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

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

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.


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



Celiac.com Sponsor (A8-M):



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.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.