Jump to content





   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Celiac Vaccine Anyone?


  • Please log in to reply

45 replies to this topic

#31 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,550 posts
 

Posted 20 May 2011 - 06:28 AM

Yep. I don't think celiac is on the rise though, I think it has been around a long time but instead of diagnosing us with x number of different things people and doctors are becoming more aware and some folks, thanks to this computer age are going into their doctors offices and demanding testing instead of being content to accept IBS and other diagnsoses.
Once we are diagnosed and on the diet when all the other diseases and disorders 'go away' suddenly we have a healthy person who only needs an occasional doctors visit.
Look how much they lost off just my diagnosis, I now take only one generic script for something that isn't celiac related at about 10 bucks a month. I haven't even had a cold since diagnosed and at most have seen a doctor once or twice a year. In just the year before diagnosis my COPAYS for tests, doctors and drugs came to over $17,000 not including what the insurance company paid.
Big Pharma is big business in this country and the more of us diagnosed the less they make. Of course they are going to try and develop some sort of 'treatment' or 'vaccine' for it. They are losing thousands of dollars with each person diagnosed and recovered. Will it be rushed into production to regain some of those lost dollars, I really hope not.



Agree totally! As I said, no one makes money if we are all healthy. :rolleyes:

Celiac isn't a "new " disease (genetic predisposition suggests generations of it--it was just undiagnosed) or "on the rise"...it is that people are being diagnosed properly (finally!)

We spent over $40K out of pocket (never added up what the insurance covered--cannot imagine!!) trying to get answers and relieve my pain. Because I had so much joint/bone/muscle and burning nerve pain along with dozens of other symptoms besides the Gut stuff, like severe brain fog ....I wasn't looking at celiac myself at first. And even when I thought that was what I had, no one agreed. Why?

The public opinion of Celiac disease is "skinny people with smelly floating stools"....(just googling it will give you a limited list of symptoms-not the ones we all have experienced (neurological, dermatological, endocrine system, etc...)

The vast number of people with extra-intestinal symptoms on this website alone was what solidified for me what I had suspected all along. I kept googling my symptoms and every time, a post on this site popped up. For example, I told Ravenwoodglass (and a few others on here) that I knew what I had from reading their posts because her story so closely matched mine!!

So, we go to the doctors with the myriad of symptoms we have and we are met with rolled eyes and the bubble over the head that reads "this person is a nut job/hypochondriac." Here, take this drug and this drug and go see this specialist and I'll see you in a month .....cha-ching! $$$ made ....and the patient?? still sick and anxious and in pain!! And drugged out of their heads. They "symptom treat"....It perpetuates a sick society.

Before DX...I had been to 3 neurologists, 2 endocrinologists, 3 rheumatologists, a dermatologist, a gastroenterologist, a “woman's health specialist”, an allergist, and a urogynecologist. I had almost every test imaginable: EMGs for the nerve pain; I wore a holter monitor for the heart palpitations; I had glucose testing, adrenal function testing, and had 2 different EKGs run for the heart and chest pain and rapid or erratic heartbeat. Had dozens of blood panels run for Lyme disease, lupus, rheumatoid arthritis, and was screened for MS. There were MRIs of the brain, neck, shoulder, lumbar spine, bone density scans and mammograms. I was scoped both ways and my abdomen CT-scanned and X-rayed. Frankly, after all those tests, I am surprised I do not glow in the dark from radiation.

To try and alleviate the constant pain, I have tried everything: myofascial release therapy, biofeedback, 3 acupuncturists, 3 chiropractors, 8 massage therapists, 5 physical therapists, and 2 physiatrists (pain management doctors). I live in NYS, and we traveled to a pain clinic in Massachusetts and to a dentist in New Jersey who specializes in facial, jaw and head pain. I even went to a “rolfer “(google that one!) and a Reiki master. My devoted husband would have taken me to the moon if he thought it would help. Insurance did not cover most of that, but when you are desperate for relief, you will try anything.
I even went to a Naturopath and took dozens of supplements.

Money spent in vain, years LOST...when all along, it was the FOOD I was eating. If ONE doctor had recognized the symptoms of celiac disease, I would have been spared so much misery.

My "CURE"...avoiding gluten. There's your answer...Free! No charge!!

