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The New Celiac Drug Is Out There


gatita

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Gemini Experienced

I agree, Lisa. I was a bit taken aback when she was describing her life as a "living hell" just because she couldn't eat bread... Huh.

The only drug I would consider would be one where they could "turn off" my immune response to gluten - without any side effects. It would be nice to have something I could take when travelling or staying with people so I wouldn't have to worry about cc so much, but it would have to have zero side effects for me to consider it... It is not that hard to pack myself a cooler when I travel.

I am not sure how raising flattened villi from the dead would work... Zombie villi. LOL ;)

I agree, Nicole.  I could not get past the first couple of paragraphs because the woman interviewed and taking the drug just came off as such a whiny b--ch!  She's been eating gluten free crap for the past 10 years?  She has problems much deeper than just having Celiac and they are obviously in her head. 

 

I have no interest in this junk.  The only thing that would pique my interest is something that would protect against cc while I travel.  I do a pretty good job when I am on vacation but it would be nice to have back-up, even while eating gluten free.


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Tbolt47 Newbie

I do not  share the distain the majority in this thread have with big bad pharmaceutical  companies.  Can I assume  you folks disenchanted with the business end of modern pharmacology did  not allow any of your children to be  immunized against the devastating childhood illness and disease( Not possible unless you plan on home schooling in the US ). Additionally, are you confiscating insulin from the diabetic's you know. Explaining to them as their eyesight fades and their extremities are being amputated. You cannot tolerate these profit hungry , corrupt capitalist pigs profiting from their misfortune. As far as side effect go, consuming too much water has harmful side effects. Working for a living can have harmful side effects, most notable increased stress levels.

 

The cost associated with research and development to bring a new and effective medication to market is astronomical. Even more prohibitive considering the very small market , a Celiac diagnosis statistically is  a rare occurrence, and can be controlled effectively by diet. The fact that any pharmaceutical company is investing in Celiac research is a blessing. Historically, research and development in one drug has yielded benefits in other related illness and disease. I do not find any satisfaction in eating produce and unprocessed meat for the remainder of my life nor the spontaneity you have to give up.

notme Experienced

a diabetic can't just change their diet and be well.  my son is type 1 and trust me:  they milk him for every penny they can get out of him.  you can't buy this unless you buy this as well <according to his insurance company. you can't just buy $30 worth of insulin, you need to drop a hunk of change.  he can't just go get a few days worth until payday.   if he runs out of insulin, he dies.  plain and simple.  no way he can just not eat something and continue living.  like celiacs.  i'm sure big pharma will make a mint if they ever come up with a pill.  that is my opinion and y'all do whatever trips ya trigga.   

Tbolt47 Newbie

a diabetic can't just change their diet and be well.  my son is type 1 and trust me:  they milk him for every penny they can get out of him.  you can't buy this unless you buy this as well <according to his insurance company. you can't just buy $30 worth of insulin, you need to drop a hunk of change.  he can't just go get a few days worth until payday.   if he runs out of insulin, he dies.  plain and simple.  no way he can just not eat something and continue living.  like celiacs.  i'm sure big pharma will make a mint if they ever come up with a pill.  that is my opinion and y'all do whatever trips ya trigga.   

 

a diabetic can't just change their diet and be well.  my son is type 1 and trust me:  they milk him for every penny they can get out of him.  you can't buy this unless you buy this as well <according to his insurance company. you can't just buy $30 worth of insulin, you need to drop a hunk of change.  he can't just go get a few days worth until payday.   if he runs out of insulin, he dies.  plain and simple.  no way he can just not eat something and continue living.  like celiacs.  i'm sure big pharma will make a mint if they ever come up with a pill.  that is my opinion and y'all do whatever trips ya trigga.   

notme!,

 

No other country in the world, ( by country I mean the US) does more  research  both privately funded ( Big Pharma) and tax payer funded- State college's that engage in medical research government grants, etc. for a cure to juvenile and latent onset diabetes .  In addition, if an individual can evince financial need the drug manufacture(s), contrary to the portrayal by the biased  liberal media outlets, have programs established. You will never see this mentioned on the nightly news, it does not fit their agenda.

