a paper on this by a guy that says you can judge whether or not one will have autoimmunity by this (Another theory relating to "Psycho Autoimmunity"). If you write with your right hand, but kick with your left leg, you are a prime candidate for autoimmunity, according to this gentleman's opinion. He went so far to do a fairly big study on it I do believe~. Coincidentally, I myself do just that. There was only one other diabetic in my grade school classes during childhood, and he too worked the same way, I remember that. "Bats left, throws right." Sports fans know what that means in baseball. The basis of his formula is that "Internal subconscious conflict/trauma ='s stress ='s adrenal burnout ='s inflammation/potential autoimmunity, etc. Quite Irrelevant I'm sure, but I found it interesting.

#48)A yes here is supportive of Myasthis Gravis, in my view, one of the many autoimmunes w/ incomplete theory, but probably describes what is going on here for some better than just about all the rest.

#49)Indirectly specific to Hydrocholoric Acid imbalance, an acid that works alongside those enzymes you are lacking. Is also a well established symptom of Candidiasis. In her case, this was active for about nine months, though it has improved signifigantly over the past year.

#50)In my opinion, the way the answers to these 2 questions fall tell one whether or not they have been accurately diagnosed. In her case, she has never lost any dramatic kind of weight. I don't think that it's ever really changed. She is probably what would be termed as being very mild obese, and that hasn't changed throughout.

"Ridiculously comprehensive?" Yes. But if everyone here was to share their personal histories with others, those that have been confirmed to have Celiac Sprue, you just never know if something may pop up along the way. 95% chance that nothing would come of it, "But what if?" Given the position so many here find themselves in, my view, as it has always been in life, is that any extra effort is worth the time, regardless of the end result. You always win at some point, and so long that the only standard of judgment is "Extra effort," there are no losses.

red345 · February 1, 2005

"I don't care how important this is for your research! I give my doctor this info, not some stranger on a public message board!"

Yeah, that's just fine, Plan, I understand. You just do me the favor than of checking out this link, all I ask for from you, deal? As you say, I'm not the doctor so I'm certainly not qualified or attempting to diagnose you here with anything whatsoever. Most of the autoimmune conditions involve dehydration to some degree, but you just look at this for me, fair enough? Nothing to panic about, it's just always nice to know about as much as we can with all of this you are going through.

Open Original Shared Link

MySuicidalTurtle · February 1, 2005

Thank you, red345.

I will try to anser the survey later or in a few days when and if I can.

Nadtorious · February 1, 2005

#1) Never took any vitamins as a kid, Tylenol OTC before and up to 6 months following DX (1996? to 2003), every allergy med and antihistamine since a child (including weekly injections as a youngster) (1982-2003), Prevacid 2 years before (DC'd due to worsening of symptoms)(2001) , Pepto all the time before diagnosis (2001-2003), Phillips Milk of Mag (2001-2003).

#2) I haven't popped a single pill in 1.5 years (DX'd for a little over 2 years). I don't trust drug companies.

#3) Eggs are really the only other intolerance. I'm also hypoglycemic, so I stick to a low carb diet, no mushrooms (think I had a yeast prob for a while)

#4) Born in Germany, grew up in Illinois (DX'd there), now live right outside Denver CO

#5) Started showing symptoms at the age of 16 (DH appeared). Stomach issues at 18, anorexia at 19, DX'd celiac sprue at 20.

#6) Extreme fatigue within 20 minutes, tightness in gut, swollen lymph nodes, drop in blood sugar for 2-5 days following reaction, swollen joints, red eyes, irritable, all that jazz.

#7) Uh, 12 maybe (3 full Nalgenes, I think....)

#8) Hypoglycemia, Seasonal allergies that have disappeared since starting gluten-free diet, had mono the year I started showing real GI symptoms, Endometriosis

#9) Like I said, my blood sugar will drop to the 60's when I've had a reaction (normal for me is 90-100). Asthmatic symptoms if glutened. Both since I can remember.

#10) Uh, just my regular childhood vaccines. Whatever those were.

#11) None known.

