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Disappointed, Irritated, Depressed, Miserable

hermitgirl

By hermitgirl
in Coping with Celiac Disease

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hermitgirl Contributor
hermitgirl
Posted

So I have been doing really well as of lately. Went to an allergist last week and he gave me some antibiodics as he was concerned that I had a minor infection, and wanted that cleared up before testing next week. Since starting the antibiodic, I have literally bloated 15 pounds, and it of course is all in my belly, my migraines are returning, heartburn is back and appetite is off the rictor scale. My blood pressure is skyrocketing, I am beyond exhausted, and my anxiety attacks have returned. When I got home last night, I checked, and the particular antibiodic and manufacture is not on any safe list that I can find. I started to panic and looked at the last prescription I had filled and it isn't on any safe list either. I called the pharmacy, and asked if someone had removed the Celiac flag from my account, and the pharmicist asked why. When I told him that I just verified that the last two prescriptions they filled had gluten in them, he told me that I needed to ask whomever is checking me out if they have verified the gluten status. He then proceeded to ask me why I didn't ask. I have been having my prescriptions filled since diagnosis at this specific pharmacy. As everything is set for auto refills, and my account is supposedly flagged I didn't think it was a necessity at that time, but obviously I was wrong. I lost it and started to cry. He then told me he was going to have to refill my last 2 prescriptions again, as he checked and they were not safe. Then told me to stop taking both immediately. He did comment that on my account it did say that they could only order one of those from a specific manufacturer, which the person filling my last prescription didn't do. Yes, I know that it is completely my fault, but my question is what about people with a wheat allergy, and wheat is being used as a binder? So besides feeling crappy physically, now I am more upset than ever. I need a hug.

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KathiSharpe Apprentice
KathiSharpe
Posted

:::hugs::::

You might call the pharmacist back and ask him if he'd be responding differently if it was your relative's lawyer calling to report your death and a lawsuit...

Then you might cheerfully fill out the paperwork to file a formal complaint with Those Who Govern Pharmacies.

We should have the right to be safe (or as safe as possible) in the medicines we take.

That said...

I once had the pharmacy manager at my house with replacement drugs at 9pm because they'd filled a prescription with a drug that could kill me. The pharmacist had seen the flag, too :shrug:

It PAYS to watch these people because they surely aren't going to watch out for you. :angry:

ravenwoodglass Mentor
ravenwoodglass
Posted

((((((((((((((HUGS)))))))))))))) Unfortunately things like this happen. One thing that you should do is contact the FDA's site to report adverse effects from drugs, I have given you the link below and there is a place on the left of page to report on line. If enough reports are made perhaps someday the FDA will ban the use of wheat based starches as binders in our drugs or at least make it easier to identify when it is in a drug.

Open Original Shared Link

One thing I have found that helps is to have the doctor write the words gluten free right on the script. I also stress each time I go in that they have to check the gluten statis of the drug. Then since I do tend to err on the side of safety I call the makers number from the drug sheet when I get home. We really should not have to do any of this but like you I have been made sick by a script, very sick, and I really don't completely trust that things will be checked as throughly as they should be.

I do hope you are feeling better soon.

merry0709 Newbie
merry0709
Posted
So I have been doing really well as of lately. Went to an allergist last week and he gave me some antibiodics as he was concerned that I had a minor infection, and wanted that cleared up before testing next week. Since starting the antibiodic, I have literally bloated 15 pounds, and it of course is all in my belly, my migraines are returning, heartburn is back and appetite is off the rictor scale. My blood pressure is skyrocketing, I am beyond exhausted, and my anxiety attacks have returned. When I got home last night, I checked, and the particular antibiodic and manufacture is not on any safe list that I can find. I started to panic and looked at the last prescription I had filled and it isn't on any safe list either. I called the pharmacy, and asked if someone had removed the Celiac flag from my account, and the pharmicist asked why. When I told him that I just verified that the last two prescriptions they filled had gluten in them, he told me that I needed to ask whomever is checking me out if they have verified the gluten status. He then proceeded to ask me why I didn't ask. I have been having my prescriptions filled since diagnosis at this specific pharmacy. As everything is set for auto refills, and my account is supposedly flagged I didn't think it was a necessity at that time, but obviously I was wrong. I lost it and started to cry. He then told me he was going to have to refill my last 2 prescriptions again, as he checked and they were not safe. Then told me to stop taking both immediately. He did comment that on my account it did say that they could only order one of those from a specific manufacturer, which the person filling my last prescription didn't do. Yes, I know that it is completely my fault, but my question is what about people with a wheat allergy, and wheat is being used as a binder? So besides feeling crappy physically, now I am more upset than ever. I need a hug.

