Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Opinions Needed

Roda

Recommended Posts

Roda Rising Star
Roda
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


T.H. Community Regular
T.H.
Posted

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
Roda
Posted
  • Author

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
CarolinaKip
Posted

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
psawyer
Posted

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
Takala
Posted

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
Roda
Posted
  • Author

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cap6 Enthusiast
cap6
Posted

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
celiackitcat
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748
    emoryprose
    Newest Member
    emoryprose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.