The irony of all this? One $149. genetic test confirmed what I already knew. :blink:

There needs to be a better understanding of this disease. For starters, it is NOT an allergy (I cringe when people say that) and it can be devastating and someone doesn't even have to have the tell-tale gut/bowel issues. Silent celiac is frightening! Even after diagnosis, doctors (and others) say "oh just avoid gluten, you'll be fine"... :blink: they have NO CLUE what's involved in recovering full body and brain function! NO CLUE what body systems have taken a hit and what vitamin and mineral deficiencies and bone loss we have suffered.Even after DX, I had to go back and TELL my doctor what tests to run to find the folate deficiency and loss of bone density I had! I'll be in physical therapy for a year to regain lost muscle mass and strength and mobility.

For pete's sake...who's the med school grad here??? Again, if I had not READ so much, I still would be floundering around, in a wheelchair or a mental health ward.

But only a "gluten-savvy" doctor is going to recognize the symptoms and that will only happen if there is more emphasis on EDUCATING them, instead of coming up with new drugs or vaccines that will NOT solve the huge problem in this country--a nation of sick people who are mainly gluten intolerant.

Just my two cents! ;) sorry, guys....I don't know where all that "rant" came from.... :unsure:
whew...... :P
  • 2

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


Celiac.com Sponsor:

#32 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,550 posts
 

Posted 20 May 2011 - 06:50 AM

I don't trust the researchers to be thorough in what they consider symptoms. We all know that celiac presents in many symptoms that are not gut related. Asthma, sinus infections, ataxia, joint pain, anxiety attacks, feeling on edge, brain fog, skin rash, dry skin, inability to lose weight, Bulimia (yes my bulimia went away on its own after going gluten free) and some others I'm forgetting were all my symptoms in addition to the D, C and V and gut pain, etc. I think they will ONLY look at gut pain and then say "See it works!" but in reality the celiacs will suffer from all these other symptoms that will not be attributed to their celiac.


YES!!!!
here's a perfect example to illustrate what I ranted about above...check out this article posted today by admin..

http://www.celiac.co...lingham-herald/

Where does this writer mention the EXTRA-INTESTINAL symptoms we all suffer??

arrgh!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#33 cassP

 
cassP

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,655 posts
 

Posted 20 May 2011 - 07:11 AM

let me first say- that i so agree with everything everyone's posted- great great points- and i find that the members on here seem more in tune than on other health forums (particularly some thyroid forums im in).

but- i DO think Celiac will continue to be "on the rise". of course it's been here forever- it's been in a population of the genes since the beginning of time. and i also agree- that it does not mean our genes our inferior- just that we were not designed to partake in this poison. but i definitely believe it will rise from the 1 in 133, because of the condition of our food & environment.. the triggers our multiplying. that's my view, and my Gi actually theorized the same- saying he wouldnt be surprised if sometime in the future- more of the genetically prone/sensitive 30% start expressing the disease.
  • 3
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#34 mommida

 
mommida

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,933 posts
 

Posted 20 May 2011 - 07:56 AM

From the article description of the dosage trials, in my daughter's case the vaccine could do more harm than good.
She has DQ2 and DQ8 and has been diagnosed with Eosinophilic Esophagitus. Any time she has started vomitting it gets really bad. Hospitalization bad. Not to mention the other food restrictions and possible airborn triggers she has to avoid. All ingredients in the vaccine will have to be looked at as it seems Celiacs have sensitivities/intolerances to other ingredients too.

So what about the "unknown" Celiac gene carriers?
DQ2 and DQ8 patients?
What does this do to a body's overall immune system?
Is it really just going to mask "symptoms"?

As much as I miss eating with out thinking, planning, checking ingredients, and schelping around with a food bag I know it could be soo much worse. I complain about paying more for some gluten free foods. I haven't had to compare it to major pharma drug prescription(s) costs. (except Synthroid)
  • 1
Michigan

#35 chasbari

 
chasbari

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 391 posts
 

Posted 20 May 2011 - 09:01 AM

I do think that not only is diagnosis on the rise but that the actual manifestation of it is also on the rise. It is possible to have the genes and never manifest as having the disease. I think that several things play into this. Look at the purposeful increase in gluten content of wheat and wheat flour over the last century as one factor. I also hearken to the discussion on antibiotics being a trigger for so many celiac sufferers. When you consider that in my lifetime we went from a handful of relatively mild antibiotics to super drugs, almost all which are prescribed without any lab culture to verify the efficacy of even using them in the first place, and you look at the impact the use of these have on the health of the gut flora which helps to mediate protection and healthy operation of the gut, it becomes easy to see a connection to antibiotic overuse and the explosion of autoimmune issues, celiac included. When you also consider that virtually no health professional recommends follow up probiotic strategies following antibiotic dosing and that the commercially hyped yogurts are basically full of sugars and other garbage that make them largely counterproductive anyway, we are in a lose/lose scenario unless stepping outside of the commercially available food sources. All, of course, IMHO.
  • 2