 

 Your issue may be more with the legal  protocol a MD must follow in the US (assuming you reside in the US), when writing a prescription.  In addition to the benefit level and claims processing of  your son's insurance carrier.

However, if big pharma develops a cure for  diabetes are you against them profiting from it ? The more the have to gain in revenue and profits the more resources they can allocate to the venture.  In  the process this  may  accelerate the  discovery of a "cure"  for Celiac's .

bartfull Rising Star

Fosamax. Vioxx. Celebrex. Hormone replacement therapy.

 

Shall I go on?

 

Why should I take a drug with all of its potential side effects when diet will make me healthy, have NO side effects, and not cost me a thing?

 

I'm not saying certain drugs don't have their place. Lord knows I would be dead by now if it hadn't been for the antibiotics they gave me for my recurring pneumonia when I was younger. But I truly believe that when they started allowing drugs to be advertised to the general public, doctors started handing out prescriptions to most anyone who demanded them. And I don't think the drug companies complained. As a matter of fact, the drug companies aims were met. Why does anyone advertise anything? To sell more! And if the patient (who wants a quick fix pill) pressures the doctor (who gives in too easily), who are the drug companies to complain?

GottaSki Mentor

I do not  share the distain the majority in this thread have with big bad pharmaceutical  companies.  Can I assume  you folks disenchanted with the business end of modern pharmacology did  not allow any of your children to be  immunized against the devastating childhood illness and disease( Not possible unless you plan on home schooling in the US ). Additionally, are you confiscating insulin from the diabetic's you know. Explaining to them as their eyesight fades and their extremities are being amputated. You cannot tolerate these profit hungry , corrupt capitalist pigs profiting from their misfortune. As far as side effect go, consuming too much water has harmful side effects. Working for a living can have harmful side effects, most notable increased stress levels.

 

The cost associated with research and development to bring a new and effective medication to market is astronomical. Even more prohibitive considering the very small market , a Celiac diagnosis statistically is  a rare occurrence, and can be controlled effectively by diet. The fact that any pharmaceutical company is investing in Celiac research is a blessing. Historically, research and development in one drug has yielded benefits in other related illness and disease. I do not find any satisfaction in eating produce and unprocessed meat for the remainder of my life nor the spontaneity you have to give up.

 

You have incorrectly interpreted many of those that have commented on this thread. 

 

I have the utmost respect for the research involved in finding new pharmaceuticals and vaccines.  I have worked with some of the top scientists in this field and would not have figured out how to help my family without input from these Biologists and Chemists. 

 

That being said, I do not believe that just because we have a drug that may improve a symptom it should be the first choice for all patients. 

 

Furthermore, I do not believe patients should be advertised to at the rate they currently are.  Doctors should prescribe medication -- we should not hear of something that "may" help the symptoms we or loved ones are experiencing constantly between news and entertainment on television or within the pages each and every magazine we choose to read. 

 

Our current medical system is not trained to look for answers to their patient's medical conditions in the food those patients are consuming.  Not all conditions need medication. 

 

My family has eight autoimmune conditions among us -- not one has improved with the current push of steroids, immunosuppressants, SNRIs, SSRIs and hefty pain medications.  All of us have had our health improved by dietary choices.

 

We also have had many structural medical issues and cancer and you bet we are grateful beyond measure for the doctors, nurses and medical researchers that save lives every day.

 

As for a new celiac drug -- I have stated before and I'll say again -- it would be fantastic to have something that would allow my family to eat safely outside of our own kitchen and welcome that day -- but doubt any of us will return to eating our pre-celiac diagnosis diet.

Tbolt47 Newbie

Fosamax. Vioxx. Celebrex. Hormone replacement therapy.

 

Shall I go on?

 

Why should I take a drug with all of its potential side effects when diet will make me healthy, have NO side effects, and not cost me a thing?

