Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Celiac Vaccine Anyone?
0

46 posts in this topic

Well I had a little more time today to look at the article. First off they only used 34 people for the study and a fairly high percentage of those had side effects. Also they appear to only be looking at GI symptoms so who knows what is going on in the rest of the body systems. What exactly are they vaccinating against? Celiac is autoimmune it is not like smallpox or polio it is a genetic difference. I think they are misusing the term vaccine it seems to me this is more of a treatment that they will look to sell to folks with celiac associated genes before symptoms arise.

I'm not a medical researcher but do work on medical devices sometimes and I know a lot of medical researchers. Researchers are almost always principally motivated by the scientific and medical challenges along with the prospect of doing good in the world. Sure, some might get rich here and there but the vast majority never will. It looks like the Nexvac2 would work like an allergy shot - as long as you keep taking it the idea is the celiac gluten response would be suppressed. Would I take it? as a newly diagnosed person I would be hesitant. Maybe as a hedge against cross contamination but I wouldn't want to rely on an expensive shot to be healthy. Unlike other autoimmune problems (lupus, diabetes, etc) there's a clear solution: no gluten!

You can read the company's summary here: http://www.nexpep.com/coeliacdiseasevaccine/Nexvax2.aspx

They did a Phase I trial. The next step will be a Phase IIa trial which will determine safe dosing ranges. That's followed by a IIb trial which determines if the safe dosing has the desired effect. A wider range of side effects should be considered in the Ph II testing.

If all that works than they'll get a massive amount of funding from a big Pharma co. and go into a Ph III trial which would involve a lot of patients and take a very long time. Nexpep claims it'll be on the market in 2017, that seems optimistic to me.

As for the profit motive: let's see...1% of the US population is 3 million people. Weekly or monthly doses, call it 40 doses each annually. 120 million total doses annually, at what, $50 each?? FOR LIFE. Hey that's $6 billion in revenue for 25 years until the patent expires! There's the motivation for the business and finance people. Actually that could be such a huge moneymaker that I'd be very nervous about trying this drug until it's been on the market for many years.

You want to really see red go look up Denise Faustman, who is working to cure Type I diabetes with an inexpensive generic drug used to treat tuberculosis and some forms of cancer. No NIH or other federal $, the JDRF attacked her research (until they sponsored 3 rival researchers, who all confirmed her results!), no drug companies support it. Curing Type I would ruin a lot of investment in insulin production...

2

Share this post


Link to post
Share on other sites


Ads by Google:

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.

Vaccines are big business and it will be very profitable for them to convince you that you're cured whether you really are or not.

So it's a gigantic NO for me. They can shove their vaccine where the sun don't shine because I don't trust them to be truthful and thorough, not one bit.

2

Share this post


Link to post
Share on other sites

reminds me of a comment a Harvard "educated" doctor made at a lecture i attended recently. she speculated whether stem cell research could get us around this little celiac problem.

i was outraged, but did'nt say anything. it seemed like she was implying that the problem isn't gluten. gluten is just fine, minding it's own buisness.

the problem is us; our 'faulty' genes.

maybe I should just be replaced by a stem cell generated genetically superior version of me, so that gluten can be safe to walk the streets.

this is the same woman who brought a gluten Burrito with her and ate it during the lecture, which i posted about.

maybe they can come up with a vaccine to make my eyes blue, instead of brown, or make me blonde too.

oh, and make sure to put some mercury in it, too.

I'm convinced that the medical establishment selectively looks the other way when it comes to the obvious across the board ill effects of gluten, which behind the scenes they are well aware of. they are complicit in what amounts to a eugenic program, and slowly killing people with wheat is a part of that program. (aspartame is somehow legal)

it seems to me that the mainstrean "gluten free' trend is about making sure people get enough trace gluten to get that job done, even if they wake up, and realize that gluten is bad, it can still be snuck in there.

the eugenicists want us eating gluten free food that has trace gluten, not zero gluten food.

seems to me that if a vaccine does emerge, that it might not be that trustworthy.

the people that develop such things don't have my health and well being in mind at all.

it's about making sure that gluten keeps marching along, and that no one gets out of line.

I've been doing some research into the history of eugenics, and 'health food', and want to write an article about what i've been finding about the connection.

it's pretty chilling.

