Comprehensive Questionare-1 Of 2

[MySuicidalTurtle]

I am finding that almost every thread/post by red345 ends up with some sort of arguing. I know that it is not intentional.

However, in the board guidelines it clearly says:

"Show respect for each board member, no matter what you think of their post(s). This is not a place to quarrel."

This thread was created for information gathering. Can it please go back to answering the survey and step away from people feeling threatened. If anyone has any issues with red345s' survey please PM/email him. We don't want to see anymore aruing (intentional or not) continue on the board.

Thank you!

[Maggie1956]

Hi Red. I'll try to answer your Qs as well as possible. Here goes....

1. No medication at time of onset. I think I've had symptoms all my life. I was born is 1956.

2. As a child, I got a lot of flu-type symptoms and asthma. Mum gave me Benadril Expectorant to clear the chest cold.

3. Rice, cheese, peanuts, capsican (peppers), onion, cabbage. Plus a few others I can't think of.

4. I live in Queensland, Australia, is a semi-tropical area. Have done for nine years.

The climate here has warm, humid summers ad mild winters. .

Previously lives further south in New South Wales. The climate there is cold winters and hot, dry summers.

5. I remember having a lot of pains in my stomach area from around nine years old. My Mother used to say I would double up in pain as a baby.

6. Yes I have has pain (in stomach, intestinal, general muscular body pain, most joints, plus migraines) and fatigue for as long as I can remeber. It was there before i went onto a gluten-free diet.

7.Most days not more than one or two.

8. Chronic fatifue, fibromyalgia, hypothyroid. Had scarlet fever at sixteen, and glandular fever at twenty.

9. A lot of pain in muscles, particularly in winter. Tingling and itchy face, numbness in big toes, migraines, arthritis in lower back, fibromyalgia, chronic fatigue, cold hands and feet, endometriosis (hysterectomy in 2001), anxiety/depression, sleeping problems.

10. No flu shots, regular immunisation as child. have tetenus shot every ten years.

11. No other medical tests

12. No.

13. Yes, I had an endoscopy.

14. I always TRY to avoid gluten. The pain isn't worth it.

15. False

16. False

17. True. I have ALWAYS craved sweets and sugar.

18. True.

19. True.

20. False.

21. False. Not inside, but there are a lot of trees etc. out in the yard.

22. True. Bed around 10:30pm. Arrise around 8am..later if possible. Never feel

rested.

23. Yes. I'm often stressed and I have frequent panic attacks. Yes, all the things you

said.

24. True to a point. I've had a lot of the symptoms all my life, but it has gotten worse over the past couple of years, during first stage of menopause.

25. Yes. A divorce, child custody problems, nervous breakdown, clinical

depression/anxiety, mother and father dying etc. etc.

26. A lot of abdominal pain, bloating and wind.

27. No real pattern apart from my mornings are no good until I've...been. I'm very

uncomfortable. Sometimes I get severe pain just after eating, depending on what

I eat.

28. I used to have rolled oats most mornings with a cup of tea. Not much for lunch,

and meat and three vegies for dinner. Not dessert very often.

I now eat more salads and have changed to a gluten-free muesli for breakfast.

29. True. I'm a redhead. I'm usually pale. I perspire heaps.

30. True, I think. My father had symptoms, but not d/xed.

31. True. Mother was type 2 diabetic. Brother= type two diabetic.

32. False.

33. I find it hard to breath at times. heartbeat is fast.

34. True.

35. False.

36. False. Not at all.

37. False.

38. True.

39. False.

40. False. No.

41. False.

42. Electric heater.

43. False. Lino in dining and kitchen, tiles in bathroom, and carpet in bedrooms and

living room.

44. Laundry detergents are the same. Other household cleaners and personal ones a

are more for sensitive skin than before.

45. True.

46. False.

47. Left-handed.

48. True.

49. True. Unsure.

50A. True. Was a skinny kid.

50B. True.

Hope this helps you.

[red345]

I probably knew it would come to this, one way or the other. Professor, you stay put, and I'll leave five days earlier than promised. We'll just do it that way, and be done with it. I wouldn't dare say a single word anymore in regards to my conclusions, regardless, so I'm done.