 

I'm not saying certain drugs don't have their place. Lord knows I would be dead by now if it hadn't been for the antibiotics they gave me for my recurring pneumonia when I was younger. But I truly believe that when they started allowing drugs to be advertised to the general public, doctors started handing out prescriptions to most anyone who demanded them. And I don't think the drug companies complained. As a matter of fact, the drug companies aims were met. Why does anyone advertise anything? To sell more! And if the patient (who wants a quick fix pill) pressures the doctor (who gives in too easily), who are the drug companies to complain?

I will respectfully point out for each medication you listed as a " failure "  there are literally tens of   thousands that have benefited mankind. I have yet to see one anabolic steroid or humane growth hormone advertised, yet their consumption is an epidemic in high school , college and pro athletics. If advertising is so effective , shouldn't there be fewer deaths resulting from texting while driving?

More to the point, the drug companies are not a chartable organization, most are publicly traded for profit organizations. Various companies advertise their " Gluten Free " products all over this site, with the aim of selling more. It creates product awareness and competition, both benefiting the consumer. The same principles apply to the pharmaceutical industry .I am not sure how often a doctor is intimidated into prescribing a " quick fix ", I am sure it happens a small percentage of the time. Ultimately it is up to the consumer to educate themselves and make an informed decision.


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notme Experienced

 

Your issue may be more with the legal  protocol a MD must follow in the US (assuming you reside in the US), when writing a prescription.  In addition to the benefit level and claims processing of  your son's insurance carrier.

However, if big pharma develops a cure for  diabetes are you against them profiting from it ? The more the have to gain in revenue and profits the more resources they can allocate to the venture.  In  the process this  may  accelerate the  discovery of a "cure"  for Celiac's .

excuse me if i am disillusioned with the medical profession/big pharma.  i know r&d has improved treatment of many diseases.   that being said:  maybe the legal protocol for the doctor, maybe the insurance carrier, but he DOES have to jump through hoops and pay a crapload for his insulin, and the pharmacy guards it like fort knox.  i have never heard of people abusing insulin.  but they are free and loose with the pain meds whose abuse is close to an epidemic.  they even have 'pain clinics' - you don't even need insurance, just cold hard cash......   ugugughgghhgghgggh!!

 

sorry, it's a sore subject,, as you can probably tell  :(

 

anyways, the underlying fear (and i'm sure big pharma is counting on this) is that people will never change their diet and learn how to be eating healthy without a pill.  they will just take a pill and become 'dependent' on it.  ka-chingggg...   :o

chasbari Apprentice

"Raise the villi, opening the receptors and allowing gluten to once again be

absorbed by the body."

 

Is it just me or is there SO MUCH wrong with this statement, scientifically?

Uh, tons wrong with it! We get into so much trouble when we try to outsmart the innate intelligent our bodies possess. Lack of clear thinking gives the (P)harmaceutical industry the opening to exploit our lack of total understanding. If you parse the numbers in almost any safety study you will find the risk numbers being calculated on one scale and the benefit numbers on another to make it appear so much better than it actually is. The simple answer. Gluten free. Simpler answer, real food, even simpler, grow your own or get to know a local farmer. Create micro economic climates that don't support the industrial food complex that is ruining the health of a world.

bartfull Rising Star

I will respectfully point out for each medication you listed as a " failure "  there are literally tens of   thousands that have benefited mankind. I have yet to see one anabolic steroid or humane growth hormone advertised, yet their consumption is an epidemic in high school , college and pro athletics. If advertising is so effective , shouldn't there be fewer deaths resulting from texting while driving?

More to the point, the drug companies are not a chartable organization, most are publicly traded for profit organizations. Various companies advertise their " Gluten Free " products all over this site, with the aim of selling more. It creates product awareness and competition, both benefiting the consumer. The same principles apply to the pharmaceutical industry .I am not sure how often a doctor is intimidated into prescribing a " quick fix ", I am sure it happens a small percentage of the time. Ultimately it is up to the consumer to educate themselves and make an informed decision.

Didn't I just say that certain drugs have their place? I am not against all medications.

 

You imply that advertising does no good when you say that people still text while driving. Yet if advertising does no good, why do companies spend millions of dollars on it every year? The thing is, most companies are not advertising things you need a doctor's prescription for.

