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Doctor Who Are Helpful


discouragedmomof5

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discouragedmomof5 Rookie

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


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KaitiUSA Enthusiast

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
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

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
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

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

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.


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lbsteenwyk Explorer

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
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
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

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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