Sorry to hear of your problem. The deal is, if you have never been sick with this crap, you just don`t understand. People look at you like you are making it up for pity or something half the time, like you are some picky whiney psycho. I had one guy told me he was sick of me being so picky about what I ate. I have been dealing with this over 5 years now, and have gotten to be pretty millitant about it. I don`t make a big deal out of it but just say, I got alot of food sensitivities, and try not to even talk about it alot. Hey, you are the one that has to deal with being sick and deal with your own health. Half these M.D.`s are clueless most of the time about what they are prescribing, and don`t know about the manufacturing. I know2, I had a few doctor boyfriends, and let me tell you, they aren`t God. You have to double check everything, and be responsible for your own wellness. Our medical system is a big mess. Best bet is to try and stay as healthy through diet and lifestyle and try to stay off any kind of meds. that is what I do. Do what you need to do lifestylewise to get as healthy as possible and try not to take pills if you don`t have to.

mysecretcurse Contributor
mysecretcurse
Posted

Oh hunny {{{HUGS}}} This is NOT your fault. I'm so sorry you've been glutened so severely. This disgusts me. I agree with the others about what you should do. I hope you feel better soon.

<3<3

Lawspike Rookie
Lawspike
Posted

I have JUST been diagnosed several weeks ago, after suffering for close to my entire life (35 years, almost).

HUGGGGGGGGGGGGGS ...

I could have written your post, and more. I am at my rope with the ignorance and insensitivity with coping with the challenges of this disease - I COULD SCREAM.

I sure hope you get through this glutening as soon as possible, and with as minimal suffering as possible...

HUGS

Welda Johnson Newbie
Welda Johnson
Posted

Dear Hermitgirl,

At first I resisted reading your post, because of your admission that it would be filled with whining, etc. But I knew I would read it, because that is how we've all felt at some time or other. Believe me, you are a mild-mannered person, whether you realize it or not. It seems you may feel bad for crying on the phone--how else will the pharmacist know how deeply his employee's inadequacies affected you? I've found crying to be SUCH a wonderful relief at times like that--everything that I always hold so closely inside comes tumbling out! Our emotions are our guideposts--we might as well share them with others. Why keep them to yourself?

I've been on this path of restricted foods for a long time, and am just realizing what a tremendous impact having to take care of myself has had on my ability to "speak up for myself." As a grandma, mother, sister, auntie & friend, I know the things to do to spoil others and take care of them, but I'm just awakening to the fact that if I really want to be spoiled I'd better spoil myself a little, since I'm the only one who really knows just what I need at any given time.

Right now I hope that you will realize that taking care of your health is a life and death matter. The person who commented that the pharmacist was lucky that it wasn't your lawyer calling to say you had died was right on in my opinion. As you learn the foods you can more easily tolerate, perhaps you will be able to get away from those antibiotics and prescriptions--I used to take 13 pills a day for Asthma, and now I'm down to 3. It feels so good to be free of those other 10! I now eat mostly fresh fruits and vegetables, and find that keeping with the basics works well for me. I'll be thinking of you as you traverse this path, hoping and praying that you get in touch with your inner resources and Strength. Welda

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ranger Enthusiast
ranger
Posted

That's a terrible and unneccesary way to get glutened. I hope it passes quickly - Mine usually last 3 days. The problem in Ohio is that the pharmacy board is manned by pharmisists! Something like the old fox guarding the henhouse. Very few complaints are ever acted apon. Check your states regulations. Hope you feel better.

Mtndog Collaborator
Mtndog
Posted

You are not whining at all! I'm sorry you feel so bad but am curious what antibiotic it is and who the manufacturer is. You could save others some potential suffering if you told us (I have Lyme and am always on a new antibiotic!)