 

While there have certainly been products on the market that have been recalled, most products do not have serious side effects. Advertising is a useful tool for most businesses. I myself, advertise MY business, but guitars are not potentially dangerous. If they were, you would need a prescription for THEM.

 

If drug companies want to advertise to DOCTORS, fine. DOCTORS are the ones who have the training to both understand the benefits and the risks, and doctors also know their patients history, which other drugs they may be taking, etc. But they ARE feeling pressured BY DIRECT TO CONSUMER ADVERTISING, to prescribe more drugs more often as this article from the National Institue of Health shows. Open Original Shared Link

Tbolt47 Newbie

excuse me if i am disillusioned with the medical profession/big pharma.  i know r&d has improved treatment of many diseases.   that being said:  maybe the legal protocol for the doctor, maybe the insurance carrier, but he DOES have to jump through hoops and pay a crapload for his insulin, and the pharmacy guards it like fort knox.  i have never heard of people abusing insulin.  but they are free and loose with the pain meds whose abuse is close to an epidemic.  they even have 'pain clinics' - you don't even need insurance, just cold hard cash......   ugugughgghhgghgggh!!

 

sorry, it's a sore subject,, as you can probably tell   :(

 

anyways, the underlying fear (and i'm sure big pharma is counting on this) is that people will never change their diet and learn how to be eating healthy without a pill.  they will just take a pill and become 'dependent' on it.  ka-chingggg...   :o

 

Unfortunately with Celiac's it is a profound life style change not just dietary restrictions. The largest percentage of  people with Celiacs are asymptomatic and undiagnosed. If I were 20 years old with no symptoms and were diagnosed with Celiac's and told if I did not change my life style significantly I will face certain health consequences later in life...... or take this pill once a day and carry on as usual, this is what the drug companies are banking on. No flaw in this logic or business model, both parties benefit.

 

Tell a 20 something year old  smoker all of the health problems he/she will most certainly have later in life, they will continue to smoke.

 

As for the rest of us that suffer symptomatically, we really have no choice but change our diet or suffer.

 

I think we all have had our  share of frustration with the delivery system relating to health care . Sorry to hear about yours regarding your son.

Adalaide Mentor

excuse me if i am disillusioned with the medical profession/big pharma.  i know r&d has improved treatment of many diseases.   that being said:  maybe the legal protocol for the doctor, maybe the insurance carrier, but he DOES have to jump through hoops and pay a crapload for his insulin, and the pharmacy guards it like fort knox.  i have never heard of people abusing insulin.  but they are free and loose with the pain meds whose abuse is close to an epidemic.  they even have 'pain clinics' - you don't even need insurance, just cold hard cash......   ugugughgghhgghgggh!!

 

sorry, it's a sore subject,, as you can probably tell   :(

 

anyways, the underlying fear (and i'm sure big pharma is counting on this) is that people will never change their diet and learn how to be eating healthy without a pill.  they will just take a pill and become 'dependent' on it.  ka-chingggg...   :o

 

It is a sore subject in my house as well. You can pick up a $4 generic of any number of narcotics. Still costs $200-$300 a month for a vial of insulin, times two kinds. No generic. No substitutes. And exactly, no one is abusing freaking insulin unless some dips$#& thinks eating cake once in a while and correcting for it is abusing insulin. But yeah... lets just hand out narcotics like candy for next to free. And getting meds at a reduced cost through one of those programs? HAH! Don't even get me started on how positively laughable that entire program is.

bartfull Rising Star

Tbolt, you and I were writing at about the same time so I was wondering if you missed my post from 2:46 PM. I linked to an interesting article. I'd be interested in your response.

notme Experienced

tbolt wrote:  (in my box lolz how dare you!   :lol: )

 

"Unfortunately with Celiac's it is a profound life style change not just dietary restrictions. The largest percentage of  people with Celiacs are asymptomatic and undiagnosed. If I were 20 years old with no symptoms and were diagnosed with Celiac's and told if I did not change my life style significantly I will face certain health consequences later in life...... or take this pill once a day and carry on as usual, this is what the drug companies are banking on. No flaw in this logic or business model, both parties benefit."