I don't think it's a coincidence that what i thought was health food my whole life is anything but.

2

Share this post


Link to post
Share on other sites

It is all about the BIG BUCK in this country and since celiac disease is on the rise someone wants to make a profit on it. :P

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.

0

Share this post


Link to post
Share on other sites

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.

You are so right Ravenwoodglass! Yes, I do think celiac disease has been around for a long time and people were and still are being just misdiagnosed. It's a shame really... Personally I don't think anyone should eat gluten and even though this diet is a pain in the butt (just because they put gluten in almost everything :angry: ),I consider myself very blessed that I got diagnosed with celiac disease. I see so many of my family and friends so unhealthy with diseases from acid reflux to other autioimmune disease which I really think could be helped with a gluten free diet, but no one wants to hear it. The doctors and Pharmaceutical companies are making so much money from all the diseases. It's really upsetting.

I too, haven't had a cold since being diagnosed. Before I was getting sinus infections along bronchitis four times a year. And what's even more upsetting is the infertility and thyroid cancer that I'm sure was caused by undiagnosed celiac disease. Now, the only time I get sick is because of gluten cross contamination.

0

Share this post


Link to post
Share on other sites




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

Share this post


Link to post
Share on other sites

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..

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

arrgh!

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.com/articles/22252/1/Celiac-Disease-Diagnoses-On-the-Rise/Page1.html

richard

1

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.com/articles/22252/1/Celiac-Disease-Diagnoses-On-the-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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

. . .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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,345
    • Total Posts
      920,488
  • Topics

  • Posts

    • Karen, the iodine test was a test for DH used in the 'olden' days. Iodine would be swabbed onto a spot and then it would be covered with a bandage. If someone had DH the iodined area would break out in lesions. I don't know how but we do know iodine can activate the antibodies. That is why some of us with DH have to avoid iodine in foods until the antibodies have cleared the dermis. OP, if you haven't been tested for celiac you should be and if you have active lesions a biopsy done next to a lesion by a DH knowledgable dermatologist may help in diagnosis.
    • The gluten-free diet (GFD) is the only validated treatment for celiac disease (celiac disease), but despite strict adherence, complete mucosal recovery is rarely ... View the full article
    • What's an " iodine test"?  Haven't heard doctors doing that to diagnose DH.
    • Hello! I've just been given my blood results and told they are highly suggestive of coeliacs but will have to wait till next month to see the gastroenterologist and who knows how much longer for a biopsy. My igA, igG and tissuetrans igA were all over 250 and tissuetrans igG was the only one that was normal. These results don't mean much to me yet but I'm told they are very high. I'm now quite fearful of how much damage I've gone to myself. I've had stomach problems for 25 years (just turned 40) and have often steered clear of too much bread and pasta for how bloated it made me feel but the symptoms were always vague and inconsistent so I kept eating. I had a couple of boats of gastro in the past few months (thanks kids) which I took a lot longer than normal to recover from which looking back may have been related. Then last Friday I had a blowout with wine, cheese, crackers, pizza and chocolate cake. I'm sure I've probably had blowouts like that before but I have never felt so sick before and am still slowly recovering. This is what finally prompted me to go back to my GP after being fobbed off so many times over the years. So I guess my question and my concern is whether there is still  chance of a false positive with levels like this? I worry what else it might be if not coeliac. I'm also worried that I may have done so much damage to myself that I will have several disorders going on! I'm also still recovering from last Friday and wondering when I'm going to feel better. I've stayed off gluten and dairy since my blood result a couple of days ago but feel like I'm allergic to food in general.  Thankyou!!    
    • Here's what the Klondike Bar makers say on the FAQ page of their website (August 2016): Are your products gluten free? Nope. They are not. We have not validated for gluten free. We do not operate allergen-free manufacturing sites, however we do have allergen management programs in all our facilities. The intent of these programs is to avoid unintentional cross-contamination of allergens between products. Our product labels adhere to the FDA’s strict regulations regarding declaration of ingredients and allergens. We do not use the terms “Natural” or “Artificial Flavorings” to hide the existence of any allergens. RECIPES CAN CHANGE. We strongly recommend that allergic consumers refer to ingredient declarations EVERY TIME they purchase processed foods.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,415
    • Most Online
      1,763

    Newest Member
    Ails123
    Joined