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. Russ H
      - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting...
    2. cristiana
      - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi @Charlie1946 You are very welcome. I agree wholeheartedly with @knitty kitty: "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis. I noticed it after standing in cold wind, affecting...
    3. Scott Adams
      - Scott Adams replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      12

      gluten free cookie recipes

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
    4. Florence Lillian
      - Florence Lillian replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fermented foods, Kefir, Kombucha?

      I have had celiac for many years and still had terrible digestion. I cook from scratch, never eat anything with gluten ( A Gut that needs special attention seems to affect many who suffer from celiac) . I made my own Kombucha, it helped my Gut much more than the yogurt I made but I still had issues. Water Kefir did nothing. As a last resort I made MILK Kefir...
    5. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      @cristiana Hi, thank you so much, I will look into those books for sure! And get bloodwork at my next appointment. I have never been told I have TMJ, but I have seen information on it and the nerve issue while googling this devil plague in my mouth. Thank you so much for the advice!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,910
    • Most Online (within 30 mins)
      7,748
    probinson3870
    Newest Member
    probinson3870
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      gluten free cookie recipes

      By Scott Adams · Posted

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
    • Florence Lillian
      Fermented foods, Kefir, Kombucha?

      By Florence Lillian · Posted

      I have had celiac for many years and still had terrible digestion. I cook from scratch, never eat anything with gluten ( A Gut that needs special attention seems to affect many who suffer from celiac) .  I made my own Kombucha, it helped my Gut much more than the yogurt I made but I still had issues. Water Kefir did nothing. As a last resort I made MILK Kefir and it has really started healing my Gut. It has been about 2 months now and I am doing so much better. It was trial and error getting the right PH in the Kefir ferment that agreed with my stomach, too little ferment, too much, I finally hit the right one for me. Milk Kefir has the most probiotics than any of the other. I can't find my notes right now but there are at least 30 probiotics in Kefir, Kombucha has about 5-7 and yogurt around 3 if I recall correctly.  I wish you all the best, I know how frustrating this condition can be. 
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @cristiana Hi, thank you so much, I will look into those books for sure! And get bloodwork at my next appointment. I have never been told I have TMJ, but I have seen information on it and the nerve issue while googling this devil plague in my mouth. Thank you so much for the advice!
×
×
  • 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.