 

that is a good point, i actually know a 24 y.o. who is asymptomatic and ignores her celiac.  i tell her she is going to pay for it later, but she doesn't care.  i wish i would have even suspected at that age - i wouldn't have wasted so much time feeling miserable.  

 

if there ever is a pill, they will make sure to test everybody and their brother, encouraged by drug companies - they might even come up with a better/more conclusive  way to test - i would love to see more research $$$ going for that!!  

Tbolt47 Newbie

tbolt wrote:  (in my box lolz how dare you!   :lol: )

 

"Unfortunately with Celiac's it is a profound life style change not just dietary restrictions. The largest percentage of  people with Celiacs are asymptomatic and undiagnosed. If I were 20 years old with no symptoms and were diagnosed with Celiac's and told if I did not change my life style significantly I will face certain health consequences later in life...... or take this pill once a day and carry on as usual, this is what the drug companies are banking on. No flaw in this logic or business model, both parties benefit."

 

that is a good point, i actually know a 24 y.o. who is asymptomatic and ignores her celiac.  i tell her she is going to pay for it later, but she doesn't care.  i wish i would have even suspected at that age - i wouldn't have wasted so much time feeling miserable.  

 

if there ever is a pill, they will make sure to test everybody and their brother, encouraged by drug companies - they might even come up with a better/more conclusive  way to test - i would love to see more research $$$ going for that!!  

I apologize for invading your space, no double entendre intended.

Tbolt47 Newbie

Tbolt, you and I were writing at about the same time so I was wondering if you missed my post from 2:46 PM. I linked to an interesting article. I'd be interested in your response.

bartfull,The article is a bit old ( 1999) and 199 physicians is a very small sample size. So, 5 patients a week attempted to pressure the MD into prescribing a certain med., and 30% of the time  they succumb. If the efficacy of both drugs (the intended one vs. patients preference) is relatively equal , no harm done. Although, consumer groups and the states attorney would have a problem if 5 drug companies pressured the MD and he succumbed 30 % of the time, forcing the patient to use a certain drug companies product.

By the way pharmaceutical companies do advertise directly to physicians, their  representatives are constantly in the physicians office

quoting chapter and verse why their product is better than their competitors.

bartfull Rising Star

That article may be old, but I have read other articles that claim the same thing. I know that drug companies advertise to doctors and that is as it should be. But when they advertise to the average person watching some TV show, I believe it is only causing trouble.

 

And wasn't there a law passed a few years ago banning drug companies from giving doctors "gifts" for selling their product? I seem to recall some companies even offered free vacation trips to some doctors who prescribed lots of their drugs. As far as I'm concerned, those free trips are just another form of kickback.

bartfull Rising Star

Sort of like this:Open Original Shared Link

Salax Contributor

While the article is entertaining to read.....(not sure I buy the legitamacy of it) it would be interesting in theory, but then many Celiac's would need to take something like this long term in order to see what the affects of the drugs are doing. And that I would gather would be dangerous for them and probably bad.

 

Then, I don't believe this is the right approach to celiac disease or any for that matter. There is no money in a cure, there never will be. Hence we have drugs that cover up/help or get rid of symptoms. But the bottom line is the disease still exits, so while the drug many help a person get through the day, the problem of a remaining disease still exists and that isn't exactly helpful for the long term.

 

While WE as advocates for our own health (because we have had to be in many cases because of the lack of education in our doctors) we can make good decisions about food and nutrition. While that may not cure us of our disease, it allows us to not depend on the drug companies to "take care" of our symptoms in the mean time. We can take care of that ourselves in a more reliable and natural way. And that is huge in the long term. It also should teach the next generation that they also have that ablity to become their own health advocates and stand strong for their decisions in health and how/what they eat. Because ultimately that is up to us as individuals.

 

B)

notme Experienced

I apologize for invading your space, no double entendre intended.