All of my research is in, and it has already been passed along to the two sources that were kind enough to work with me on this throughout the process. It was 19 pages long, so I doubt anyone would've gone through it, regardless~. I know that many of you don't get into the longer research, so I won't bother w/ it here. I have highlighted the main concepts of my beliefs along the way, so anyone that's interested has the beginning part of it, at least. I may never have gotten down to the precise details of it here, but I did just that in the paper, and it does add up, to me at least, so we'll just wait and see what they can do with it, if anything at all.

I know they are very good people who will look into the issue with attention to detail, so that's all I could ask for at this point. They will do what they will do; whether or not that opens up another angle to this, I couldn't possibly know that answer. For those that took part in this particular poll, do understand that none of this was relevant, unfortunately, so it was not passed on. I do again thank you very much for all of your kindness, for the willingness to help out.

Before I leave, I would like to once again thank Mr. Adams for putting up with what did become that of my relentless challenge to the current theory as it relates to this disease. Quite honestly, sir, I don't know how you managed to do it for this long without reprimend. I will forever be gracious for the oppurtunity that you gave me here, thankful in more ways than one. You are an extremely nice man, one who is clearly dedicated to helping others. For being the type of person you are, understand that you will always be rewarded in life for having that trait. Good things are always returned to good people that do well for others.

If you are of Faith, to live life by fearing death isn't a real life at all. But that doesn't mean that you do not have a duty to do all you can for your health and for that of your family's goodwill. We have mothers here who need to be there for their little ones, treasured grandma's, daughters and sons. If not that, extended families and/or loving neighbors, and you are an important part of life to all of those around each and everyone of you.

That said, it is your duty to do all that you can to get yourself better. If you've avoided gluten 100% and you now believe that you are getting your life back, be thankful and get out there and go do something big with it now. For those that aren't getting better, there comes a point when common sense must enter somewhere along the lines, I would think. At some point you are going to have to venture out of the cult following, and do a bit more for yourself-still avoiding gluten in full, you may just have to implement a few of the other possibilities, too.

If you've done what's been asked and have been told that you are fine but truly believe within that you are not, keep looking. You may just have to do part of this one for yourself if you are ever going to get better. Don't get sidetracked with your research like I did a few times. Keep going after all of those associations that make sense to you as it relates to your condition.

As a person with Celiac Sprue, you know what to watch out for-diabetes, neuropathy, neurological disturbance, metabolic complications/endocrine imbalance (Thyroid, Kidneys, Adrenals, Thymus, etc), and connective tissue disease (Lupus, Sjogren's, etc).

BTW, if I ever was a physician, and I was only allowed to test a patient with Celiac Sprue for one blood test, I would choose the Protein Electrophoresis. I would consider the test to be vital here for some, but that's an amateur opinion now, remember. For those of you who may go with the assumption that I'm looking at MM, that's not necessarily the case, especially in the presence of a normal CBC and RBC value. Several infections and issues pertaining to the parathyroid could all affect this test. I say this only because of my suspicions there may be a state of Polyclonal Gammopathy here with some, a condition that is highly unspecific to anyone condition. But it does narrow them down signifigantly. For those of you who have gone on and had only limited relief, I cannot emphasis this one enough-coming from a person without a medical degree now, remember.

If you're stuck, use this wonderful resource at celiac.com. Set out a schedule this month and tell yourself that you are going to read X number of articles under this section this week. Browse through the forums, go back if you must to see if anything may describe your symptoms. There is probably a 99% chance that whatever it is that you have another (Others) are experiencing, too. If need be, private message them to see if they respond. Join a partnership with them so that you can determine what's going on between the two of you. Maybe, just maybe, one of you will stumble onto something.

In fairness to our doctors, they can't possibly be expected to determine each and everything that is wrong with you during your office visits. They are not, and should not be expected to be miracle workers, afterall. Most work for hospitals and clinics where they see dozens of different patients. They can only do so much. So rather than going in there each time and demanding to know what's wrong with you, you may just have to do a little of your own research on this one to help out. See if you come up with anything, than ask him/her about the possibility during your next visit. He'd appreciate that so long as you don't walk in with two dozen things to rule out. Narrow them down into those that are realistic possibilities.

