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

Doctor Who Are Helpful

discouragedmomof5

By discouragedmomof5
in Doctors

Recommended Posts

discouragedmomof5 Rookie
discouragedmomof5
Posted

I have encountered so many doctors over the last nine years, some of which think I am crazy and others who regretfully inform me that there is nothing that they can do for me.

I had a neck and back injury nine years ago which have led to migraines, neck pain, and now the host of celiac disorders. For the last year I have been going from doctor to doctor trying to get some acknowledgement that this is food related. Even now they are only doing tests to humor me I think.

When I shared with my doctor things that I have read about celiac, such as anemia being related, headaches and thyroid disease, she dismissed them as not being related. Why is this? What is it that I am missing in the medical community? It seems like a doctor would rather watch you suffer than try to help yourself

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

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

Many doctors are not very up on celiac let alone the things that can relate to celiac.

You could supply that doctor with information about the relation between these problems or you could find a doctor who knows alot about celiac and could fit your needs better.

On the home page of this site if you scroll down there is a link to recommended doctors and you can look for ones recommended by celiacs for celiacs in your state.

Carriefaith Enthusiast
Carriefaith
Posted
What is it that I am missing in the medical community? It seems like a doctor would rather watch you suffer than try to help yourself

The way I see it is that doctors are only human and they will make mistakes and overlook things. They get busy and stressed and unfourtunately we sometimes have to suffer. Also some doctors do not like "suggestions" if you know what I mean. And like Kaiti said, some doctors have not really learned a whole lot about celiac. GI specialists seem to know a lot about the disease. I was lucky and got a GI doc and a family doc that know about celiac, but I know many people were not as fourtunate as me.

If I were in your situation... I would try and find a recommended doctor or get a referral to a GI specalist.

ianm Apprentice
ianm
Posted

All of the dozens of doctors I went to only know how to write prescriptions. If a pill does not exist to fix a problem then the problem does not exist. The medical profesion is no longer about making people healthy. It is only about keeping them coming back for more office visits and more pills. There are a few doctors out there that know abour celiac but they seem to be few and far between.

Carriefaith Enthusiast
Carriefaith
Posted
All of the dozens of doctors I went to only know how to write prescriptions.

I've noticed that a lot here with some doctors... . Most family doctors are very good at diagnosing things like strep throat, infections, chicken pox, IBS, colds, flus, ect. But the more complicated things like celiac, cancer, lupus, fibromyalgia, ect often get overlooked or misdiagnosed as something else.

  • 2 months later...
coeliacinfostand Newbie
coeliacinfostand
Posted

Until recently many medical schools taught that Coeliac was such ar rare disease that a doctor may only see a few cases in a lifetime.

Why, armed with information, would they waste their time looking for it? Only people with the very worst symptoms would be diagnosed, and then, only after every other avenue had been exhausted.

Now SOME doctors are becoming more coeliac aware. When they hear words like, oesteoporosis, anemia, miscarriage, etc, one of the first things they think of is "Coeliac". It is easy to test for, and they can easily rule it in or out as the culpret.

We should all be doing everything in our power to educate doctors. Invite them to your support group meetings. When they see a room full of coeliacs it may change their thinking.

When you have a large number of people a a celiac function, make sure it gets written up in the local press, with a photo.

Keep yourself up to date with the medical journal articles you can access on the internet. Discuss them with your doctor. eg. "I just read this article about most coeliacs being obese when they are diagnosed." etc.

  • 2 weeks later...
aorona Rookie
aorona
Posted

I agree, many doctors do not know enough about celiac disease to even diagnose it. My two sons and I were all diagnosed at the same time as having celiac disease. ( July 2005) I had never heard of this disease until now. My doctor does not seem to be very educated about the disease, so he told me about a celiac support group. This group has given me more information about the disease and doctors than anything else. I suggest you find a local celiac support group and attend a few meetings. These groups should be able to lead you in the right direction.

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

Celiac.com Sponsor (A8-M):


lbsteenwyk Explorer
lbsteenwyk
Posted

Here are some links to information on celiac disease from reliable medical sources. You might print these out and take them to your doctor.

Open Original Shared Link

The CORE slide set is shorter (29 slides)

Open Original Shared Link

Open Original Shared Link

coeliacinfostand Newbie
coeliacinfostand
Posted
Here are some links to information on celiac disease from reliable medical sources.  You might print these out and take them to your doctor.

Open Original Shared Link

The CORE slide set is shorter (29 slides)

Open Original Shared Link

Open Original Shared Link

<{POST_SNAPBACK}>

This is a great set of Slides

I am burning some celiac disease-ROMs to give to doctors in my area, and also to my dentist. My dentist is very skeptical that celiac disease has anything to do with dental enamel defects.

Alan

Merika Contributor
Merika
Posted
Open Original Shared Link

<{POST_SNAPBACK}>

Wow! Very cool! It's free and easily accessible :) I used to work at a medical journal and I can't believe all this stuff's online now!!!

Merika

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    2. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    3. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    4. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
    5. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748
    Jadelucia
    Newest Member
    Jadelucia
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
×
×
  • 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.