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CeliacMe

Why Are You Looking For Doctors?

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I think this is a WONDERFUL idea and wish I could be a participant. But, I can't. When I post, it takes me so long to compose my postings that several get between who I am responding to. When I got so ill for those many months before my diagnosis, I knew that I had to do everything to keep the vitamins and nutrients in my body. I did not suceed and only after the diagnosis did I realize how the missing vitamins and nutrients affect your brain. I used to be a very intelligent woman with a high IQ and a excellent vocabularity. Now, I can be in a conversation with someone and I can't think of words or the thread we are discussing. This is not brain fog, but a definite dumbing down. I have a heck of a time paying the bills and finding papers I need. I used to be the most organized person there was - could put my hand to a needed file or paper in minutes. I was really bad in the brain dept. shortly after the diagnosis, but over the last 2 years I got some of it back. But, I am far from where I was before the fast downslide. I hope that many people will get involved with this as I think it is a worthwhile project.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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Guest mvaught
I think this is a WONDERFUL idea and wish I could be a participant. But, I can't. When I post, it takes me so long to compose my postings that several get between who I am responding to. When I got so ill for those many months before my diagnosis, I knew that I had to do everything to keep the vitamins and nutrients in my body. I did not suceed and only after the diagnosis did I realize how the missing vitamins and nutrients affect your brain. I used to be a very intelligent woman with a high IQ and a excellent vocabularity. Now, I can be in a conversation with someone and I can't think of words or the thread we are discussing. This is not brain fog, but a definite dumbing down. I have a heck of a time paying the bills and finding papers I need. I used to be the most organized person there was - could put my hand to a needed file or paper in minutes. I was really bad in the brain dept. shortly after the diagnosis, but over the last 2 years I got some of it back. But, I am far from where I was before the fast downslide. I hope that many people will get involved with this as I think it is a worthwhile project.

armetta - consider co-authoring with someone that has gone through all of this with you (friend/spouse/family member) - someone that can do a bulk of the writing but correlate what you say, etc with their experience of being with you during your trying times. i hope that people with celiac children can do sort of the same thing - speaking about their experience in relation to their children. anyway - not sure if you feel up to it or capable of this - but it is an idea. just a suggestion to think about.

-michelle

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I think this is a WONDERFUL idea and wish I could be a participant. But, I can't. When I post, it takes me so long to compose my postings that several get between who I am responding to. When I got so ill for those many months before my diagnosis, I knew that I had to do everything to keep the vitamins and nutrients in my body. I did not suceed and only after the diagnosis did I realize how the missing vitamins and nutrients affect your brain. I used to be a very intelligent woman with a high IQ and a excellent vocabularity. Now, I can be in a conversation with someone and I can't think of words or the thread we are discussing. This is not brain fog, but a definite dumbing down. I have a heck of a time paying the bills and finding papers I need. I used to be the most organized person there was - could put my hand to a needed file or paper in minutes. I was really bad in the brain dept. shortly after the diagnosis, but over the last 2 years I got some of it back. But, I am far from where I was before the fast downslide. I hope that many people will get involved with this as I think it is a worthwhile project.

Armetta,

From your posts you don't seem "dumbed down" to me. You seem quite intelligent. I definately know how you feel about being unorganized or not all there. I have plenty of days like that. I also put off paying bills because it takes too much concentration and causes headache. I'm tons better after gluten-free but still need much improvement. I'm sure in time these foggy moments will be far and few between but for now from what I can see your vocabulary is fine. :)

Michelle,

I would like to participate but will have to figure out what I want to write about first.


Rachel

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Hello I'm Gary, new to the forums and gluten-free. A.K.A. gluten-free. I got a kick out of your comparison between doctors and accidental gun deaths. You make a good point! Not to Doctor bash, but... I've had a few doozies. When I was 19 I had Mono. I went to the doctor and said "Doc, I think I have Mono-neucleosis." He said No you don't! I'm the doctor here. Sure enough when I didn't get better after about a week I sought another opinion, he did the blood tests and it was confirmed that I had it. In other words, that first Doc couldn't diagnose a disease if it walked in and hit him in the face. (it did, he didn't) Just one in a string.

Needless to say I never went there again. I was in the Hospital for a week and all the kings horses (or horses *%$#@) couldn't put a finger on this celiac disease. I admit it's not an easy job but I think sometimes egos get in the way. Just MHO.

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I admit it's not an easy job but I think sometimes egos get in the way. Just MHO.

