Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

1 In 133


miles2go

Recommended Posts

miles2go Contributor

Hi, I was just thinking in the shower this morning, if 1 in 133 people are celiac, wouldn't that translate to roughly 1 in 133 doctors that are celiac? And if that were the case, wouldn't a lot of doctors be knowledgeable about it? Or at least a lot more? Are there a lot of undiagnosed doctors out there?

I don't get it... <_<

Margaret


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



SalmonNationWoman Newbie

They don't get it! <_<

That ratio of 1:133 refers to the # potential number of Celiacs, not those actually diagnosed in the US. I'm a doc and I didn't connect the dots until 15 months ago.

My father, who's an ENT/allergist has never gotten despite his obvious Celiac symptoms or that he's had 5 brothers die of Celiac related GI cancers.

My mother, a nurse practitioner of 54 years with (+) ulcerative colitis, (+) gluten intolerance and (-) celiac tests doesn't get it despite being told by 2 doctors to go gluten free.

My primary care didn't get it until I reported to him about my mother's genetic testing, my sisters' and niece's results. Even after I eliminated and challenged did he get it. I had to point him and the NP to what I unearthed before they got it. By now, there's no point in paying thousands for testing that will more than likely render false results. The dr. decided it was best to tag my charts and listen to what I had to teach him.

Go figure...... :angry: I hope their patients in the future benefit from my hard work.

samcarter Contributor

Ever hear the old phrase, "Doctor, heal thyself"? Doctors are the worst patients. My BIL is a doctor and IMO, he's a bit of a moron. He's "diagnosed" another BIL with some weird stomach problem, and told him to sit in certain ways to "alleviate" the pain. No discussion of possible digestive issues, celiac (lots of Irish on that side, BTW). Even though Dr. BIL's own daughter and wife have a wheat allergy, he's never brought up the topic to the BIL with the lifelong stomach issues.

Oh, and this same "doctor" came home from working at a clinic with lots of sick people and proceeded to pick up his infant son WITHOUT EVEN WASHING HIS HANDS. Exactly one week later, my SIL called and told me that the baby had pertussis. And, oh, so did her husband. GO FIGURE. Wash your hands, doofus.

Sorry. I'm just a bit down on doctors lately. :P

mushroom Proficient
I hope their patients in the future benefit from my hard work.

That is the sincere hope of all we self-diagnosed celiacs; that we can educate at least our own doctors :rolleyes: It is too much to hope [sigh] that they might in turn educate their colleagues, although my PCP did state that the subject is under much discussion in the medical community here.

SalmonNationWoman Newbie

TOTAL SYMPATHY HERE. I'm a doctor and I'm down on doctors myself!

I've been on a sabatical from practice since just before my self-diagnosis. I'm not sure I want to return considering all the costly changes I'll need to make and maintain the the clinic a gluten-free zone. I've already decided group practice won't work for me, so BF and I are looking to move to property where I can have my private clinic attached to our house.

DakotaRN Newbie
TOTAL SYMPATHY HERE. I'm a doctor and I'm down on doctors myself!

I've been on a sabatical from practice since just before my self-diagnosis. I'm not sure I want to return considering all the costly changes I'll need to make and maintain the the clinic a gluten-free zone. I've already decided group practice won't work for me, so BF and I are looking to move to property where I can have my private clinic attached to our house.

Good luck to you.

SalmonNationWoman Newbie
Good luck to you.

I've already been visualizing a reinvented style of practice that's more lifestyle counseling with treatments included. Practicing isn't going to be my primary revenue stream, more of an advocation. Honestly though, with so many doctors speacializing (70% v. 30% in PCP), we need more lifestyle and food therapy doctor-educators if we're really going to implement mass dietary changes as preventative medicine.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



sixtytwo Apprentice

When you do go into practice again, you need to let everyone on this blog know. I am sure they would flock to you for treatment if they were anywhere near enough to make it practical to get to you.

rinne Apprentice
Hi, I was just thinking in the shower this morning, if 1 in 133 people are celiac, wouldn't that translate to roughly 1 in 133 doctors that are celiac? And if that were the case, wouldn't a lot of doctors be knowledgeable about it? Or at least a lot more? Are there a lot of undiagnosed doctors out there?