#12) No

#13) Yes, positive. However, I was DX'd by my GI based on the fact that my period returned 2 weeks after starting gluten-free diet (had been missing for 4 years!)

#14) Oh baby I'm 200% gluten free. No cheating here.

#15) True

#16) True (jeez, I was a normal college student at one point (-. I still do on occasion (potato vodka), but that's maybe twice or 3 times a year.

#17)True

#18) Only if I've been glutened.

#19) Only before being DX'd with hypoglycemia. My blood sugar was out of control!

#20) False, no

#21) I did but I think I killed it.

#22) Go to bed at midnight, wake up at 8 a.m. sharp.

#23) False

#24) False

#25) True

#26) Aggressive Abdominal pain, Aggressive depression, aggressive fatigue-BUT only when glutened (very rare anymore)

#27) My attacks don't come on that strong anymore. If I'm trying something new, sometimes what will happen is I'll eat it for a few days and notice abdominal pain that gets progressively worse. I haven't had a bathroom emeregency in a looonnnggg time. Just abdonminal pain.

#28) I was an everything-I-could-fit-in-my-mouth person! I literally ate everything in sight, but I loved cheese and chocolate. Now I eat fish, meat, veggies, oils. Nothing to screw with my blood sugar. I've learned a bunch about what my body needs over the past couple of years.

#29) I was known as "albino girl" before diagnosis. My hair is light brown. No flushing.

#30) False

#31) True-Mother has Grave's disease and hypoglycemia, sis has hypoglycemia

#32) Uh, true? I have no clue what makeup I was wearing. Revlon maybe?

#33) False

#34) True

#35) True

#36) True

#37) Used to be.

#38) Not really.

#39) True

#40)True, yes

#41) False

#42)Furnace

#43)False, Vinyl maybe?

#44)Tide, Clorox, no

#45) False

#46)True, not really

#47)Right

#48) I had DH for a while. I have 2 bumps on my hands that will get red if I eat gluten.

#49) False

#50A)True

#50B) True-but lots of muscle. I finally have the energy to do what I want now!

Thomas · February 2, 2005

What is this for?

flagbabyds · February 2, 2005

I'm sorry, most of these do not apply to me because I was 15 months old and I don't remember and I wasn't eating full food

#1) Please list any and all medications that you were taking at the time you can trace back to being the onset of your Celiac-related symptoms. Please include all vitamins and OTC (Tylenol, etc) drugs/supplements, too. If possible, please be specific about brand name and dose with each medication (Water pill='s Maxzide 25 mg, multi vitamin ='s Centrum one a day, etc), as well as how long you were taking the medication up to the exact point of when you began to experience your symptoms. If you cannot remember a drug's name, just simply try to list the type of drug you believe it was, if possible. Precise detail here is key, but don't worry about that if you cannot fully account for what you may have been taking, on the same hand.

Don

plantime · February 2, 2005

I checked out your link, and it told me nothing. Are you trying to second guess what's wrong with my body? Show me your medical degree first.

red345 · February 2, 2005

"I checked out your link, and it told me nothing. Are you trying to second guess what's wrong with my body? Show me your medical degree first."

That's good, Plan, just wanted you to read that, that's all. I haven't asked you any other questions, Plan, and you know I was not "Attempting to diagnose you" of anything. I don't think that anyone has to be a physician to find some suspicion abou the health of somebody who cannot consume caffeine because they're too dehydrated in the first place. Who would not want to make such a person aware of such possibilities as diabetes or Sjogren's in that scenario.

Plantime, and I address the beginning part of this to you as well, Smith, I believe that I have displayed overwhelming caution not to give advise to anybody here along the way. I am well aware of the fact that it is not my right to do so, and have not done what you are apparently attempting to accuse me of, Plantime, nor will I at any point. In one of my first posts, I came fairly close to recommending a couple of vitamins, at which time Judy corrected me on the spot. I than removed it hastly. As for some of the tests that I have talked about, are we robots here? Do you honestly believe that a doctor is going to be approving MRIs and stool cultures because of the advise of someone on a web forum who repeatedly points to the fact he is not a doctor? Common, Plantime.