Yeah...I agree. They really don't like patients who go in already having an idea of whats wrong. I don't know why but if you tell them what you think is wrong most of the time they'll disagree....but at the same time they don't really try that hard to figure out what it *could* be. This sort of leaves the patient with no other option but to self-diagnose and the vicious cycle continues. This was the case with me anyways...the more I researched the more they despised me. They told me to stop reading books...stop going online...well if it werent for those 2 resources I'd have really been up a creek.


Rachel

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Guest mvaught
Armetta,

From your posts you don't seem "dumbed down" to me. You seem quite intelligent. I definately know how you feel about being unorganized or not all there. I have plenty of days like that. I also put off paying bills because it takes too much concentration and causes headache. I'm tons better after gluten-free but still need much improvement. I'm sure in time these foggy moments will be far and few between but for now from what I can see your vocabulary is fine. :)

Michelle,

I would like to participate but will have to figure out what I want to write about first.

rachel - excellent - looking forward to this. i was hoping that you would want to participate, since you are very good at expressing your opinions and feelings :). fortunately it seems as everyone on this board is good at this - so i am excited to see what is produced.

armetta - btw - i also think your post is very articluate (of course, maybe it is exhausting for you to be articluate - one of my best friends has ms and can be very articluate but on ther verge of making himself sick - so don't want to push you if you don't feel well) and certainly very intelligent =). it would be great to have you voice yourself in this project.

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fortunately it seems as everyone on this board is good at this - so i am excited to see what is produced.

:lol::lol::lol::lol:

That's the understatement of the year!!! LOL! ;):P

Sounds like the idea is gathering steam, mvaught....... :)

I will have to think about what angle I want to take...... right now I am just celebrating the fact that I survived Care Bears Live without any "mishaps", and I'm not talking about the kids!!!!! ;):P

Hugs!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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Maybe I sound articulate, but I have to proof read my postings about three times and I have to change and add things. I won't tell you what my IQ used to be, because it would sound like I was bragging. And I am not. I did not use my intelligence fully in the past, but I did read some very intelligent books and never had to reread a paragraph. I now read mystery fluff (as I call it) and I still have to reread sentences. I really am not complaining as I am just glad that some of my brain came back. I also joke with my husband that it was a good thing I had that extra IQ going for me before I got so sick, otherwise he would probably be tying my shoelaces. :lol::lol:


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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Maybe I sound articulate, but I have to proof read my postings about three times and I have to change and add things. I won't tell you what my IQ used to be, because it would sound like I was bragging. And I am not. I did not use my intelligence fully in the past, but I did read some very intelligent books and never had to reread a paragraph. I now read mystery fluff (as I call it) and I still have to reread sentences. I really am not complaining as I am just glad that some of my brain came back. I also joke with my husband that it was a good thing I had that extra IQ going for me before I got so sick, otherwise he would probably be tying my shoelaces. :lol::lol:

I know all about that. I sometimes need to read and re-read and re-read again before the meaning of a sentence finally soaks through my soggy brain...... It is extremely frustrating sometimes! I wouldn't even have a clue what my IQ is, as I have never had it tested, although it can't be too darn high since I only have Grade 12 education...... Actually, Terry and I fit together really well considering he skipped three grades in school (he's the brilliant one.....) and I only finished high school. Eileen likes to tease me about it, actually. She always says whenever she is amazed I know the answer to something "Well, how do YOU know that, YOU didn't go to college or university!!" <_< I always tell her "Well, pay attention to life around you, it's amazing how many things you can learn!!!!" ;)B)

Armetta, I hope your eyes are feeling better today. Don't overdue it on the computer!!

mvaught, one idea that I have floating around in my head is how, even when you FINALLY get the diagnosis after years of hell, basically, what do you get? You get someone saying, "Okay, go on the gluten-free diet". Then they say "Go see a dietician", who ends up knowing squat about gluten. So, unless you are lucky enough to find a board like this to learn exactly EVERYTHING AND EVERYWHERE that gluten hides, then you pretty much are out of luck. I wonder how many celiacs out there are in the same boat I was at the beginning. I thought, okay, I have stopped eating this, and this, and this, I am staying true to the gluten-free diet. Unfortunately, I was still using the family toaster, getting gluten in OTC meds, toothpaste, etc. etc. The information given to newly diagnosed is woefully inadequate......

There are so many possibilities of angles to take this........ no wonder you are getting excited!

Hugs.

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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mvaught, sign me up. Don't know what I will write about but I'll think of something. My life has literally turned into a rags to riches story since I gave up the gluten with no help from doctors whatsoever.

