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

Prescription Medication Insecurity


Guest hungryman

Recommended Posts

Guest hungryman

Whenever I start a new medication, I try to check it out to make sure it is gluten free. To date I have been gluten free, but recently ran into a difficulty.

When checking out a new set of medications, I found one to which the manufacturer, Glaxo Smith Kline, said they are not sure if it is gluten free.

It is called Combivir and is a combination of two drugs that can be obtained seperately. I know the individual drugs are gluten free.

I have taken Combivir, and I don't think I have had problems from it. But I can't be sure because the drugs can cause problems similar to being glutened.

So, should I switch to the individual drugs or stick with the combination pill?

:(


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



Celiac.com Sponsor (A8-M):



psawyer Proficient

In my experience, it is quite rare for gluten to be intentionally included in a pharmaceutical product.

Most manufacturers purchase raw ingredients, such as corn starch, from outside suppliers, and do not test them for possible cross contamination. So if you ask, they are unable to guarantee (be sure) that it is gluten-free. Unless they test everything they buy from someone else (and even what the make themselves) they cannot be "sure" that it is gluten-free.

These statements are couched the way they are to protect the company from liability issues if at some point there is cross contamination present. If a pharmaceutical manufacturer says they don't have any known gluten ingredients, then that is sufficient for me.

I would use the product.

mysisis Newbie

I was able to obtain information last month from the research department of an insurance company. curiously, when they were my insurance company they had no knowledge about gluten in medication, but as soon as i switched companies, they were quite helpful and provided me with this information. It says:

"The FDA does not require any mention of gluten in drug labels. Most of the gluten in drugs comes from inactive ingredients obtained from whole grains, grain flour or starch grain. Inactive ingredients such as starches that are derived from corn or potato sources should be acceptable(unless there is a contamination with gluten); unspecified or "pregelatinized" starch , dusting powder or flour may be derived from wheat. The source of an inactive ingredient can be changed without changing the label.

Sweeteners used in pharmaceutical products may also be sources of gluten. Uncontaminated sucrose, honey, detrose, fructose and corn syrup solids should not be problematic."

It goes on that : fillers "should be acceptable if not contaminated with gluten."

Then it gets to the meat and potoes of the matter:

"what manufacturers know: some pharmaceutical companies that responded to a survey reported that they believed their products were gluten free but could not guarantee it, in part because the supliers of the raw materials could not guarantee that their materials were gluten free. OBTAINING gluten-free drugs- information about the gluten content of phamacuetical products can be found on websites such as www.glutenfreedrugs.com. However, it may also be advisable to ask the manufacturer whether a specific product is or continues to be gluten free. In making these inquiries, providing the drug's lot number is generally helpful. If all else fails, a compounding pharmacy may be able to provide gluten-free products." Then, their "CONLUSION-Gluten in drugs as well as in food & cosmetics can be a problem for patients with celiac disease. Drug labels may not be helpful because the source of inactive ingredients can be changed without ghanging the label. Even some manufacturers may not know whether their products are gluten-free."

OK- so that is what the insurance provider has!!! Very illuminating! I recall there was an article in the last month or 2 on one of the celiac sites about just this thing. It was about the "excipients" in medicines and had info to print out for your pharmacists; you may be able to find it in a search. I've been wrestling with getting the new insurance company to give me name brands, because the generics keep changing their excipients, and the pharmacy has to go with whichever generic company they are commanded to go with, which makes me a neverending guinnea-pig. There is a list of the name brands that are gluten free, but the generics are forever ghanging their recipes. Besides the perfumes or possible cross cotamination possibilities, here are the ingredients that COULD be possible problem causers. DEXTRIN (can be from rice or tapioca or WHEAT-and they don't have to say -or may not even know), MALTODEXTRIN (obtained from corn, potato or rice, or WHEAT and again they may not know and the label won't differentiate), PREGELATINIZED starch(from corn, potato, tapioca, or WHEAT, same story), SODIUM STARCH GLYCOLATE & SODIUM SALT OF CARBOXYMETHYL (usually from potato, corn or rice but can be from WHEAT, and again same thing.) Now, If the drugs you are taking are specifically on the "glutenfree list", then they are fine, and if they do not have these ingredients then the only risk should be any crazy cross contamination. BUT, depending on your sensitivity level, these ingedients are the potential problem causers. What my Dr. has done to try to get the co-operation of the insurance company, is to list these items as medical allergies. It's a long shot, but they do not seem to be getting the concept that they are poisoning me. Some months more than others. The problem you MAY be having is when 2 drugs are combined, sometimes they use a binding agent, and depending on what that binding agent is, it could be problematic for you. I hope that some of this help you. Sorry it's so doggone long though.

slmprofesseur Apprentice

I asked the Kroger pharmacist about some Gluten-free vitamins for my ds. He laughed, yes laughed and shrugged saying there was another lady wanting to know if her prescription medication was Gluten-free. :blink: I don't like to go there when he is working to say the least@!!!!

mysisis Newbie

The kroger affiliate here did the same thing to me. The CVS pharmacist said, "oh, I know ALL abaout Gluten! But it is no t in ANY medications !!!! " Then I went to ocso/albertsons (who I really do not like); they have 2 pharmacists. They rotate weeks. There's a guy on even number weeks who is a... hmm, let's say he knows everything about something but I haven't figured out what that might be. I have circle his work days on my calendar and will not call or go in if he is working. Then there is the other guy. He is BRILLIANT. He is one of those genius type guys that you just know excelled at physics and chemistry, and probably sits at home reading periodic charts for entertainment.He was completely open to the information. He had heard of celiacs but wasn't too familiar with it. When I would find PERTINANT information that applied to him as a pharmacist, I would print it out and take it to him. He has gone out of his way to follow along. Yes, I have guided him I ask him for the package insert for EVERY medication, and together we go through the ingredients to see if any of the items are on the list of possible problem-causers. He has gotten to where he will have already checked the list by the time I go to pick up my meds. If there is a possible problem, h e will try to find a brand or manufacturer who doesn't use the same recipe.

Together we are trying to work the glitches out of the medication drama. The cannot give a diabetic meds with sugar, they shouldn't be able to give wheat to people with wheat allergies.

I'm glad I shopped around for a pharmacist rather than a pharmacy. I don't like the pharmacy, but this Pharmacist is worth his weight in gold!!!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748

    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.