(i was just teasing - it'sall good :)  )

 

 

By the way pharmaceutical companies do advertise directly to physicians, their  representatives are constantly in the physicians office

quoting chapter and verse why their product is better than their competitors.

they do more than that.  i worked in the med staff office at a hospital and we were constantly setting up 'dinner meetings' where drug companies take a slew of docs out for fancy dinner, open bar, a short film and a whole lot of shmoozing.  all paid for by the pharmaceutical co - i went to quite a few as support staff.  

 

and you can see them coming a mile away - they are dooded up!  $$$$$$$  

Tbolt47 Newbie

(i was just teasing - it'sall good :)  )

 

they do more than that.  i worked in the med staff office at a hospital and we were constantly setting up 'dinner meetings' where drug companies take a slew of docs out for fancy dinner, open bar, a short film and a whole lot of shmoozing.  all paid for by the pharmaceutical co - i went to quite a few as support staff.  

 

and you can see them coming a mile away - they are dooded up!  $$$$$$$  

 

(i was just teasing - it'sall good :)  )

 

they do more than that.  i worked in the med staff office at a hospital and we were constantly setting up 'dinner meetings' where drug companies take a slew of docs out for fancy dinner, open bar, a short film and a whole lot of shmoozing.  all paid for by the pharmaceutical co - i went to quite a few as support staff.  

 

and you can see them coming a mile away - they are dooded up!  $$$$$$$  

Good, I was going to respond in like kind, but thought better of  getting " virtually " slapped ;)

Business is the engine that drives our society . As you eluded to earlier. if the drug companies sponsor testing, and the  more of the population is diagnosed there will be many changes. As the perceived target market increases more resources can be justifiable used toward a cure. Also, the Gluten Free are underserved in every business segment, from actual good tasting gluten-free beer(there are none) to all inclusive resorts catering to the gluten-free.

Tbolt47 Newbie

That article may be old, but I have read other articles that claim the same thing. I know that drug companies advertise to doctors and that is as it should be. But when they advertise to the average person watching some TV show, I believe it is only causing trouble.

 

And wasn't there a law passed a few years ago banning drug companies from giving doctors "gifts" for selling their product? I seem to recall some companies even offered free vacation trips to some doctors who prescribed lots of their drugs. As far as I'm concerned, those free trips are just another form of kickback.

In my experience all walks of life have there temptations. We would like believe Doctors are above unjustly enriching themselves but human nature says otherwise.I know in my business we cannot offer gifts to clients and or prosprctive clients in excess of a certain dollar value. A charitable donation given to a clients pet charity also needs to requires a prohibitive amount of paperwork and sign offs. 

Tbolt47 Newbie

More info on a number of potential  Celiac Medications:

 

Open Original Shared Link

IrishHeart Veteran

 

While WE as advocates for our own health (because we have had to be in many cases because of the lack of education in our doctors) we can make good decisions about food and nutrition. While that may not cure us of our disease, it allows us to not depend on the drug companies to "take care" of our symptoms in the mean time. We can take care of that ourselves in a more reliable and natural way. And that is huge in the long term. It also should teach the next generation that they also have that ablity to become their own health advocates and stand strong for their decisions in health and how/what they eat. Because ultimately that is up to us as individuals.

 

B)

 

Well said, Salax!!

 

 Also, the Gluten Free are underserved in every business segment, from actual good tasting gluten-free beer(there are none) to all inclusive resorts catering to the gluten-free.

 

Oh come now, take heart! there are SOME good gluten-free beers.  :)  Green's Dark and New Planet for starters.

 

Here's an all inclusive resort...got a passport?:

 

Open Original Shared Link

 

Why do you need an all inclusive resort anyway? I was in Key Largo for a week, for example.... and with a little googling and the Find me Gluten Free app, I had a blast. When I did not eat out, I cooked in the kitchen of a house right on the ocean. Never got hit once.

 

This may be veering waaaaay off topic at this point, but I thought it needed to be said. I noticed you mentioned earlier in the thread you did not want to eat so spartan for the rest of your life (produce and plain meat) , and I wonder why you feel so deprived. :(

 

I eat so well and sometimes we indulge in gourmet cooking at home and out...and I can say that I feel pretty good for the first time in my entire life.  I actually I wonder why everyone doesn't eat this way, celiac or not.