From what I have read in the time I have been here is that most of us have had very negative experiences with doctors, myself included. There are a few members who have had positive experiences with doctors. I think it is safe to say that most doctors are unwilling or unable to learn or give a rats rear end about celiac. However I do find it encouraging that there are a few really good doctors out there who are knowledgable about celiac. If you are fortunate enough to have one of these doctors please don't make personal attacks on those of us who don't. It is really uncalled for.


If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.

Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?

Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.

Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

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I'm in. Tell me what you need/want and what format, and I'll try to do my best. I'm trying now to develop a "compassion" program for med students here locally. They're always looking for speakers, and I figure a disabled physical therapist is as good as any for rallying the compassion vote!


Lynne

Courage does not always roar. Sometimes it is the quiet voice at the end of the day that says, "I'll try tomorrow".

"There's not a word yet, for old friends we've just met. Part Heaven, part space, or have I found my place? You can just visit, but I plan to stay, I'm going to go back there some day." Gonzo, in the Muppet Movie

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Guest mvaught

Hi everyone - I am thrilled about the already overwhelming response to this idea! Those of you that already have started to post some ideas - they sound great. I'll respond more specifically tomorrow. I will also try to come up with possible topics for consideration (maybe that will help spark some ideas like the threads do). I'll do all of this in a new thread and put a link to it on this one. Keep brainstorming - this is going to be WONDERFUL for us personally, as a community and beyond!!!

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Oh also - i am messaging each of you that has so far indicated interest in the project so we can add each other as PM buddies - this will make it a little easier for me to keep up with everyone.

my husband, brian and i will be emailing our connection tomorrow - so cross your fingers/say a prayer - do whatever you do for some luck. we are confident about this - but we need this guy's help to really get noticed in the academic community.

if you are interested in an auto-ethnographic piece for an idea of things others have done check out "Final Negotiations: A Story of Love, Loss and Chronic Illness" by carolyn ellis (probably the most famous auto-ethnograpic piece ever written - sad, though - about her experiece of her husband having and dying from emphysema)...she was a student of our connection.

more tomorrow!

thanks everyone - Michelle

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I am out of here. You have the floor.

NOTE to those who who start a new thread about not liking doctors: please label the title as such so that it can't be misinterpreted as a different subject.

Michelle - That's a nice offer.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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I am really new here, just 10 days gluten free, but I, my family and friends literally cannot believe the change already. I was so severely malnourished that I could hardly perform the most simple and basic tasks. My "brain fog" was debilitating, to the extent that I lost jobs, relationships, and most of my former self, as the list of things I "used to do" grew increasingly long, while time spent inert and on the couch grew longer......I thought this was how I'd spend the rest of my pitiful life, that this was my personality and temperament, that I was just chronically exhausted and miserable with no cure. Getting out of bed became nearly impossible, even after 10 hours of sleep; depression and fatigue consumed me. Evidently I was gluten-intolerant for most or even all of my life, and developed celiac disease in the last few years, never even knew....thought the bowel issues were just from nerves and the mounting depression/anxiety in my life. As my anemia became increasingly alarming, my hair fell our in handfuls, and my appearance, withered, my wonderful doctor sent me to a GI who immediately suspected celiac disease, and confirmed through blood tests and endoscopy/biopsy.....and I entered into the surreal world of gluten-free living.

I feel silly posting as it's been so short a time, and I'm pinching myself....but to be 44 years old, and have your head clear up, regain the spring in your step, pop out of bed in the morning, and find a smile on your face....to have the ability to find joy in so short a time, to take pleasure in projects again (I detailed my car this weekend, have not done that to a car in 10 years, and it was FUN :) ).....words cannot express what this diagnosis has done for me. I have been on DISABILITY for severe bipolar depression and panic disorder, ADHD, you name it, struggling to work part-time and wondering how I"d EVER find full-time, meaningful employment again....it may now be possible after all.

This is an answer to prayer, and as I wept in my GI's office about this diagnosis, he smiled gently and said, "I'm doing you a favor." I didn't see it then, two weeks ago.....but it feels like a lifetime ago already.

I am excited about your project, Michelle (I think that's your name!), and would love to help in any way, after getting more time gluten-free under my belt, of course.....

