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Dr Glutenator

Tallforagirl

By Tallforagirl
in Coping with Celiac Disease

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Tallforagirl Rookie
Tallforagirl
Posted

I was recently diagnosed, and am still trying to recover from the symptoms of Coeliac, mainly for me that has been nausea.

My doctor has me as his one and only Coeliac patient, and on Friday prescribed me some anti-nausea medication. Whilst waiting for him to print the prescription, I asked him whether the medication was gluten free. He didn't say anything and I assumed he'd heard me.

Today I took half of one of the tablets, and then thought I'd better double check the ingredients, as the packet didn't specify "gluten free".

I was dissappointed and angry to find that one of non active ingredients is WHEAT STARCH.

Glutened by my doctor.

Fellow Coeliacs be reminded by this: double check stuff, don't take anyone's word for it (especially a non-Coeliac).

Lucky I only took half a tablet, and will not take any more. Will definitely NOT be going back to that doctor again.

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mushroom Proficient
mushroom
Posted

The labeling for medications stinks. You would be amazed at how many of them contain wheat. You have the right idea--check 'em all before you take 'em.

ravenwoodglass Mentor
ravenwoodglass
Posted

If you are happy with this doctor otherwise please keep him. You most likely will not be able to find a doctor who does know for sure if a script is gluten-free anyway. The labeling regs for drugs and supplements are very lax and when it comes to the binders and inactive ingredients well they can be changed at will. What you need to do is to find a good pharmacy that will take the time to check. In addition you should always get the actual fact sheet that comes with the drug and then call the company that makes it yourself if you have any doubt. If a drug is generic then it will need to be checked at each refill. If it is a name brand drug still under patent restrictions the binders will have to stay the same as long as that patent is in place. It is best to always double check if you use a gluten free drug list as those are out of date the day they are printed.

ek327 Newbie
ek327
Posted

I would find someone new. I am a nurse practitioner, and I do check online regarding gluten free status of meds that I am prescribing for my celiac patients. I also note that on the prescription so that the pharmacy is aware if they are filling it with a generic equivalent.

Maybe it helps that my daughter and I are celiac, and I am aware...

Lisa16 Collaborator
Lisa16
Posted

Unfoprtunately this disease means that you are going to have to protect yourself this way too. It is true many doctors do not know.

There is, however, a list of gluten free drugs online that is pretty handy-- just google it. It might not be up to date, so if your drug isn't there, call the manufacturer. One generic company (the name escapes me right now)always uses corn or rice starch and one is iffy (TEVA-- some are safe, some not). Some pharmacies only deal in one generic brand.

You will also need to make friends with your pharmacist and they can check for you. Strangely, a number of pharmacies are not connected to the internet and cannot check that way. But they can call.

I will tell you a "funny" story. My ortho guy ordered prednisone for me. But the only gluten free format that had was a slightly different formulation. So after calling the doctor and confirming they could change the script a little bit, TWO pharmacists got out an enormous book (this thing probably weighed 30 pounds!) and calculators and starting doing a "steroid conversion" by hand. They gave me the dose and I went home. I took it.

The next day they called to tell me they had accidentally given me a DOUBLE initial dose. Sheesh! A mistake liek this can kill you.

With this disease these things are going to happen and you have to watch your own back. My current doctor is not the most celiac saavy either. It is just the reality of it.

Lisa

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