Jump to content

  • 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

The Stuff Doctors Tell Their People...sad

Lisa

By Lisa
in Coping with Celiac Disease

Recommended Posts

Lisa Mentor
Lisa
Posted

What patients are told, still mystifies me.  This is from a friend....

 

"Lisa, you are in worse shape than me if you have Celiac. i was heading in that direction and my doc told me if I didn't get off gluten that would probably be my final outcome. Basically, I was having an auto immune reaction to gluten. When I ate it I hurt all over...like rheumatoid (sp) arthritis. Gut also messed up all the time. Anyway..I could go on and on. Feeling so much better though."

 

...stupid doctor!

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

Celiac.com Sponsor (A8-M):


powerofpositivethinking Community Regular
powerofpositivethinking
Posted

wow  :o

kareng Grand Master
kareng
Posted

What does that even mean?  :wacko:

 

What an idiot!

Fire Fairy Enthusiast
Fire Fairy
Posted

:wacko: Ever want to grab a Doctor and shake him? Maybe make his brain rattle back into place. 

pricklypear1971 Community Regular
pricklypear1971
Posted

What patients are told, still mystifies me. This is from a friend....

"Lisa, you are in worse shape than me if you have Celiac. i was heading in that direction and my doc told me if I didn't get off gluten that would probably be my final outcome. Basically, I was having an auto immune reaction to gluten. When I ate it I hurt all over...like rheumatoid (sp) arthritis. Gut also messed up all the time. Anyway..I could go on and on. Feeling so much better though."

...stupid doctor!

This sounds like one of the new explanations about ncgi??? Have no idea if your friend went through traditional testing, but we read/hear explanations like this all the time on this board re: ncgi.

Lisa Mentor
Lisa
Posted
  • Author

This sounds like one of the new explanations about ncgi??? Have no idea if your friend went through traditional testing, but we read/hear explanations like this all the time on this board re: ncgi.

I do not know what test she has had and I will post them later if I find out.  But, as you all know Non Celiac Gluten Intolerance and Celiac Disease can rival each other in the level of severety of symptoms and damage.

pricklypear1971 Community Regular
pricklypear1971
Posted

I do not know what test she has had and I will post them later if I find out. But, as you all know Non Celiac Gluten Intolerance and Celiac Disease can rival each other in the level of severety of symptoms and damage.

I don't think anyone doubts the problems gluten can cause, and that symptoms are not diagnostic of one or the other...

My point is that the explanation sounds eerily familiar as an explanation of ncgi. What I hate about the explanation if ncgi (most of the time) is that it comes off as being "lesser" in the dietary requirements as well as effects - when really, studies have not been done and the medical community really doesn't know.

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

Celiac.com Sponsor (A8-M):


CaliSparrow Collaborator
CaliSparrow
Posted

I had a doctor tell me in passing that Celiac wasn't an autoimmune condition. I told him Celiac is the only autoimmune condition with a known trigger. He had to turn around in order to gather himself. It was a good day.

nvsmom Community Regular
nvsmom
Posted

Yep. I recently had a doctor tesll me celiac wasn't an autoimmune disease either, and then he gave me a pamphlet that discussed how eating papaya digestive aids would allow people to eat gluten again.... Uh huh. Riiiiiiight.  :blink:  :huh:  :rolleyes:

Lisa Mentor
Lisa
Posted
  • Author

Yep. I recently had a doctor tesll me celiac wasn't an autoimmune disease either, and then he gave me a pamphlet that discussed how eating papaya digestive aids would allow people to eat gluten again.... Uh huh. Riiiiiiight.  :blink:  :huh:  :rolleyes:

A family member doctor said they are pressured all the time to push pharm's (within the law).  Just as a tire store are solicited to sell the best tires from various tire manufactures. It's just business.

 

I should have married a doctor.....OH, what a goodie bag I would have.  :lol: :lol: :lol:

nvsmom Community Regular
nvsmom
Posted
:D LOL
surviormom Rookie
surviormom
Posted

So is that why the GI wants me on Prilosec and the GP wants me on Zantac, both want me on Gaviscon, and I just want Betaine and Slippery Elm.

 

When did it switch from healing people to money money money.  That is just wrong.

TGK112 Contributor
TGK112
Posted

When I was first diagnosed my primary care dr told me, despite my bone loss "Celiac has nothing to do with osteoporosis".

 

After being on the diet, I had a follow up endoscopy. My GI told me that because I healed so quickly "You could treat yourself on occasion with a (gluten) treat"

 

I live in Seattle - anyone know of good doctors here?!?

Fire Fairy Enthusiast
Fire Fairy
Posted

So is that why the GI wants me on Prilosec and the GP wants me on Zantac, both want me on Gaviscon, and I just want Betaine and Slippery Elm.

 

When did it switch from healing people to money money money.  That is just wrong.

I've always wondered when the Hippocratic Oath became the hypocritical oath.

GlutenStinks15 Explorer
GlutenStinks15
Posted

Just to add to this, my neice was diagnosed via bloodwork and her parents took her to a GI who said, "I want to do an endoscopy to see the level of damage. Then we can see how much gluten she can eat."

 

WHAT?!? I was practically screaming at my brother in law when he told me that. I said, "SHE CAN'T HAVE GLUTEN!"

 

They are going to another GI now. Ridiculous!

Ollie's Mom Apprentice
Ollie's Mom
Posted

My cousin's son was diagnosed at 9 months. He was in rough shape at the time...

Fast forward 4 years, and the doc tells his parents that he's all healed, and can get off this ridiculously restrictive gluten-free diet since he has now healed and, thus, grown out of it.

Argh... So he's eating gluten again!!

His mom should know better. Her grandfather had celiac... His entire life (of course!)

tarnalberry Community Regular
tarnalberry
Posted

You want to read bad stuff people's docs tell them (though not about celiac), check out Open Original Shared Link.  But don't check it out if you're having a baby soon, or you might scare yourself.

Ollie's Mom Apprentice
Ollie's Mom
Posted

You want to read bad stuff people's docs tell them (though not about celiac), check out Open Original Shared Link. But don't check it out if you're having a baby soon, or you might scare yourself.

Wow. I made it to the second page and read the ones about the stillborn and the miscarriage. And I had to stop. Terrible. It makes me sad.

tarnalberry Community Regular
tarnalberry
Posted

The recent story on there, which had a few quotes, where the docs were really just covering their butts (and later admitted to it, but lied to the mother at first) just helps me remember that there is so much more in "medicine" than actually medicine.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.