If you've gone on for a year or two and you believe that you are not getting better, there's a strong possibility that nothing is going to change unless you do something about it yourself, you must understand that. And it wouldn't hurt your chances to be a little prepared next time. Believe me, if you are smart enough to have memorized all of the various foods to avoid, all of the "Hidden names" they are represented by, you can do this. Once again, I have not read one "Bad post" here by any of you. You are an intelligent group, most of you understand the core basics of this disease. So go do something about it.

Regardless of wealth/power/position, etc, history brings with it one very valuable lesson-those who have established the greatest achievements have done so on their own, as a result of their own actions. Nobody is going to give you a bump with this, not with the type of confusion involved with this disease. There is a strong chance that you are going to have to try to help yourself at some point. And some here have done just that, and they've achieved. Others have a different system, it would appear. That doesn't mean "Life's not fair," it only means that your road has a bigger fork in it, but once you get around that you'll be stronger than anybody else here. You're not too old to overcome anything, your schedule isn't too demanding if you're sitting in here on a daily basis, and I know that you know how to use a computer and the internet.

I have witnessed a hundred different people here that have indeed managed to make a few connections with this. Much of the investigation seems to be repeating itself and tends to lack detail, but the attempts are at least being made, and that can only mean that some of the connections are getting established, so that can only be a good thing. You have made the associations between a thyroid problem and Celiac Sprue, or you have observed what may be a pretty big correlation between diabetes and Celiac Sprue. From there, you have read about genetics, or autoimmunity. At every corner, there may just be another key to unlock yet another door. You all have the power here to do and become what was meant for you. Some have done just that, others may still be looking for those types of answers. But to get any type of order established back to your life, you have to get better. And if it's been a year or more since you can say that, than there are fairly good odds that you're going to have to help yourself here a little bit.

Rule out the other GI disorders. Rule out infections. Rule out the autoimmunes. That Merck's manual that looks so terribly complicated is truly nothing more than 7 key pathways with certain "Spin offs." Once you look through it and take in what is written, you'll start to see that. Soon you see that some of the PH issues and a condition like Lupus may have some associations. Once you absorb the concepts of the diseases and the requirements of nutrition by the body, you will just naturally be led to the aminos, the fluids, etc. Than you will understand those connections, and be able to relate them back to what you started to study in the first place.

Personally, in my amateur, non-medically educated opinion, of course, there isn't a doubt in my mind that the adrenals and certain hormones called Cortisol, Cortizone, Androsterone, and Aldosterone may be at work for a few of them here-1 or all. I believe that others may have a liver issue, one that could theoritically explain for much of this when you take into account that of the non essential aminos. I have a great deal of suspicion about vitamin B6 and Niacin's role with this, and I will always be convinced that a few here may have a Mycological infection, of some form. Whether or not it is Candidiasis, however, that is difficult to determine. I believe there is an association to all of this with the Mitochondria c's, one that could be associated back to one of the Myeloproliferative Disorders.

But what I just said right there, is that really a disease, or is it merely the result of an infection, or an amino/vitamin deficiency/toxicity? If it can be blamed on a vitamin deficiency, that goes back to confirming Celiac Sprue as being the dominant variable. If it's one of the aminos, that's an entirely different issue altogether, one that could "Cause Celiac" I believe-the exact opposite.

These are the issues that you must determine. And believe me, if you're good at puzzles, or reading maps, some of this may just make some sense to you eventually~. It's not your job to diagnose anyone of anything, yourself included. Contrary to what some may feel, a rational person should be able to understand that you are only trying to help. Personally, I would recommend that you be a bit careful with what you have to say publically, and that is because some of those here do not understand that they want to have the disease they do in the sub conscious mind. Being sick means being important to some, and with those one will never, ever win.

Thank you to all of the wonderfully kind, respectful people that I ran into along the way here. As for the "Enemies," I too wish you nothing but the best. I expect many big things to come for many of you, those that are bound to be quite positive. They'll get this nailed down for you folks at some point. In the meantime, never forget that to live a life without hope is one that is never going to get you anywhere. Those of true Faith will always live on, while those that do not will forever bar themselves from capturing that better day. The choice of who you are going to be, what you are going to do, can only be established by the path you so choose to follow.