As for the reason I am doing this, in the event that something does show up in terms of the medications or any symptoms relating to adrenal burnout, I would than ask whether or not it was permittable to send that information to a university source. In other words, if 12 people were to take this survey, and nine of them happened to have been taking this or that medication prior to the onset of symptoms, I than would ask EVERYONE whether or not it was ok to simply state "9 out of 12 people with confirmed Celiac Disease were taking medication X prior to the onset of symptoms. Would this be relevant?"

That is all that I would send off-that's it. I would not include any other information to speak of, and I would never do so without receiving permission from all of those that actually took part in the survey.

What possible harm is there in this, Plantime, would you please tell me that much if you have such a problem with what I am doing here? For you to even hint at the possibility that I would have any other intention in a survey like this has to just about be the most ridiculous concept I can imagine. And even if you were right about me, what on earth do you imply a person could ever do with this type of information?! I don't know anybody's name, I don't know where they live. And even if I knew that much, what on earth kind of "Fraud" (That is your implication, is it not?) could a person do with this type of information?! Your entire logic of suspicion makes no sense. You know what you are doing here, Plantime, and that is you're just trying to be nasty, probably because of my refusal to stand beside that "Beloved Christian, Mr. Bush." I know your type.

There are Christians who stand beside our Father out of the love we hold within for

His heart, than there are those who stand beside Him only because of their fear of death. Usually one can determine who stands where pretty easily. For a person like yourself to attach one of the Bible's most treasured versus within each of your posts, but than behave in the way you so often do, I find that to be a bit hypocritcal. There comes the day when we must all take a look into the mirror and stand there a very long time. I've done that many times myself. You may be due.

As a diabetic who was diagnosed quite young, I have had to live with the prospects of death for a long time. Throughout, however, I have realized that I was also given a calling in life, as well. And just for your sake of mind personally, Plantime, no, this is not it~. We all are, as a matter of fact. And so, I have recognized from the very beginning that I will live a long life, and I will continue to achieve big things along the way. And it has been that precise mindset that is the reason behind the fact that I am sitting here today with absolutely no complications to speak of. I have never lived a day without having within the hope that tomorrow will be another wonderful day. Without that, there is not a doubt in my mind that I would have had complications from this disease.

Another embedded principal is that I simply cannot stand seeing other good people in poor health. One of the first times I came here, an individual wrote me that was in her 50's that had a wide array of autoimmune disease. She wasn't supposed to even be around any longer after all of the terrible things the poor little thing had been through in life with her health. But she was a fighter, I could see that. I remember that she was so thrilled because of the years she had ahead of her to spend with her little grandaughter. I made that person, and others, the promise that I would do everything in my power to see to it that I would take this to the end. Most will look at such a declaration and attach a "Childish, disillusioned" label beside my name, and it's their choice to do that. But that will not take away from my ambition. I have never once failed at anything I've tried to do, and I do not intend to with this, either.

While people like you evidently can ignore the fact that there are a couple of children here who are missing out on fun things during what should be their best years of life, or you can ignore the fact that several of those here are retiring individuals who deserve to spend their golden years in good health, I'm not going to do that.

While the vast majority of the verbal attacks that I have made here were nothing more than an attempt to keep the focus brewing, in two of those cases that was not the reason. The explanation for those two specific outbursts had to do with the concept that some of you were riding my butt when the only thing that I have been trying to do all along is help. We have become such a "Me first" society today, it's absolutely terrible. "As long as I'm doing fine, who cares." Sadly, that is what's become of us. Even those that had a good heart at one time have fallen into this trap, but I'm not going to do that.

So if there are sick people here who have done everything that's been asked of them but they are not improving, Plantime, you go right ahead and continue to attack them w/ your judgments. You keep telling them that they are not following the "Golden diet," even though that's exactly what they've been doing for a year or more, without success.

In the meantime, I have clearly acknowledged the strong possibility that nothing will come of this survey. But at least I will have made the effort to see if there was anything more that may come as relevance. If nothing comes of it, someone like you will be the first to say, "What a waste of time." Thankfully, I would hope that a couple of others will realize that it was an attempt at something more, at least.