I don't get it... <_<

Margaret

:lol: Good point although I think the stats would be somewhat different, :) that there are many undiagnosed doctors out there is, I am sure, true.

I've already been visualizing a reinvented style of practice that's more lifestyle counseling with treatments included. Practicing isn't going to be my primary revenue stream, more of an advocation. Honestly though, with so many doctors speacializing (70% v. 30% in PCP), we need more lifestyle and food therapy doctor-educators if we're really going to implement mass dietary changes as preventative medicine.

I know I would be interested in a thread talking about what kind of clinic I would like to be able to go to, just in case you are interested in starting one. :)

I read a study recently about medical students at Harvard giving it a D mark because of its' close connections to pharmaceutical companies. Students talked about having raised concerns regarding the side effects of certain drugs and a professor dismissing those concerns, it was later revealed that this professor received financial benefits from this company. I am encouraged that young doctors see how their profession has been tainted by this corruption and are working to change it.

Ahorsesoul Enthusiast

As soon as there is an expensive medication for Celiac Disease, then all the medical folks will be interested.

SalmonNationWoman Newbie
As soon as there is an expensive medication for Celiac Disease, then all the medical folks will be interested.

But would you want to take that expesnive medicine knowing what you know about Celiac and all the meds that were heavily protmoted in recent history that turn out to cause more damage than good?

I don't know when I'll open a clinic. I'm still actively healing. It's only been about 15 months for me. My symptoms include neurological, ligament and bone complications and while it's true that nerve tissue can regenerate in its own manner, it takes time and diligence.

There's also some big financial hurdles like getting the hardware and software for this stupid e-records system, being HIPPA compliant, new equipment to accomodate my physical needs, etc. We're talking $30K minimum in a solo practice just for the e-records. I don't know how anybody else is fairing in this economy but our business and personal lines of credit is non-existent at this point.

Snubu Newbie

[it seems to me that the medical community is stuck in a paradigm. It was my chiropractor/kinesiologist who finally got it after three years of dealing with all my issues. I had THREE saliva tests that were positive on gluten, but neither he nor me got it until three months ago when his WIFE tested positive. When I mentioned celiac to my brother-in-law who is a family doctor and asked him about whether he has treated any celiac patients, his response was: I had maybe a few, but I do not bother with diarrhea people and send them to the GI! Here we go, the medical community thinks it is all about diarrhea!!! I am so frustratedwith doctors that I try to stay away from them. My chiropractor/kinesiologist can read my body like a book and has helped me more than any doctor out there who is only pushing drugs.

Amy Joe Rookie

Wow are there some powerful statements on this post. I am new to having a GI. But I can really relate about Dr's and not believing what we have to say about our own bodies. Took me 35 months of declining neurological health before my surgery and even at that I had to do 90% of the dx myself. My last NL Dr read my MRI and argued with me over the phone that it was normal....well it wasn't. I had to push for a special Upright MRI. I was blocked @ C1 vertebra from lack of CSF from my Cerebellum herniating down my spinal cord.

A dozen + brain guys before I got taken seriously and helped!

Thankfully I found a wonderfully smart Endo....

It appears that no matter what the health issue, unless there is big pay day for New Drugs.....it plain old sucks. Every where you drive there is a new Walgreen, CVS or Rite Aide going up.... It amazes me.

SalmonNationWoman Newbie

This will sound like some wacko conspiracy theory but her it goes...

If a patient can't be pidgeon-holed, they're cullable

If a patient doesn't respond to a uselessly expensive and risky drug, they're cullable

If a patient doesn't need a joint replacement (or refuses it), they're cullable

If a patient can't work 60-70 hour weeks on end, they're cullable

The medical estblishment colludes with big corporations to cull people that can't perform like robots with no desire or ability to think independently (replacement parts and all)

Less than 20 years ago the average IQ of Americans was 105. It's now 98, a 7 point drop. This is the dumbing down of America.

And we're all led to believe slavery ended with the Emancipation Proclamation...