Hang in there- it happens to all of us and it is so so so frustrating- especially when it makes you feel THAT bad. :( :(

hermitgirl Contributor
hermitgirl
Posted
  • Author

The last thing on my mind was the name of the manufacturer. It is Aurobindo, and the antibiotic is cefuroxime, 500mg. They also manufacture a simvastatin that is not safe either. My pharmacist has apologized profusely, and is making extra notes to prevent this from happening again. Now that I am starting to feel better I am able to use common sense again.

Mtndog Collaborator
Mtndog
Posted
The last thing on my mind was the name of the manufacturer. It is Aurobindo, and the antibiotic is cefuroxime, 500mg. They also manufacture a simvastatin that is not safe either. My pharmacist has apologized profusely, and is making extra notes to prevent this from happening again. Now that I am starting to feel better I am able to use common sense again.

Did they confirm it definitely has gluten in it? I've taken ceftin before and it was gluten-free. I'm wondering if you had a bad reaction to the antibiotic and not gluten. Ceftin belongs to a family of antibiotics called quinolones and they are really harsh- and cause all the symptoms you mentioned. I can't take anything from that entire family because the same reaction happens to me.

Either way I am very glad you are feeling better!

ElleReigh Newbie
ElleReigh
Posted

This is always a tough situation for me, a Celiac pharmacist.

I have been on both sides of the issue- trying and failing to get a pharmacy to look up info for me, getting sick on meds that I couldn't get any info about (the requisite Z-Pak and ibuprofen from the urgent care on a Friday night...), but also calling companies and trying like crazy to get some sort of gluten information for my patients. If anyone else has done it, you'll agree that it is harder than it sounds. Many companies will not tell you anything either way, although they are getting better.

My advice, though I do everything I possibly can to educate my fellow pharmacists about gluten, is to NEVER assume that someone else has looked into the gluten issue. You have to take responsibility for your own health. I'm not saying that it should be that way, but that's how it is for now.

There have been a few articles in recent pharmacy literature highlighting Celiac and gluten in meds. I just wrote a continuing education article for pharmacists about inactive ingredients, including a discussion of Celiac/gluten. We'll get there! Until then, be vigilant. Which is hard, when you're sick and impatient at the pharmacy counter. Been there.

ElleReigh Newbie
ElleReigh
Posted
Ceftin belongs to a family of antibiotics called quinolones and they are really harsh- and cause all the symptoms you mentioned.

Actually, Ceftin (cefuroxime) is a cephalosporin. There are quite a few different generic forms, so it is possible that gluten could be in one of the formulations.

I do agree, though, that it can certainly cause GI upset/diarrhea/cramping.

hermitgirl Contributor
hermitgirl
Posted
  • Author

Not thinking it was the antibiotic itself, as when he gave me the same antibiotic from a different manufacture that he verified as gluten free I didn't have a recurrance if issues. I have continued to get better, yet have been on the different manufacturer's version since Thursday. I took my last dose yesterday, as they had to extend my days on it. I know many antibiotics can cause cramping and diarrhea, neither of which I had, nor have had since changing manufacturers.

darlindeb25 Collaborator
darlindeb25
Posted

Elle, I have a celiac pharmicist, and she's great. She has my name on her computer monitor, along with a few others. If I come in and she is really busy, she will give me the number to call, so I can verify before she fills the script. I take Wellbutrin, which I am thinking I want to get away from. Any ways, my neuro increased the dose, and her associate was on duty. When I stopped to pick up the med, she said she had a call in, but no answer yet about the gluten status, and wouldn't give me the med without knowing. I truly appreciate that.

My doctor had me get Azo Standard, and otc med for bladder infdection pain. Everything I could find on it either stated gluten free, or maybe's. I was in pain, so I tried it. Three doses, and I had a full blown neurological reaction to it. The Azo company swore it was gluten free, until I asked about their fillers, they had no idea what was in the fillers, so, they gave me a full refund. Which yes, a refund is good, but, did they change anything? I will never try it again. I was sick for 3 months, and lost 24# from that glutening.

As someone stated (sorry, my memory is not good as of late), we do need to let the powers that be know these products need to be wheat free, actually, gluten free. I find it sad, if you are diabetic, you are watched out for, why not us too. A diabetic can have a little sugar, we CAN'T have gluten.

Feel better.

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