God Bless to all, and I truly do thank you all once again. Never give up the fight. So long as you accept that principal, you will not lose with this. He's up there, and He's sitting right there beside ya'. Sometimes you just have to make sure that you're doing your part to get that help~. Thanks again to all.

[celiac3270]

Despite all the controversy about your posts, I did enjoy reading your opinions and research--even if you don't have a medical background--and will miss your posts. You went into a lot of aspects that many of us, myself included, don't--trying to find correlations between celiac and other conditions and really going beyond the typical celiac research and posts and relaying links to gluten-free lists to newbies, etc. It was a refreshing change from the norm. around here . Even if others won't, I'll miss the posts--thanks.

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.)

Even if the "Reds" of the forums offend people in some way to set off the whole argument, everyone plays a role in it. Afterall, I'm sure there are some who dislike Red's posts or don't believe in the research, but just scroll through them whenever they come across them. Additionally, it's easy for people to aggravate the situation questioning things or making unkind comments about the "Red" due to past gripes....I think everyone is at fault when it happens--one for starting it and those who don't have the self-control to ignore the agravator. Kristina's comments were simply aimed at the general argument--not specifically you or anyone else.

The surveys are just about personal choice. As you can see, there were very few responses, so most chose not to share this personal information--he's not demanding that you take the survey, but asking for a favor. And I don't think his original post was meant to be provocative--he listed the questions, asked that we fill it out, and said that he'd understand if we didn't.

Basically, though, I think that everyone has a right to be here, so long as they follow the guidelines of not spamming the board, promoting his/her own company, or being particularly nasty and virulent to other members. Red's research may have helped some on the board. Of course, if anyone has a problem with any member, he/she has the option to hit the report button and explain the complaint.

I'm sorry that you have chosen to leave, as well--I don't want anybody to leave the board since we can all learn from, help, and educate each other. I'm trying not to get too deep into this quarrel, but I think it would be better for the board if everyone stay and simply ignore the posts of members who bother them.

I apologize if I have offended anyone with this post--I should probably stop now since this post, too, has nothing to do with the survey.

Back to the topic........

[KaitiUSA]

I also really enjoy reading what you have to say Red. I try to keep an open mind to things and learn every aspect that I can on things. Sorry to see you go...you'll be missed

[strack2004]

Red345, I hope this signing off 5 days early doesn't mean you won''t post your paper. I am looking forward to reading it. Think I have given you my email address, so please put it on there if you don't post it here. If you don't have it, let me know. Strack2004

[Carriefaith]

The surveys are just about personal choice. As you can see, there were very few responses, so most chose not to share this personal information--he's not demanding that you take the survey, but asking for a favor. And I don't think his original post was meant to be provocative--he listed the questions, asked that we fill it out, and said that he'd understand if we didn't.

[2new2celiacs]

Wow!

I am still fairly new to this forum and for the most part, have felt very welcomed and happy to know that there are so many kind and understanding people who have been dealing with the same issues that I have been dealt. I am grateful to those of you who use this as a positive exchange as well not using this as a place to judge or scrutinize others.

In regards to Reds survey, I was surprised to see that there was some posts made that seem to have taken offense to what was asked. I am not sure why you seem offended or felt the need to comment in the negative fashion that was taken in your response. If you do not want to share,but why be so unnecessarily rude when it was presented as a choice survey?

As a new celiac who does not know allot but taking the time to learn and will continue to learn until the day I leave this earth, I am most grateful to people who have,who continue and are willing to learn to try and figure this thing out. It seems to me so far, that celiacs has been around for quite some time and any studies that have been made or will be made are a benefit in all of our cases. Therefore, I am happy to see such interest and again should stress that if you feel uncomfortable sharing your info that seems quite anonymous and harmless, then that is your choice, but I felt that it was unnecessary to come off rude to someone that is trying to learn how this effects each and every person. So many of us seem to have similar complaints where as others with celiacs have little to no symptoms at all. In my opinion, I find this all very interesting and would feel terrible if someone was made to feel disouraged or ashamed for a question or concern they may want to ask or share.

Sorry to have be so blunt, however, it just took me by such surprise that I could not help but stand up and speak.

