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Long Wait To See Doctor

mrsry

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mrsry Rookie
mrsry
Posted

I am so frustrated with the medical system right now that I want to cry. I have been waiting months for an appointment with my gastroenterologist so I could get tested for Celiac.

I can't remember how I first made the connection between my symptoms and gluten, but once I eliminated it from my diet, my life changed completely. I have had a severe migraine problem that has put me in the hospital a few times and my neurologist hasn't been able to do anything for it, but it has pretty much disappeared. For years I have had stomach pain that doctors couldn't explain. My skin also cleared up. Everything felt better.

As I got closer to the appointment, I tried to add gluten back so that I wouldn't get a false negative on the blood panel. It has made me feel so ill, though. I can't believe I used to feel this way. It's no wonder I used up all of my sick days each year; I had to take today off too. So I called the office and asked if they had any cancellations today or this week, and they refused to let me come in a week early to talk to him or take the test. My primary care doctor has long since refused to discuss anything related to my digestive system.

I just can't keep eating gluten anymore--test or no test--and if he says to try again later so he can do a test I will be upset. He is supposed to be one of the best gastroenterologists in the area, so why do I have to go through this?

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hathor Contributor
hathor
Posted

The simple answer is that you don't have to go through this. You could bag the idea of having traditional testing done for celiac and just go with continuing the diet that has had such a positive impact on you.

Imagine negative test results now. Would this make you start eating gluten? If not, what is the point of making yourself sick to take the test?

How long were you gluten-free? And how long has it been since you reintroduced it to your diet, and in what quantity? You might have to have a lot more gluten over a much longer time period to get a valid result. Is it worth it? Particularly since there are plenty of false negatives?

If you want a test, you can go with Enterolab. Those tests are sensitive enough to give you results up to a year after eating gluten. They also have tests for intolerances to other foods that frequently the gluten-intolerant have problems with.

Ursa Major Collaborator
Ursa Major
Posted

I agree with Hathor. If gluten makes you that ill, stop eating it. You know it makes you sick, no tests needed to figure that out.

And if your primary care doctor refuses to talk about your digestive system, it is time to find a new doctor. Besides, why hasn't your primary care doctor ordered the Celiac panel to begin with? That is what is usually done, and then people see the gastro only for the endoscopy and biopsy, either to confirm what the blood test says (not necessary as far as I am concerned) or because the blood tests were negative, but the symptoms are there.

It appears you have uncaring, ignorant doctors, just like so many others here.

happygirl Collaborator
happygirl
Posted

It may be beneficial to contact a local support group for a list of doctors that their members go to for Celiac.....maybe one is a GP that could get you in quicker for the blood work.

mrsry Rookie
mrsry
Posted
  • Author

I talked to my husband because he goes to the same specialist. He told me to call the doctor's clinical nurse, so I got ahold of her and told her what was going on. She explained to me that he is out of the office until the day of my appointment, but got his approval to order the tests so that the results would be ready for us to discuss at the appointment. Since I've gotten some of the worst pain and discomfort under control, I think I'll go back to work tomorrow and have the bloodwork done after work.

I've noticed that because my doctors are part of a university hospital, the primary care doctors are often residents, and they know that their patients have access to better specialists. So rather than deal with liability for things they don't know yet, they just shuffle us off to someone else. The specialists in turn have such a long waiting list of patients that their clinical nurses handle most of their work. It's no wonder I've had to come up with my own diagnosis.

happygirl Collaborator
happygirl
Posted

when you talk to them, verify that you are having the FULL 5 Celiac blood panel run. Many doctors only run part.

Taken from Columbia University: Open Original Shared Link

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Best of Luck!!!

mrsry Rookie
mrsry
Posted
  • Author
when you talk to them, verify that you are having the FULL 5 Celiac blood panel run. Many doctors only run part.

Taken from Columbia University: Open Original Shared Link

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Best of Luck!!!

Looking at the lab orders, I'm having all of those. Thanks for letting me know!

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Gemini Experienced
Gemini
Posted
I agree with Hathor. If gluten makes you that ill, stop eating it. You know it makes you sick, no tests needed to figure that out.

And if your primary care doctor refuses to talk about your digestive system, it is time to find a new doctor. Besides, why hasn't your primary care doctor ordered the Celiac panel to begin with? That is what is usually done, and then people see the gastro only for the endoscopy and biopsy, either to confirm what the blood test says (not necessary as far as I am concerned) or because the blood tests were negative, but the symptoms are there.

It appears you have uncaring, ignorant doctors, just like so many others here.

Completely off the subject here.....Ursa, that Black Forest Cake is making my mouth water! Did you do that yourself?

For the unfortunate lady with the long wait......I understand how you feel. I ended up paying for the blood work, out of pocket, at another doctor's office I had been to in the past, so I could get some fast results. I was sick as a dog and the stupid gastro people told me there was a wait to see the doctor. Wait?!?! At that point, I was losing 1 pound PER DAY and would have died from malnutrition had I waited. My blood work was very high so I went gluten-free immediately and have never felt better in my life.

Trust what your body is telling you...like everyone said here, you don't need a doctor's permission to eat what you want. I wish you luck and hope you feel better soon.

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