#36 lovegrov

 
lovegrov

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,537 posts
 

Posted 20 May 2011 - 09:19 AM

Folks, recent research suggests that celiac disease is INDEED on the rise. There are simply more cases of it than there sued to be:

"To determine when the prevalence of celiac disease started to increase, researchers at the Mayo Clinic analyzed blood samples stored from Air Force recruits taken in the early 1950's, and compared them with blood samples from this decade. Expecting to see at least 1% of the samples come up positive for gluten antibodies, they were surprised to find the numbers were much smaller than anticipated. The results of these studies suggest that until the 1950's, celiac disease was extremely rare. From these findings, researchers determined that celiac disease is about 4 times more prevalent now, than it was in the 1950's, suggesting an environmental change to the grains happened in the 1950's."

http://www.celiac.co...Rise/Page1.html

richard
  • 1

#37 rdunbar

 
rdunbar

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 225 posts
 

Posted 20 May 2011 - 09:27 AM

let me first say- that i so agree with everything everyone's posted- great great points- and i find that the members on here seem more in tune than on other health forums (particularly some thyroid forums im in).

but- i DO think Celiac will continue to be "on the rise". of course it's been here forever- it's been in a population of the genes since the beginning of time. and i also agree- that it does not mean our genes our inferior- just that we were not designed to partake in this poison. but i definitely believe it will rise from the 1 in 133, because of the condition of our food & environment.. the triggers our multiplying. that's my view, and my Gi actually theorized the same- saying he wouldnt be surprised if sometime in the future- more of the genetically prone/sensitive 30% start expressing the disease.


I was being snarky about the 'inferior genes'. it's just that that is what is being implied by the medical establishment, even by the term 'gluten-intolerant'. I don't believe there is such a thing as inferior genes, let me be clear. that's nazi talk, and quackery.
the official story about celiac points the finger at you for reacting, instead of at gluten.
why not say that others are 'gluten-resistant'? , and that we are just normal? and whats up with the story that it's an 'autoimmune disease w/ an environmental trigger', which makes little sense to me.
isn't the environmental trigger (gluten) obviously the one at fault, not our genes?? so, in that case, it's not so much a disease as just what happens to you when you get poisined. If you remove the trigger, there is no disease, only a specific gene. >if gluten never existed, celiac would never exist, end of story<
so, if i drink hemlock, and die, it was because i had a disease w/ an environmental trigger? think about it, it's just a fancy way of saying you got poisined.
I trust God knew what he/she was doing when we were concieved, and that our genes are just fine.
it's just semantics, but the point is that the semantics get used to train people to view gluten as the victim, not the culprit.
and thats whats happening when someone suggests a vaccine, or stem cells to fix the problem.
it shifts the blame to you, and your genetics, and the concern seems to be to not tarnish glutens image, and to keep everyone consuming it. (glutens great!! you haven't had the vaccine??); it's apologizing for gluten, which has been proven to cause inflammation in everyone across the board, not just celiacs, or gluten-intolerants. (Robb Wolf)
yes, profit is a part of the motivation, but i believe it's also to make ppl sick, shorten their life spans, make them infertile, and dumb them down. Eugenicists have focused on this task unashamedly; Hitler was a spin off of these folks, (like John Kellogg who promoted and funded eugenics, and invented granola, and breakfast cereal).
nowadays, theres also aspartame (which i am shocked is even legal, it's so dangerous), and floride to do the job, too.

i was being snarky about the mercury, too. but it is in vaccines. can you imagine giving that to a child??
  • 1

#38 Coleslawcat

 
Coleslawcat

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 157 posts
 

Posted 20 May 2011 - 10:13 AM

Guess I'm in the minority, but I'm grateful that medical researchers aren't ignoring celiac and looking for treatments beyond the gluten free diet. We all know that it's impossible to avoid a little gluten from CC now and then. I like my gluten free foods, I can bake a pretty mean gluten free cake, I will eat gluten free for my health, but none of that means I'm happy about it and wish there wasn't a way to stop my body from having an abnormal autoimmune response.
  • 0

#39 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,550 posts
 

Posted 20 May 2011 - 10:15 AM

I wish to clarify something I said...I think the incidence of celiac IS on the rise due to many variables, including environmental triggers, but the INCREASE IN DIAGNOSES has come from the ability of people to RECOGNIZE the disease as it manifests, especially in adults who present with symptoms that are not just gastrointestinal but also Extra-intestinal. Years ago, they believed babies "would grow out of celiac"...they could go back to eating gluten grains and be all right. Those people were just set up for a lifetime of illness. Others, like me, had "clues" all of our lives but no one picked up on them. Knowledge is key.