When I say that I can prove there is no such thing as Celiac Sprue, that doesn't mean that I intend to "Cure it," for goodness sake. I am merely referring to the process involved. The only contention I have made is that I believe there is a "Switch" that can be flicked on that may vastly improve one's health. And that's exactly what happened in our own case. You, ma'am, are not going to tell me otherwise.

In this quest, I have not gone against anything advise given to her by her various physicians. Now I will admit that I have done that in my own medical case, truth be told, but not her own. I merely took a critical look into her medications, and performed a great deal of research on natural alternatives that I thought may be of help. And low and behold, it just so happened to have worked.

But that doesn't mean this would work for everybody- I would never, ever say that. Every system is different. But the fact remains that when a certain OTC therapy helped to lower her lipids, and the removal of another drug brought with it further success to her own, individual case, I'm just not going to ignore what happened. Now, as further diagnostic tests come in to support this conclusion in her individual case, don't you think for a moment that I'm going to sit back here and be undermined by you about what has taken place in her own case!

Nor will I allow you to undermine me when it comes to my educational achievements. I achieved my MBA in 5 years at the age of 22. No, I did not graduate from Harvard, but it was a big 10 school, so I'm pretty happy about that end of things, Plantime, regardless of what somebody you may think of me.

While this does not qualify me as an "Expert of medicine," not in the slightest, I maintain the belief that I, or anyone else here holds within the intellectual abilities to use a computer to research a couple of medicines and health conditions, for goodness sake. So when I say, "Look at this condition, or "See what this does," I certainly am not making the declaration that everybody has this or that given condition. We are not computers here, are we? Do we not have the God given ability to understand such an implication?

If a weblink to this or that disease is offered, and a reader believes that it may accurately describe what is going on with them, what possible harm is done if he/she than were to go to their physican and inquire about the possibility? From that point, if the doctor believes that you don't have the condition, than you don't! But if he/she believes it may be relevant to the situation, than he'd want to test for it. It seems quite silly to me that you would think otherwise.

As you may have read in the Sjogren's article, on average it takes physicians six years or more before they come to accurately diagnose the condition once the symptoms have started. The same timetable is involved with Celiac Sprue. There is even a year long period involved with diabetes. If it took any of my account reps to perform such tasks, I couldn't keep them around. So, while we must thank today's physicians for their many wonderful achievements, as a whole they could do a far better job, on the same hand, I would contend. At the very minimum, patients themselves can try to do what they can to determine what is happening along the way to see if it may ring a bell.

To the delight of many, I'm sure, yourself included, you have a week and a half left to put up with me. After I submit the paper I will have no choice but to leave for good, as I have made note of several times. Once that is in, people can do with it what they so choose to do w/ their physicians in the event it can be determined to be of any relevance. And yes, for your own good, be advised that I will not be telling anybody to do anything at all. From that point on, however, it will be up to each individual to carry on with their own research as it relates to that of their own individual case. My biggest wish all along has been to show a few of the others that there may just be a little more to all of this than meets the eye. And if I can manage to highlight the outlines, I hold every bit of confidence in many different people here that they will be able to draw in the rest.

aaascr · February 2, 2005

1. Onset of really bad celiac disease symptoms started in Aug 04

Officially diagnosed in Oct 04

Advair 250/50 2xs a day for past year (asthma)

Astelin 2sprays a day for past 2-3 months (allergies)

Semprex D 2xs a day for years (allergies)

Tylenol as needed for years

Ventolin as needed for years (asthma)

Past 3-4 years unless otherwise notated:

Buffered Vit. C 1000mg per day

KaitiUSA · February 2, 2005

From Red345 post-"Your entire logic of suspicion makes no sense. You know what you are doing here, Plantime, and that is you're just trying to be nasty, probably because of my refusal to stand beside that "Beloved Christian, Mr. Bush." I know your type.

