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Advice On Bringing Up Concerns With Gluten To Doctors

Sunshine Sassie

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Sunshine Sassie Rookie
Sunshine Sassie
Posted

Hi everyone,

 

I had my first GI appointment today (for colonoscopy) but the GI seemed to think my case wasn't severe enough to do a colonoscopy; or any other tests. I am pleased to hear that information (was not looking forward to a colonoscopy) but disappointed that he would not run any other test (x-ray, etc.) I feel like I am in too much pain for it to just be IBS. He prescribed me an anti-depressant to help cope with the pain and told me to take Miralax once a day for a month and then come back.

 

I have been experimenting with gluten since May and know that it contributes to my pain if not is the cause. I didn't bring it up to him because I felt like he had his mind made up that I have IBS and was scared to say anything.

 

Does anyone have any advice on bringing up gluten to your doctor? I feel like the doctors don't understand how severe my symptoms are and do not take me seriously. I may have a complex about it because I am only 25.

 

I am eating gluten every day to be tested; if I ever get the courage to bring it up to my doctor. I have had a blood test when I was not eating gluten and it came back negative and IGA deficient.

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Georgia-guy Enthusiast
Georgia-guy
Posted

Sunshine,

First of all, welcome! (As I do not think I have seen any of your prior posts)

Like you, I have had issues with my doctors believing things I say. It's been a long journey that has ultimately lead to me having to get an pay for blood work at a private lab. I do not wish that upon you, and I do t really recommend it.

As far as what you can do to get your doctor to listen and at least consider gluten as the problem, start keeping a "food and symptom journal". Write down exactly what you eat, when you eat it, any symptoms that start, when they start, how long they last, and every doctor's favorite question "how bad on a scale of 1-10?" Doing this will give you some ammunition to bring to your doctor showing gluten may be the problem. You may also want to do things like have pasta tonight, then in a few days make the exact same dish with a gluten free pasta and toppings to see if there are the same symptoms. when recording symptoms, I would recommend using the side of caution. If anything feels out of how a 100% healthy person would feel, write it down as a symptom. Do NOT be afraid of your doctor, your doctor works for YOU, not the medical facility. If your doctor ignores your complaints, you may want to find a new one. Try doing some research to see if there are any doctors in your area that specialize in celiac disease. You can also look for a local celiac support group and if there is one, ask them want doctors their members use (and definitely see if you are welcome to come to meetings!).

Keep in mind as well that being IgA deficient (I'm guessing you got that from a "total IgA test" showing a deficiency) is rather common with celiacs. Since that is the case, I would ask that the doctor run the IgG based tests next time. By any chance do you happen to have a copy of the actual results from the last test and the lab "normal" ranges?

(As a side note, I no longer feel like the baby on here as I am 25 as well.)

nvsmom Community Regular
nvsmom
Posted

Yes, GeorgiaGuy has s right. With low IgA, you'll need the IgG based tests which are tTG IgG, DGP IgG, EMA IgG (if available), and ay be the old AGA IgG. The IgA based tests will almost always be falsely negative in a celiac with low IgA, which occurs in 5% of celacs.

You'll need to keep eating the gluten for about 8-12 weeks for the tests to be accurate.

Good luck with the doctor. I understand about doctor nerves, I actually did a home test and brought it in to my doctor for proof (it was an IgA based test so it would not work for you).

Best wishes.

Jmg Mentor
Jmg
Posted

Does anyone have any advice on bringing up gluten to your doctor? I feel like the doctors don't understand how severe my symptoms are and do not take me seriously. I may have a complex about it because I am only 25.

 

I am eating gluten every day to be tested; if I ever get the courage to bring it up to my doctor. I have had a blood test when I was not eating gluten and it came back negative and IGA deficient.

 

This is what I wish someone had told me at round about your age, maybe a little earlier.

 

Doctors earn their status but they're not infallible and no GP can know everything about every condition, it's impossible. They are all under time / cost pressures and however well meaning will naturally want to progress your case and move on to the next as quickly as possible. 

 

No-one will ever know as much about your body as you do and no-one will ever have a bigger stake in getting the right answers. Be confident and assertive, if your body is telling you something then trust it and make sure you communicate it clearly to your Doctor. By all means take the prescribed medicine and advice but don't allow yourself to be fobbed off with something that will treat a symptom without also if possible making some progress towards determining its cause.  

 

If your eating gluten now it would make sense to make an appointment for a test so, if it does turn out to be a problem for you,  your not doing that for longer than strictly necessary. So make that your goal for your next appointment, write down some bullet points if that seems helpful. Get the test scheduled and take confidence from asserting yourself and taking ownership over your health.

 

That's pretty much what I'm doing now, I just really wish I'd done it years ago as the various symptoms I've experienced have had a big impact on me. 

Best of luck, hope you get the answers you need :)

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