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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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    • trents
      Welcome to the forum, @Mmoc! Please include the reference ranges for the IGA and the TTG tests in your next post if you have access to them. We cannot comment much otherwise as different labs use different reference ranges for these tests and also different units of measurement. There are no universal standards as of yet so the raw test numbers are not always helpful. Having said that, if your IGA (what we usually call "total IGA") is low, the TTG-IGA score will be skewed and cannot be trusted. Other kinds of tests for celiac disease would need to be run, particularly those in the IGG family of tests. Perhaps this will be helpful:  
    • Mmoc
      Hi there any advice welcomed. I have had 4 years of symptoms ranging from immune related anaphylactic symptom sudden onset food allergy to peppers/paprika/chilli/capsicum family derivatives. all these allergies fizzled out and following a food challenge test in hospital I reintroduced them a few months ago. Since then my digestive system is a mess. i have since noticed that 4 years ago when testing for iga allergies my iga level was .62 and my ttg was less than .1 (due to symptoms I was probably eating very plainly at that time). should I insist on being retested for celiac? I’ve since read two indicators for celiac include: sensitive to spicy foods when in flare up tooth enamel weakness and symmetrical discolouration patches on teeth which I have had since childhood on my two front teeth     thanks
    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
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