There are Christians who stand beside our Father out of the love we hold within for

His heart, than there are those who stand beside Him only because of their fear of death. Usually one can determine who stands where pretty easily. For a person like yourself to attach one of the Bible's most treasured versus within each of your posts, but than behave in the way you so often do, I find that to be a bit hypocritcal. There comes the day when we must all take a look into the mirror and stand there a very long time. I've done that many times myself. You may be due."

Red345- you know alot of people are bad in this world there is nothing wrong with wanting to protect yourself. To a point you need to be aware and suspicious so don't get on plantime for that. You can't classify what we are like because of where we stand on political terms. I am a big Bush fan...but I have alot of people who I get along with that are not in fact they are complete opposite.Red345 that is being hypocritical. You can't see someones heart and therefore can't judge where their heart is with God. I don't have a problem with you but I do have a problem if you try to judge me and other people by our political views. This is a free country. For you to say Plantime was being hypocritical and nasty maybe you should look at youreself with your post you just put. Just don't get on someone because of their views and them having suspicions...thats just not right.

I'm sure you and every1 else on here are wonderful people and I am glad that I was able to find this site with all of you

red345 · February 3, 2005

Point taken, Kati, and it's a fair one at that. You're a good person, I can see that, and so my comments are not directed at you, in any way. The problem I have with Plantime's approach, Kati, is that she has gone out of her way to discredit me at every oppurtunity that has come for her. In the remaining cases, she has invented them. Plantime is a good person, but she has a nasty side. While others may allow her to boss them around, I will not.

We are adults here, most of us, at least. For the hundreth time, I will point out that I have never once stated that it was appropiate for anyone here to consume gluten, and at what specific point Plantime has come to figure otherwise is beyond my comprehension.

Nor have I ever once given any type of medical advise along the way, and Plantime knows that. For her to say otherwise, that is very unfair. If I have done anything at all, it has been to point out that there may be other variables of consideration, but anyone of any limited intelligence to speak of should understand that no person talking over a computer screen is capable of diagnosing anyone of anything- let alone somebody who is not a doctor, an issue that I have highlighted time and time again.

Plantime's only purpose all along has been to routinely undermine my opinion at every oppurtunity she gets, to discredit. Whether she is doing this purposely or as part of some sub conscious action, I don't know.

But what she is going to understand here and now is that I will not tolerate it. Like everyone else here, Plantime is ill. She's not feeling well because she has a disease. I hold great compassion for her when it comes to that issue, as I do for everyone else. But unless she is on Morphine, or a drug similar to it, that gives her no right to treat me or any of the others here with such nasty resentment. Even in my tyrades that were designed only to attract attention, I never went after any one person's competancy or intelligence. And that was when I was purposely trying to be mean.

Now I will applaud her for being such a strong supporter of the gluten free lifestyle, but will offer her no respect for her refusal to believe that other issues may be at work her when we have certain people here going to the ER on a monthly basis because of their failing health.

I understand that I am bound to lose respect by many for taking my shots at the medical community, or to go so far as to say that their approach is wrong in certain areas. But to disagree with the medical community in these precise fields is not to say that my opinion is right, either, you must understand that.

Now, when it comes to amino acid metabolism, in particular, I have been told by three different physicians that they "Don't know a thing about them." That's a direct quote by two, I'm paraphrasing for the other. Well I do, and would feel comfortable about my chances in a quiz with any IM doc down at the stripmall, I will tell you that much.

There cannot be anything more important to one's health, to medicine itself, than that of the amino acid family. Once again, for the hundreth time, they are exactly what they are described to be-"The building blocks of life."

Eric Braverman, MD, and Carl Pfeiifer, MD, just so happen to be physicians as their titles should elude one to, and they have PROVEN time and time again that of the power behind the aminos. In these studies, they have also managed to have proven that particular health issues are bound to rise in a state of deficiency of this or that amino.

Now, if I am to find a great deal of fascination in two or three specific sequences these DOCTORS lay out in their research as they may POTENTIALLY relate to this disease (In my opinion, of course), I would ask anybody why it would NOT be my duty to share that with others so that they may discuss such issues WITH THEIR DOCTORS if it deemed relevant by their DOCTORS, especially when I hold in my hands TWO specific lab panels that verify such "Deficiencies."