Thank you,

Sarah

[plantime]

I talked with Red via email, taking my issue with this off the board. I have learned that he is simply looking at a broader spectrum for answers. I am sorry for the hostility and defensiveness. Here are my answers.

#1)My celiac symptoms date back as far as I can remember, just no one knew what it was. I don't remember all of the meds and dosages that I have used.

#2)Ibuprofen, 200 to 1000 mgs every four hours, from 1996 to current, but not every day. It was for pelvic pain after a car wreck.

#3) I have had testing showing that I don't tolerate at all members of the grass family, including wheat and rice. I have ana reactions to rice. I cannot eat poultry, eggs, stone fruits (peaches, nectarines, apricots, plums), tree nuts, or strawberries. I react badly to dust mites, pollens, and many fragrances.

#4)I live in southeast Kansas now, but lived in Michigan and Arkansas when I had undiagnosed symptoms.

#5)I am 40. The first symptoms I recall I was 8, so that would be 1972. I have always had anemia and iron deficiencies, and I still do.

#6)I had never thought of it as abnormal, I always thought everyone hurt the way I did. I was diagnosed with rheumatoid arthritis as a teen, and the doc said that was why I was always tired.

#7)8-10

#8)Rheumatoid arthritis and anemia. Gall bladder disease, which may have been caused by the Lipitor the doc had put me on when the celiac disease was first looked into. Rheumatic Fever when I was 13, caused by the only bout I have ever had with strep.

#9)Joint pain all over, have had various probs with it since childhood. Insomnia, mostly related to hormone fluctuations. Dehydration, the one prob the docs could not explain, as it seems my kidneys work VERY well!

#10)I had mmr, Ttd, polio, and smallpox vaccines as a child. I get tetanus vac when needed. No others. Probably won't get tetanus anymore because of a bad reaction last time.

#11)Abnormal test results. Yep. Hormone levels are way out of whack, one says menopause, the other says pregnant (which I am not). Blood sugar levels are normal, but insulin is high. Doc said it's because I'm fat. I don't believe her.

#12)No, no stool culture.

#13) Endoscopy with biopsy confirmed diet results.

#14) True.

#15)false

#16)false. I am a non-drinker

#17)true

#18)true

#19)Maybe true, maybe false. My bladder fills up quickly, and it holds a lot of fluid

#20)false. I live in an old house, with no molds.

#21)True. Aloe Vera, spider plants, ivy, and Christmas cactus

#22)true. I do not sleep long, and not usually very deep. This will go on for about two weeks, then I will "crash" and sleep sound and deep for a night. I go to bed between 10 and midnight, and wake up around 7

#23)false

#24)false

#25)no

#26)abdominal pain and anemia

#27)My attacks occur about 1 hour after eating

#28)3 meals and 3 snacks a day. Meals were proper and nutritious, snacks were junk.

#29)My complexion is beautiful. My skin is clear, with color in all of the right places. My eyes are blue, and my hair is med brown shot through with white.

#30)true. My sister has it

#31)true allergies (mom, sister, aunts) arthritis (mom, sister, aunts, grandfather)

#32)false.

#33)true. doc said it was asthma allergy.

#34)true we have always had cats and dogs

#35)false

#36)true. sometimes I don't know when to shut up.

#37)false. What I can't handle, God will.

#38)false. I won't make friends if I am shy.

#39)false. I was too young to notice.

#40)Only the caffeine in chocolate. nope.

#41)false

#42)gas furnace

#43)It was old carpeting or vinyl flooring.

#44)Tide. No change

#45)false

#46)Never used them./

#47)Right handed

#48)I have always had itchy skin. With occasional hives.

#49)My tummy can be heard from across the room when it is in distress. That is whenever I eat something I shouldn't have.

#50A)I was a skinny child, but gained weight while pregnant the second time around

#50B)flase. I have actually been losing weight. Yay me!

[red345]

Thanks, Plan. That was very nice of you. Thanks a bunch. I'll try to take a look back at these this week. Thanks for the nice email, too. I'll get back to you w/ that by email sometime over the weekend. God Bless.

[Guest BellyTimber]

It's astonishing Mr Red wouldn't explain himself either before starting or when asked.

Has he only appeared recently or has he been dogging you for a long time (I haven't checked back)?

M.