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Roda

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Roda Rising Star

My son's NP called in a Rx for Augmentin liquid for his sinus infection. The pharmacy was great in contacting the manufacturer for me about it's gluten free status. This is what the manufacturer said (it is a generic company) "one or more of the ingredients could be derived from wheat, but the end product should be gluten free." Would any of you chance it or try to find another brand? I didn't get it because I was uncomfortable. The NP rewrote the script for pills so we will see what we can find out about those. I've not had this much trouble with my meds. I do get that they can't guarantee something is 100% gluten free, but I have had manufacturers tell me if any ingredients are derived from gluten containing ingredients.


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T.H. Community Regular

I would rather be safe then sorry, in this case, too. Of course, I'm sensitive enough that I've had reactions to 'gluten free' meds, and then had to go back and call to find out that they had wheat derived ingredients. I've even been glutened by meds that had no gluten ingredients, but had ingredients that are often gluten contaminated...but they're not even checked for gluten because hey, they didn't add it, so it couldn't possibly have any, right? <_<

And considering that medications are not bound by the same laws as food when it comes to disclosing allergens (I don't know what the current law for them is, only that it's not the FDA's law), well...I think you made the right choice, frankly.

Roda Rising Star

Thanks for your reply. I ended up going to the pharmacy that the customer service sucks and getting his RX in pills instead. They at least told me what they had in stock and gave me the manufacturer number. I called and the rep said that in the pills there were no gluten containing/derived ingredients so I got that one. Luckily he can swallow those horse pills. :P

CarolinaKip Community Regular

My son's NP called in a Rx for Augmentin liquid for his sinus infection. The pharmacy was great in contacting the manufacturer for me about it's gluten free status. This is what the manufacturer said (it is a generic company) "one or more of the ingredients could be derived from wheat, but the end product should be gluten free." Would any of you chance it or try to find another brand? I didn't get it because I was uncomfortable. The NP rewrote the script for pills so we will see what we can find out about those. I've not had this much trouble with my meds. I do get that they can't guarantee something is 100% gluten free, but I have had manufacturers tell me if any ingredients are derived from gluten containing ingredients.

My pharmacy is good about checking for me gluten-free drugs, however....when checking for a generic drug, it is much harder. One company actually told them they were reasonible sure it didn't have gluten. I asked the pharmacist, "would you give a drug to a diabetic if the drug company said I'm reasonible sure it's sugar free"!!!!!!! same thibng! No..I passed and spent $20 to get name brand that was gluten-free!

psawyer Proficient

I asked the pharmacist, "would you give a drug to a diabetic if the drug company said I'm reasonably sure it's sugar free"!!!!!!! same thing!

Diabetic (Type 1) speaking: It is not the same thing at all.

Sugar does not trigger an autoimmune reaction. It does not cause antibodies to be produced. It does not cause my body to be attacked and damaged by those antibodies. When properly balanced with insulin, small amounts are safe. A small quantity of sugar in a medicine I take once a day will not do me any harm. Gluten is a very different matter.

Now, if you think this falsehood may scare your pharmacist into paying attention, go for it. But realize that it is just that--an incorrect analogy.

Takala Enthusiast

Have mercy on us down here in the States. I don't know what it's like up there, but when we try to get a Rx script filled here in Profiteeria Land, we may very well be speaking to a store clerk or two on the way to being passed to the pharmacy consult, who has no idea whatsoever what we are talking about. They graduated from High School and make minimum wage. If you are lucky. They really do not understand "gluten" or "celiac," let alone "auto immune reaction," even if I do a quick explanation, trying to enunciate in my Best Cheerful Voice. "I can not have wheat, rye, or barley ingredients. Does this medication have any ?" It's better to say "allergy," which gets their attention because they can sort of grasp the concept of "immediate reaction of illness." If I said "antibodies" they'd say this was an antibiotic medicine so don't worry. The last time the ding a ling says "oh, there's cellulose, that's not it, is it ?" :blink: At which point my inner **** comes out and I get very, uhm, nice and demand to speak to the Pharmacist please so we don't accidentally make me very sick.

We don't have any such thing as an insulin to act as a buffer to counter react to the accidental exposure to what our bodies cannot tolerate, nor those handy little test strips to tell us with a blood drop if we've been glutened, and by how much we are off. :(

Roda Rising Star

I still think it is a crock of !@#$ that RX medications don't have to list, at the very least, the top 8 allergens and gluten. Of course I don't really know how many of those would be used in meds.


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cap6 Enthusiast

I have had to change from generic to brand name on a couple of my meds. One generic I discovered was manufactured in India & ingredients were questionable. That's a little to iffy to take a chance on.

celiackitcat Newbie

I personally would have done the same thing and not taken the medication. I hate having to deal with the pharmacy regarding any of my prescriptions. Last time I needed an antibiotic, it was a generic that did not come from the normal manufacturer that I know to be safe. It was the middle of the night and I couldn't get through to anyone at the manufacturer (I left them two messages and never heard back). I called the pharmacy and spoke with a pharmacist who was trying so hard to be helpful but was completely clueless. He did read me all of the ingredients but he didn't know what to look for. He ended up calling around to multiple other branches of their pharmacy in the area and found one that had the medication from the manufacturer I knew was safe. I was out some money because they wouldn't take back the first bottle but it didn't matter.

Kinda annoyed right now though, because I had never realized that the manufacturer never called me back.

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    • catnapt
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    • knitty kitty
      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
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    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
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