Wow are there some powerful statements on this post. I am new to having a GI. But I can really relate about Dr's and not believing what we have to say about our own bodies. Took me 35 months of declining neurological health before my surgery and even at that I had to do 90% of the dx myself. My last NL Dr read my MRI and argued with me over the phone that it was normal....well it wasn't. I had to push for a special Upright MRI. I was blocked @ C1 vertebra from lack of CSF from my Cerebellum herniating down my spinal cord.

A dozen + brain guys before I got taken seriously and helped!

Thankfully I found a wonderfully smart Endo....

It appears that no matter what the health issue, unless there is big pay day for New Drugs.....it plain old sucks. Every where you drive there is a new Walgreen, CVS or Rite Aide going up.... It amazes me.

Jestgar Rising Star
This will sound like some wacko conspiracy theory but her it goes...

If a patient can't be pidgeon-holed, they're cullable

If a patient doesn't respond to a uselessly expensive and risky drug, they're cullable

If a patient doesn't need a joint replacement (or refuses it), they're cullable

If a patient can't work 60-70 hour weeks on end, they're cullable

The medical estblishment colludes with big corporations to cull people that can't perform like robots with no desire or ability to think independently (replacement parts and all)

Less than 20 years ago the average IQ of Americans was 105. It's now 98, a 7 point drop. This is the dumbing down of America.

And we're all led to believe slavery ended with the Emancipation Proclamation...

I'd have to say that that sounds like an incredibly random group of statements and doesn't fit in to anything I've experienced.

yeah, I'd go with wacko.

SalmonNationWoman Newbie

I have a different perspective and insider information. I can say these things from over 25 years in practice and as a patient that's suffered the foolishness of allopathic medicine. Perhaps I haven't mentioned my father was an ENT/allergist and my mother was a nurse practitioner.... :blink:

Tim-n-VA Contributor

So if I understand this:

The medical community can't be trusted.

You are part of the medical community.

Therefore you can't be trusted.

Therefore the medical community can be trusted.

You are part of the medical community.

Therefore you can be trusted.

Therefore the medical community can't be trusted.

Where do I get off of the cycle?

Jestgar Rising Star
So if I understand this:

The medical community can't be trusted.

You are part of the medical community.

Therefore you can't be trusted.

Therefore the medical community can be trusted.

You are part of the medical community.

Therefore you can be trusted.

Therefore the medical community can't be trusted.

Where do I get off of the cycle?

:lol: :lol: :lol:

Yes, it's unfortunate that none of the rest of us have any connection with the medical community................... :huh:

SalmonNationWoman Newbie

I said ALLOPATHIC MEDICINE, not the entire medical community. There is a difference.

Acupuncturists, Chirorpactors and Naturopaths, etc, AREN'T ALLOPATHS! I NEVER SAID I WAS AN ALLOPATHIC PRACTITIONER, so no I don't trust ALLOPATHS, like MD's and most DO's.

Mtndog Collaborator
I said ALLOPATHIC MEDICINE, not the entire medical community. There is a difference.

Acupuncturists, Chirorpactors and Naturopaths, etc, AREN'T ALLOPATHS! I NEVER SAID I WAS AN ALLOPATHIC PRACTITIONER, so no I don't trust ALLOPATHS, like MD's and most DO's.

I'm curious as to why in many views, acupuncturists, naturopaths, DO's and other "non-traditional" doctors seem exempt from criticism. I have had bad MD experiences, but I've also had bad acupuncture and chiropractor experiences. I had an acupuncturist tell me I didn't have celiac and I could eat wheat as long as I saw him three times a week.

My 35 year old otherwise healthy husband had a stroke after a chiropractic neck adjustment. That may not have been the cause but it may have been. The chiropractor did no assessment, no Xrays just went right in and cracked.

There are good and bad doctors, Western and otherwise. I see a combination of both. It all depends on the practicioner. Would I see another acupuncturist? Absolutely. Chiropractor? Yep. MD? Yep.

Amy Joe Rookie

It's like any profession. There are good and bad. EXCEPT we hold Dr's of any field to a much higher level of expectation and Dr's are much more reserved because of lawsuit's.