God bless -

Susan


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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Guest mvaught
I am really new here, just 10 days gluten free, but I, my family and friends literally cannot believe the change already. I was so severely malnourished that I could hardly perform the most simple and basic tasks. My "brain fog" was debilitating, to the extent that I lost jobs, relationships, and most of my former self, as the list of things I "used to do" grew increasingly long, while time spent inert and on the couch grew longer......I thought this was how I'd spend the rest of my pitiful life, that this was my personality and temperament, that I was just chronically exhausted and miserable with no cure. Getting out of bed became nearly impossible, even after 10 hours of sleep; depression and fatigue consumed me. Evidently I was gluten-intolerant for most or even all of my life, and developed celiac disease in the last few years, never even knew....thought the bowel issues were just from nerves and the mounting depression/anxiety in my life. As my anemia became increasingly alarming, my hair fell our in handfuls, and my appearance, withered, my wonderful doctor sent me to a GI who immediately suspected celiac disease, and confirmed through blood tests and endoscopy/biopsy.....and I entered into the surreal world of gluten-free living.

I feel silly posting as it's been so short a time, and I'm pinching myself....but to be 44 years old, and have your head clear up, regain the spring in your step, pop out of bed in the morning, and find a smile on your face....to have the ability to find joy in so short a time, to take pleasure in projects again (I detailed my car this weekend, have not done that to a car in 10 years, and it was FUN :) ).....words cannot express what this diagnosis has done for me. I have been on DISABILITY for severe bipolar depression and panic disorder, ADHD, you name it, struggling to work part-time and wondering how I"d EVER find full-time, meaningful employment again....it may now be possible after all.

This is an answer to prayer, and as I wept in my GI's office about this diagnosis, he smiled gently and said, "I'm doing you a favor." I didn't see it then, two weeks ago.....but it feels like a lifetime ago already.

I am excited about your project, Michelle (I think that's your name!), and would love to help in any way, after getting more time gluten-free under my belt, of course.....

God bless -

Susan

Susan - you shouldn't feel silly about posting - many of us on this site have experiences like yours (not finding out about celiac or having trouble with diagnosis)....we are just glad you can join in! This is a great site - I love it! Please post on the thread for the book idea (I will also PM you). You don't need more experience than what you have - there are a number of topics (on the thread I listed a bunch of suggestions). Anyway, it seems like your experience with employment and dealing with illness'disability would be a wonderful topic. Again please see the thread. and again as well - glad you found us!!!

-michelle (yes, that is my name)

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Regarding Doctors:

There is a doctor advertising on this site. His name is Dr. Skip Snow. He says, in his site that he can and does cure Celiac disease, :D as well as other diseases. It will cost me a lot of money, that I don't have, in order to try him :( . Has anyone had any experience with him? Any success or failure to report? Thanks, Bob

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Regarding Doctors:

There is a doctor advertising on this site. His name is Dr. Skip Snow. He says, in his site that he can and does cure Celiac disease, biggrin.gif as well as other diseases. It will cost me a lot of money, that I don't have, in order to try him sad.gif . Has anyone had any experience with him? Any success or failure to report? Thanks, Bob

I haven't seen the advertisement on this site for that doctor. You may have just misworded it, but are you saying that he actually claims to "cure" celiac? Curing it is absolutely impossible no matter what anyone tells you (at least at this point in time). There are hoaxes all over for pills that allow you to eat gluten without getting sick and the like, but all will end in villous atrophy and are not medically supported--they do not work. So if it just says he's a good doctor, then all right-- but curing is impossible so don't waste your time with doctors crazy enough to make that claim. Others will attest to the same thing.....

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Regarding Doctors:

There is a doctor advertising on this site. His name is Dr. Skip Snow. He says, in his site that he can and does cure Celiac disease, :D as well as other diseases. It will cost me a lot of money, that I don't have, in order to try him :( . Has anyone had any experience with him? Any success or failure to report? Thanks, Bob

I haven't been able to find this advertisement you claim is on this site ANYWHERE. I have done a search under "Dr" "Doctor" "Skip" "Snow", nothing comes up. Please post where you saw this on this site. Oh, and guys, don't bother googling his name up, I did, and he claims to be able to cure just about "all" gastro problems..... Quack.

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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There's another thread about this doctor under the "Doctor" category -- I strongly recommend that you read it! I think this guy is a snake oil salesman. . . . Lynne


Lynne

Courage does not always roar. Sometimes it is the quiet voice at the end of the day that says, "I'll try tomorrow".

"There's not a word yet, for old friends we've just met. Part Heaven, part space, or have I found my place? You can just visit, but I plan to stay, I'm going to go back there some day." Gonzo, in the Muppet Movie

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