 

Drugs? I don't need no stinkin drugs! In fact, I do not take any meds at all since my DX and being gluten-free

 

(At one time I was on 12 meds, doing what I was told--treating all my "syndromes", conditions and AI symptoms and STILL, it was  keeping me ill----'cause that how doctors and Big Pharma likes it)

 

Do some people need drugs? sure! and they should take them. I needed some big guns meds this past week--for a tick bite and a chipmunk bite (long story) but these were emergency situations and both treatments created more problems than I would have liked. 

 

Cancer drugs, drugs for diabetes, etc....yes, absolutely essential.

 

But this is not how to "treat" celiac. The G F diet is.

.

This is my opinion based on my experiences.  ;) 

Tbolt47 Newbie

 

This may be veering waaaaay off topic at this point, but I thought it needed to be said. I noticed you mentioned earlier in the thread you did not want to eat so spartan for the rest of your life (produce and plain meat) , and I wonder why you feel so deprived. :(

 

 

 

Good Morning IrishHeart,

" Deprived " is your word, I said I was not satisfied eating produce and unprocessed meat nor with the lack of spontaneity. Developing Celiac's was not an epiphany for me, I have long understood the value of eating right and exercise. My father introduced me into running when I was 14. For the past 30+ years I have averaged 20-25 miles a week. Breakfast and Lunch are very healthy meals . Dinner I ate what I wanted and as much as I wanted and enjoyed it tremendously, until 7 months ago. I truly feel for those who have suffered for years undiagnosed and finally have the answer.I understand their agony and than  rapture when they alter their diet and  begin to feel good for the first time, possible for the first time in their life. This was not my experience. Bringing new meaning to, " one man's meat may be another's poison ".

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    4. - More2Learn posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Celiac Maybe a Possibility?

    5. - Wheatwacked replied to GardeningForHealth's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Ground meat absolutely full of gluten?