Sad when you really think about it. I have noticed that a Dr in private practice is much more likely to want to try all kinds of NEW and IMPROVED drugs then those that are not of a private practice.

My family has much better care since we have changed to a non private Dr. You would think it the opposite. Our new Dr is at a teaching hospital, the entire staff of PCP's are only in clinic 50% of the time....the rest is in research. I have found that they tend to do more testing.

Amy Joe

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,878
    • Most Online (within 30 mins)
      7,748

    Dcecilio
    Newest Member
    Dcecilio
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      @Mynx, how long have you been gluten-free? I ask because many newly diagnosed celiacs react to many things, and often think their reactions are caused by gluten, when in fact, they are really caused by a combination of a sensitive gut due to damage, as well as additional food intolerance/leaky gut issues to other foods which may be temporary until their villi heal.
    • Scott Adams
      Many major brands of distilled vinegar in the USA, including Heinz white vinegar, are typically made from corn. In the United States, corn is a common and cost-effective raw material used in the production of distilled white vinegar. The process involves fermenting the sugars derived from corn into alcohol, which is then further fermented into acetic acid to produce vinegar. Distillation follows, which purifies the liquid and removes impurities, including any residual proteins or allergens. While the source of the vinegar (e.g., corn) is not always explicitly stated on the label, corn-derived vinegar is widely used in the food industry due to its neutral flavor and affordability. For individuals with gluten intolerance or celiac disease, distilled vinegar made from corn is generally considered safe, as the distillation process effectively removes gluten proteins. However, if you have concerns about cross-contamination or specific sensitivities, it’s always a good idea to contact the manufacturer directly to confirm the sourcing and production practices. Heinz, for example, has stated that their distilled white vinegar is gluten-free and safe for those with celiac disease, but verifying this information can provide additional peace of mind. The belief that distilled vinegar is gluten-free is rooted in the scientific understanding that gluten proteins, which are large and complex molecules, are generally too big to pass through the distillation process. Distillation involves heating a liquid to create vapor, which is then condensed back into a liquid form, leaving behind larger molecules like gluten proteins. However, the concern about cross-contamination arises from the possibility that gluten-containing ingredients may have been present in the liquid prior to distillation. While the distillation process itself is highly effective at removing gluten, the equipment used in production could potentially introduce trace amounts of gluten if not thoroughly cleaned between batches. For most individuals with gluten sensitivity or celiac disease, distilled vinegar is considered safe because the gluten content, if any, is typically below the threshold that would trigger a reaction. However, for those with extreme gluten intolerance or celiac disease, even trace amounts can cause adverse effects. This is why some individuals, like yourself, may choose to avoid commercially produced distilled vinegar and opt for alternatives like apple cider vinegar, which can be verified as gluten-free. The meticulous process of researching ingredients and preparing homemade products, such as ketchup, is indeed challenging but crucial for maintaining health and avoiding gluten exposure. It’s important to note that regulatory standards for gluten-free labeling vary by region, and in many places, products labeled "gluten-free" must contain less than 20 parts per million (ppm) of gluten, which is considered safe for the vast majority of people with celiac disease. Nonetheless, individual sensitivity levels can vary, and your approach highlights the importance of personalized dietary management for those with severe gluten intolerance.
    • Bebee
      I have been diagnosed with Microscopic Colitis (LC) for quite a few years, so I have been gluten-free and DF.  I would like to get tested for Celiac Disease because of the possibility of cross contamination and colon cancer.  And if you were hospitalized and didn't have a celiac diagnosis you could not get gluten-free food, I don't know if that is true or not.  Also because there is chance of colon cancer so I want to know if I have Celiac Disease and need to be on very restrictive diet.  The only testing I did was a sigmoid scope and Enter Lab but no gene testing.  I know I can go back to eating gluten for a few months, but I would worry you would have to stay home for the few months while getting gluten.  What other options do I have?  Should I do the gene testing?  Maybe through Entero Lab?  Any other tests?  How important is it to have Celiac diagnosed? Thank you! Barb
    • trents
      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
×
×
  • Create New...