From that point, in terms of actual, specific medical "Terminology," why wouldn't I point out a few of those possibilities that would relate to the adrenal/kidney/metabolic function. There is overwhelmning evidence here to SUSPECT there may be active autoimmunity here IN SOME. As a matter of fact, correct me if I'm wrong, but I believe that Celiac Sprue just so happens to be considered that of an auto immune disease in and of itself, does it not?

I can confirm this much for Plan-if our country's doctors would begin to give adrenal function its fair due, than I couldn't begin to tell you what impact that would have on autoimmunity, as we know it. And as you yourself proclaim, Kati, we live in a free country, so I should be able to say what I have here. But not in the opinion of Plantime, evidently. That is my issue here, Kati.

KaitiUSA · February 3, 2005

Red345-I understand where you are coming from. And I have no doubt your intentions with this survey are good. I know you are trying to help and if there is any similarities with things between celiacs its a good thing to know. I completely agree you should state what you think on here...and I for one like to read what everyone thinks. It's good to be informed and learn other ways of looking at things

red345 · February 4, 2005

Thank you, Kati. And BTW, I do not hold any hate in my heart for Pres. Bush. Truth be told, I believe that he is probably one of the most kind hearted individuals that has ever been in the White House, and I look forward to what he plans to do over the coming four years. I'm not a "Moore liberal," in other words, not by any means. But I am a Democrat, and unfortunately a very small segment of today's Republicans seem to believe that one's Christianity is defined by their politial allegiances. Because I had addressed some of my personal concerns about a few of the healthcare policies in the past, and therefore gave away which side I stand on, I'm not sure if that may be part of the problem that Plan has with me, or not. In any event, that is why I mentioned what I did. But I suppose there may be a a few other reasons for her resentment, too. That's quite possible, given the circus like atmosphere I've gone with here~. Good luck to you now, Kati. You'll be just fine.

plantime · February 6, 2005

Red, I have nothing against you or what you are trying to do. I refuse to take part, and I want others to know that I will not. I do not trust anyone that I do not know personally. You were quick to pull out the religion/political belief card in this! You don't have celiac, you don't what it's like to have to live with it. You have diabetes, which mainstream accepts. Try telling people that you can't eat wheat, and see how many of them try to feed it to you anyway. And, just so you know, I am on darvocet for arthritis. You are the only person that I take this attitude with, probably because you don't take it from me or anyone else. I have had enough of people telling me what they "think" is best for me. I spent thousands of dollars last year trying to get help and answers from the medical profession, and all I got was one test after another that told me that I am a perfectly healthy human being! It is not caffeine that I avoid, it is the sugaryness of the sodas. Tea keeps me up all night, and I do need to sleep! I can eat chocolate until the cows come home, and it will only make me fat! If you are not trying to give us medical advice, then what exactly is the purpose of all of these questions? What exactly are you researching? What are your qualifications to do this research? Who are you, besides another person, that we should tell you all of this stuff about ourselves?

plantime · February 6, 2005

I try to be a positive and upbeat person, Red, but something about your posts just rankles me to no end. Maybe I am just tired of not feeling well, maybe I am tired of people that don't know anything about it acting like experts, and I know I am tired of being told "take this pill, and you will be fine." I don't want to be fine, I want to be excellent! I don't want to be analyzed, poked, probed, prodded, scanned, x-rayed, and cut open anymore. I don't want to spend any more money on doctors that just shake their heads at me, nor do I want to spend money on drugs that tear my body apart. I know that I feel better gluten free. It does not cure everything, I still have arthritis to deal with, but I feel so much better, that I can actually see a light at the end of the long, dark tunnel. I have turned to herbal remedies to help me with my health, and I have a personal healer helping me learn to take care of myself. She is fantastic, better than any doctor I have ever been to, because she is teaching me how to listen to my own body, and do what is right for me. I knew what her credentials before I told her anything, now I want to know yours before I answer your questions. You have been asked several times, but I have seen no answers. That is why I will not take part, and why I continue to say so. I don't want to read your rhetoric, I want to read your credentials.