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    • Jeff Platt
      Ear pain and ringing your entire life may or may not be TMJ related but could be something else. A good TMJ exam would be helpful to rule that out as a potential cause from a dentist who treats that. I have teens as well as adults of all ages who suffer from TMJ issues so it’s not a certain age when it shows up.   
    • cristiana
      Not sure if related to coeliac disease but my ear ringing  has stepped up a notch since diagnosis.  Even since a child silence really hurts my ears - there is always a really loud noise if there is no other noise in a quiet room - but my brain has learned to filter it out.  Since diagnosis in my forties I also get a metallic ringing in my ears, sometimes just one, sometimes both.  But it comes and goes.   My sister also suffers now, we are both in our fifties, but she is not a coeliac, so for all I know it could just be an age thing.  I do get occasional stabbing pain in my ears but that has been all my life, and I do appear to be vulnerable to outer ear infections too.  So not a particularly helpful reply here, but I suppose what I am trying to say is it might be related but then again it could just be one of those things.   I think in the UK where I live doctors like you to report if you get tinnitus in just the one ear.  I reported mine but no cause was found.  Most of the time it is nothing but sometimes it can have a cause that can be treated, so perhaps worth reporting to your GP.  
    • Scott Adams
      Welcome to the forum, and thank you for sharing your story! It sounds like you’ve been through an incredible journey with your health, and it’s no wonder you’re starting to piece things together and wonder about celiac disease. Your experiences—from childhood through adulthood—paint a picture of symptoms that are often associated with celiac disease, though they can overlap with other conditions as well. The recurring sinus infections, being underweight as a child, chronic gastrointestinal issues, nutrient-related symptoms like cramps, and the persistent fatigue and brain fog are all things that many people with undiagnosed celiac report. Your reactions to gluten also stand out. The improvement in symptoms when you reduce or remove gluten, followed by the resurgence of pain and other problems when you reintroduce it, is a common experience for those with celiac or gluten intolerance. While your frustrations and trials with elimination diets might not have given you concrete answers yet, they’ve provided valuable clues. It’s also worth noting that celiac disease doesn’t always present in the classic way. Many people, like yourself, may not experience severe gastrointestinal distress but instead have “atypical” or extraintestinal symptoms like joint pain, menstrual irregularities, fatigue, and more. It’s a condition that can go undiagnosed for years, especially when symptoms are subtle, sporadic, or mistakenly attributed to other issues. The fact that you’ve sought alternative approaches to feel better shows just how determined you’ve been to find relief, even without a definitive diagnosis. Given your history and how your body responds to gluten, it would be worth exploring celiac disease further with a medical professional. Before removing gluten completely, it’s important to get tested while you’re still eating it, as going gluten-free beforehand can affect the accuracy of the results. A blood test for celiac antibodies (like tTG-IgA) is usually the first step, and if positive, an endoscopy may follow to confirm the diagnosis. If the testing process feels daunting, keep in mind that getting answers could give you clarity and help guide your health decisions going forward. Whatever the outcome, you’ve already made significant strides in identifying triggers and managing your symptoms. Your awareness and persistence are key, and this community is here to support you as you continue to seek answers. This article might be helpful. It breaks down each type of blood test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • More2Learn
      Hi, I am new!  (Although I've used this forum as a reference over the past couple of years.) I'm just looking for some initial reactions to if I actually might possibly have Celiac Disease, or if I'm reaching here.  I have had lifelong health issues and not once has a doctor suggested I look into celiac. I always thought it was basically an extreme allergy that needed an EpiPen, and I know that's not me.  However, I stumbled upon some symptoms, realized I was wrong, and after some research I'm almost shocked at what I have found.  It seems like anything I've ever struggled with has a potential correlation to this disease!  I'm in my 40's, now.  Here is my journey to date... Issues as a Kid: tons of allergies, and had sinus infections all the time... however I didn't have hayfever-like allergies and the scratch tests didn't register much, it was more that when I was exposed to allergens (like say I spent hours with a cat) I was certain to get a sinus infection and it lasted months. was extremely skinny and everyone always said I was anorexic (I wasn't) always getting sick and the illnesses hang on for a long time always cold (my favorite thing to do is sit in front of a space heater or be out in 90 degree weather) intermittent bad constipation (still happens but not as severe) horrible toe cramps that would wake me up in the middle of the night As I got older (teenage/college years): acid reflux diagnosis learned that beer made me EXTREMELY sick, cannot tolerate it horrible issues with menstrual cycle - I wasn't regular, had awful cramps and PMS, sometimes cannot function the first couple of days night terrors/sleep walking more stomach issues - I learned I couldn't have black coffee.  I often had issues especially when traveling.  For example I finally noticed a pattern that I could never, ever eat at a hotel buffet spread - it would always make me sick afterwards. More recent problems: always tired periodic pain on right side that can be so painful I can't stand up straight. Have had all kinds of scans and doctors always say I'm fine.  I was so sure I had gallstones or my liver was failing but... nope. chest pain brain fog not diagnosed but many, many ADHD symptoms lots of inflammation, am overweight now toe cramps evolved into leg/calf cramps None of my symptoms from any era of my life ever really resolved, except I went from being skinny to ~20/30 pounds overweight, and as I got older I got less outright sinus infections.  Largely due to the pain in my right side and the fact that I always, always seem to pick up every illness, especially when traveling, I started pursuing alternative medicine paths... I did the Pritikin lifestyle, I tried an elimination diet, I followed the Root Cause Protocol, I did a Leptin reset.  A lot of these paths recommend removing gluten, and in the past year or so some of my symptoms have gone away!  Specifically less issues with toe cramps, sometimes the side pain would go away for a long time, and my acid reflux got much better.  But, because I was never diagnosed with any specific intolerance, I wasn't militant about the gluten - I had cut out dairy, soy, all kinds of things.  So I would say cross-contamination is ok, or make an exception at a group outing. Then one day, I just got frustrated and ate some normal slices of pizza... and my side pain came back!  I started doing research and now I'm here and wondering... could I have actually had this my whole life??!? Thoughts and observations welcome.           
    • Wheatwacked
      "grass-fed" meat by definition cannot contain wheat as it means the animal is only fed grass  organic meat can be fed wheat feed
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