That 1 in 133 number is going to change, no doubt...

As for the idea that it has increased since the 50's (the article mentioned by Richard above) makes me think about that "delicious" white Wonder Bread we all ate growing up !! :blink: I noticed that the highest number of newly diagnosed celiacs are now in their 50's and 60's....not to mention the glut of breakfast cereals, cookies, packages foods, etc. on the market.......again, were all of us just "celiacs in the making" ??

Maybe we are all "predisposed to gluten sensitivity" (like some "paleos" suggest)and the "trigger " just needs to be pushed.

Just my humble opinion, of course!

It's an interesting topic and I appreciate hearing all these ideas. Thanks, Tigercat for posting in the first place!!
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#40 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,741 posts
 

Posted 20 May 2011 - 11:08 AM

Folks, recent research suggests that celiac disease is INDEED on the rise. There are simply more cases of it than there sued to be:

"To determine when the prevalence of celiac disease started to increase, researchers at the Mayo Clinic analyzed blood samples stored from Air Force recruits taken in the early 1950's, and compared them with blood samples from this decade. Expecting to see at least 1% of the samples come up positive for gluten antibodies, they were surprised to find the numbers were much smaller than anticipated. The results of these studies suggest that until the 1950's, celiac disease was extremely rare. From these findings, researchers determined that celiac disease is about 4 times more prevalent now, than it was in the 1950's, suggesting an environmental change to the grains happened in the 1950's."

http://www.celiac.co...Rise/Page1.html

richard


I think a lot of that rise has to do with how we have been eating since the 70's on. When I was growing up in the 50's and 60's much of most peoples diets were from whole food. Beginning in the 70's I think we have gone to much more processed and convience food and much of that has gluten in it in one form or another. Add to that the development of higher gluten wheat and other factors like a more stressful general lifestyle and you have an increase in people who are genetically predisposed having celiac triggered.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#41 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,741 posts
 

Posted 20 May 2011 - 11:13 AM

the official story about celiac points the finger at you for reacting, instead of at gluten.
why not say that others are 'gluten-resistant'? , and that we are just normal? and whats up with the story that it's an 'autoimmune disease w/ an environmental trigger', which makes little sense to me.
isn't the environmental trigger (gluten) obviously the one at fault, not our genes?? so, in that case, it's not so much a disease as just what happens to you when you get poisined. If you remove the trigger, there is no disease, only a specific gene. >if gluten never existed, celiac would never exist, end of story<


I have to agree with you. That is why I prefer to think of celiac as a genetic difference rather than a disease. I am not diseased gluten is just a poison to my system.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#42 chasbari

 
chasbari

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 391 posts
 

Posted 20 May 2011 - 11:22 AM

My understanding is there are people with the celiac gene who are able to eat gluten for a time without having any symptoms whatsoever. It is only after an environmental trigger, and there happens to be a whole discussion with pretty convincing anecdotal evidence linked to antibiotic use for one, that many here began to have full blown celiac symptoms. Please don't use the God argument as it then puts you in the position of sounding like you are suggesting that none of us who are trying to follow the science believe in God. I personally think that even if we are able to figure out some small element of this that we do only see the whole picture in a mirror dimly FWIW and IMHO. I am very much a whole raw foods advocate as I do think this is much more in line with what was intended. I have had great success with my gut flora experiment. Moreover, I was horrified but relieved to read here:
Faustman studies

As noted earlier that not only are they looking at this for diabetes but the paragraph about Enbrel made my skin crawl. It was given to me for my RA and I stopped taking it because at a gut level I was certain I had just made a deal with the devil. I now have a whole host of autoimmune diseases, celiac included. Thanks modern medical industrial complex. And to think, Eisenhower was only worried about the military industrial complex.
  • 0

#43 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,550 posts
 

Posted 20 May 2011 - 11:57 AM

That is why I prefer to think of celiac as a genetic difference rather than a disease. I am not diseased gluten is just a poison to my system.



Ditto...and amen to that, sister! ;)
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#44 thleensd

 
thleensd

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 216 posts
 

Posted 20 May 2011 - 08:17 PM

. . .The irony of all this? One $149. genetic test confirmed what I already knew. :blink:

There needs to be a better understanding of this disease. For starters, it is NOT an allergy (I cringe when people say that) and it can be devastating and someone doesn't even have to have the tell-tale gut/bowel issues. Silent celiac is frightening! Even after diagnosis, doctors (and others) say "oh just avoid gluten, you'll be fine"... :blink: they have NO CLUE what's involved in recovering full body and brain function! NO CLUE what body systems have taken a hit and what vitamin and mineral deficiencies and bone loss we have suffered.Even after DX, I had to go back and TELL my doctor what tests to run to find the folate deficiency and loss of bone density I had! I'll be in physical therapy for a year to regain lost muscle mass and strength and mobility.