red345 · February 6, 2005

Ok, I understand Plan. I'm sure that I was a little bit out of line there, too. I certainly do understand the frustrations you have about everything, too, Plan. I guess the only issue that I had was your declaration that I am here telling people what to do. Time after time, I have stated that I am not a physician, and that what I have said here should not substitute for the advise of one's physician. I have never offered medical advise- this has only been research driven. As for what has worked for mom, I acknowledge, more than any other, that it will not work for everyone. If I have highlighted certain tests that I feel would be relevant, I have done so with the acknowledgement that our doctors are not going to be prescribing medical tests because some kid on a web forum believes they may be relevant. I guess my point, Plan, is that I think the reader has to have some common sense having to do with the prospects of what I have said here. I guess that was my biggest issue, Plan.

But let me also say this-As a long standing Type 1 diabetic, I have observed numerous accounts described by many that offer valuable clues having to do with what I myself have "Felt" from time to time as a diabetic. The most glaring similairites seem to involve those symptoms I experienced back as a child when I would occasionally fall into a state of Ketoacidosis for a short duration. Yes, that may have been a long time ago, but just like that time you had Mono or Chickenpox as a child, you don't forget the experience. It becomes embedded, to a degree.

Certain angles of my approach may be unconventional, and if unconventional is required to mean "Uneducated" in the eyes of the beholder, than you have every right to make that determination. I'm not a car salesman, afterall.

In the meantime, I will not deviate from my belief that Celiac Sprue is a dynamic "complication" that is merely a process brought on by other variables, which may be one of, or a combination of any of the following-stress, hormones, metabolic function, liver impairment, amino imbalance, toxicity, and/or a presence of Mycological infection. Possible, though nearly impossible to be able to prove-microscopic parasite of unknown origin.

95% of my opinions are based on the collective pool of articles/interviews written/spoken by the finest physicians in this country, and about two dozen of their books. I did not skim through these, I read each from beginning to end, stopping along the way to clarify any concept that I could not understand.

At that point, there are two remaining issues-pattern recognition, and degree of comprehension. If I have the confidence that I have been able to comprehend the available literature, I hold the confidence within that I will manage to "Beat" any other at pattern recognition, for such has always been the core variable of dominance in my pattern of learning.

Futhermore, any patterns that would show up here would be forwarded on to a university source, as I have specified. I do not have a right to diagnose or recommend, Plantime, but we should all have a right to continue on w/ investigation. And most certainly, to keep the faith alive. That is the way I would respond, Plan, but I do appreciate your response, and its honestly. Thanks.

PS-Thank you to all of those that did take the time to complete the survey. We'll get to it next week. Thanks again so much.

Professor · February 6, 2005

Kristin,

I initially decided to be nice and sweet, and remove my post to make you happy, but then I thought about all these other people saying whatever they wanted, and I didn't see you reprimanding every one of them (or did I miss all of those?).

Why all these other posts go on and on . . . and no one stops them, or bans the argumentative people, but when I point out the truth -- that it's not nice for Red to condescend and call us "you poor things," or that this quasi-research isn't as private as Red lets on (every single person with a computer and the Internet can read whatever you answer here) -- out comes the reprimand. Is it personal?

One last thing, and then I'll sign off permanently (unlike Red, who promised to leave, but never did). Since you've noticed that Red is the common denominator in all of these arguments, why not deal with the root of the problem? There's a "Red" on every forum, from arthritis to aplasia. The "Reds" of the Internet upset people who are there for help, who are sick, who are trying so hard to make their lives better. Good people leave, rather than be hassled daily for going to doctors, following treatments, and trying in the only way they know to get healthy. But somehow the "Red's" of the forums convince moderators that they have every right to be there, and tell everyone how victimized they are because they get no respect. Moderators need to learn to do their jobs, not just say, "Quit it." Wouldn't it be easier to throw out one bad apple and save the rest of the barrel? (We could make a nice big gluten-free apple pie to celebrate.)

Signing off. No need to reply, since I won't be back.

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