For pete's sake...who's the med school grad here??? Again, if I had not READ so much, I still would be floundering around, in a wheelchair or a mental health ward.

But only a "gluten-savvy" doctor is going to recognize the symptoms and that will only happen if there is more emphasis on EDUCATING them, instead of coming up with new drugs or vaccines that will NOT solve the huge problem in this country--a nation of sick people who are mainly gluten intolerant.

Just my two cents! ;) sorry, guys....I don't know where all that "rant" came from.... :unsure:
whew...... :P


Preach it, girl! Seriously, this is so familiar to me. Gah.... :angry: (Curious how your physical therapy is going, or if you're still in it. I go just about every week.)

I'm fascinated by this thread in part because of how emotionally so many of us respond to the modern medicine quick fix. Don't get me wrong, if I have appendicitis or a broken leg, I'll be first in line at the doc's...but I've been burned by the influence of drug-pushing physicians. Those drugs made me worse more often than better. When I was at my worst right before I was diagnosed, my doc don't me the GI department "wouldn't even talk to me" unless I took Prilosec for two weeks. Since I wasn't assimilating nutrients properly at that time (read: starving), that "safe" drug pretty much made it impossible for food to break down. Fortunately, I only took it for a couple days.

There would have to be a LOT of explanation and testing before I would even BEGIN to consider a "vaccine" like this one.

While I'm sure that there are a lot of medical researchers out there that truly want to help, it's not the individuals that are the issue... it's the surrounding system and where the money comes from. Then docs are rushed through their patients each day and pushed to give them quick fix drugs, knowing very little about nutrition (unless they personally choose to research it).
  • 2
Diagnosed 2/12/09 by biopsy after years of anemia, neuropathy, dizziness, brain fog, pain and more.
Negative blood tests (following gluten light diet)

Still healing with time, harmony, and good food.
Grain-free 1/11/11

Blogging Gluten-Free

#45 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,550 posts
 

Posted 21 May 2011 - 05:47 AM

Preach it, girl! Seriously, this is so familiar to me. Gah.... :angry: (Curious how your physical therapy is going, or if you're still in it. I go just about every week.)


While I'm sure that there are a lot of medical researchers out there that truly want to help, it's not the individuals that are the issue... it's the surrounding system and where the money comes from. Then docs are rushed through their patients each day and pushed to give them quick fix drugs, knowing very little about nutrition (unless they personally choose to research it).



Twice a week. I see one specialist PT (for the pelvic floor dysfunction) and another PT for the rest of me. Every muscle, tendon, ligament and the fascia is affected. My bones hurt. The cat sitting on my legs is too much for me! :blink: The PT is grueling, but I do it because I will not let this beat me. Plus, at-home stretches and exercises and gentle strengthening. If I try to push it, I suffer setbacks. My muscles are wasted.

This is what inflammation and being ignored by doctors (or getting the "catch-all" fibro DX) will bring you. I was offered anti-depressants and pain pills, NSAIDs, muscle relaxers and sleep meds...they made things worse and further irritated my GI tract. I just stopped taking everything. I got the same rap as you did..take the Prilosec and the Carafate and you'll be fine...fine? I withered down 90 lbs.... :huh:

When this came on, I was head-to-toe burning and immobilized.I could not walk the length of my driveway or get in and out of the shower or get dressed without help. I cannot sit, lie down or walk without pain. But, it's slowly getting better. I am not the only one with this!!!--several on here have told me similar stories, and they got better. :) I remain hopeful.

The one truthful thing I heard from a doctor in all of this? He said..."They don't spend a lot of time talking about nutrition in med school..."

The one person who did ask me "what do you eat?" was an acupuncturist/nutritionist with 25 years of experience --and he mentioned "gluten" to me back in 2008. I had no clue what he was talking about :blink: ....I recently emailed him and told him he was right and he said he was not surprised as the majority of his clients cannot digest gluten or dairy and they come to him with so many issues,like anxiety, insomnia, fatigue, gut problems and lots of pain. (sound familiar, gang??)

Like a said, we are a nation of sick people, perpetuated by the food we eat and the doctors who "symptom treat". The cycle needs to be broken.
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: