Hidden Gluten, Grains and Nightshades in Meds and Supplements

Hidden Gluten, Grains and Nightshades in Meds and Supplements | Autoimmune-Paleo.com

If you live with autoimmunity, it’s likely you’ve chosen a specialized diet free of substances such as gluten, grains, nightshades, and more. This change can be a big lifestyle adjustment: there’s the emotional component of giving up favorite foods; learning how to make new foods; convincing family to hop on the food wagon with you; perhaps even managing a dual-purpose kitchen that’s gluten-free for you, but not for the rest of the family. Then there’s the task of fielding questions about your diet or resistance to your eating habits at work and in social situations. Understandably, there can be a big sense of relief once we get things dialed in. Whew!

However, even on a squeaky clean autoimmune diet, sometimes people still experience symptoms associated with eating the suspect foods they’ve eliminated. What many folks don’t realize is that hidden sources of these items may exist in supplements and medications, leading to the mystery symptoms. You might ask, “How much could a speck of gluten or corn in a pill actually affect someone?” But if you have celiac disease, non-celiac gluten sensitivity, or a sensitivity to grains or nightshades, you know that the smallest bit is all it takes to throw you down the symptomatic rabbit-hole.

Fillers: Know Their Sources!

Here’s the scoop: many over-the-counter supplements and nearly all medications contain fillers called excipients, that perform several functions: they provide bulk, help with disintegration of the tablet in the digestive tract, or facilitate absorption or solubility of the drug. Some excipients’ only purpose is to increase non-stick properties in production machinery. Many of these fillers are sourced from wheat, corn, barley, rice or potato, but their label names do not reveal their source.

Below are some common excipients to look out for, along with their hidden sources (worth noting is that some of these fillers are found in packaged foods as well: read your labels!). If you’re curious about the source of other excipients, click here.

  • Dextri-maltose (barley malt)
  • Dextrins (primarily corn and potato, but can come from wheat, rice, tapioca)
  • Dextrans (sugar)
  • Dextrose (corn starch)
  • Dextrate (starch – source not listed)
  • Maltodextrin (corn, wheat, potato, rice)
  • Maltodextrin (corn, wheat, potato, rice)
  • Pregelatinized starch (corn, wheat, potato, tapioca)**
  • Sodium starch glycolate (commonly potato, but has other starch sources)**
  • Not fillers, but worth honorable mention: some vitamin E is sourced from wheat germ, and most vitamin C is sourced from corn.
  • Be on the lookout for any starches; they are primarily derived from corn, potato (and tapioca), and they have been known to contain starch from wheat

*Any product containing pregelatinized starch or sodium starch glycolate is to be avoided if not specifically labeled gluten-free.

Issues with thyroid or diabetes? Some factors to keep an eye out for:

  • Some thyroid medications have gluten- or corn-based fillers, which cause immune cross-reactions for patients. Click here for a regularly updated page on thyroid medication ingredients.
  • Reportedly, some oral Type 2 diabetes medications contain gluten; check all ingredients.
  • While a diabetic may not be sensitive to gluten in the same way as someone with celiac disease or non-celiac gluten sensitivity, in the case of Type 1 diabetes, gluten has been shown to cross-react with pancreatic islet cells.

Staying on Top of Labeling

Active ingredients in supplements and medications are monitored and controlled closely by the FDA. Excipients, however, are considered inactive ingredients, and are only required to be in the broader category of FDA-approved substances.

Why does this matter? In an effort to make products more economical, sometimes producers use different fillers in generic medication than in the brand-name version; the FDA isn’t concerned with the details as long as it’s an FDA-approved ingredient. This means that even when you’ve taken the time to research a product’s ingredients, when you switch from brand-name to generic (or vise versa), you need to pay close attention to the new ingredient list, because the fillers may differ.

Even within the generic and brand-name categories, manufacturers change the fillers in products regularly, which means while your current bottle of meds or supplements may have checked out okay for ingredients, you need to keep an eye out for changes when you buy your next one. Be alert for labeling changes such as, “New formulation,” “New and improved,” “New product appearance,” or “New manufacturer.” Even if you don’t see these words, keep an eye out for a new label design when you buy your next bottle; when in doubt, check the new bottle against the old one.

10 Tips for Assuring Safe Ingredients

Below are some guidelines for assuring your meds and supplements remain free of gluten, grains, and nightshades:

1. Read all ingredient labels, even on a new bottle of the same old product. Become familiar with the names of fillers sourced from ingredients you need to avoid, or carry a list of suspect fillers when you shop (this also applies to packaged foods).

2. Keep an eye out for changes in labeling terms and appearance that could indicate a change in ingredients.

3. Remember to periodically re-confirm the gluten/grain/nightshade-free status of all your medications and supplements, regardless of labeling changes. This website contains information on gluten-free medications.

4. If uncertain about a prescription product, ask your pharmacist. Remember that your pharmacist is a drug expert, but may not know the source for an ingredient, so they may need to call the producer to ask.

5. Call the drug company yourself. You can get the contact information from your pharmacist, or find it online. Insist on specific answers to your questions.

6. Remind your doctor that you will be verifying the gluten-, grain-, or nightshade-free status of your medications. In light of this, ask for first- and second-choice medications so you have options. This can save you time, and help avoid problematic gaps in medication when you find out your scrip won’t do and your doctor just left for a six week silent meditation retreat in Madagascar.

7. Your insurance company may not approve a brand-name label when generic medication is available. If you need the brand-name label for health reasons (ie: it’s GF but the generic isn’t), call your insurance company and ask how to get approval for the more expensive medication.

8. If you require an unusual medication that does not offer a gluten- grain- nightshade-free option, find a compounding pharmacy that will make a custom medication for you. They can be surprisingly creative! My compounded thyroid meds are made in a base if ginger powder.

9. Some inpatient medications for surgery, radiology and other procedures contain gluten! Ask ahead about hospital medications; explain the potential risks to your health, and don’t settle for a dodgy answer. Prior to your visit, get firm confirmation that gluten-free meds will be used, and re-confirm upon arrival at the hospital. If you don’t set this up ahead of time, don’t count on the nurses on hand to know what’s in the drugs, or to truly understand the importance of your request.

10. Never settle for an unclear answer about the source for a medication or supplement.

Your Health is a Priority!

If you have lingering symptoms that you think may be related to your medications or supplements , I encourage you to determine the source of their ingredients. One of two valuable things will likely happen; you’ll either experience a welcome removal of symptoms (and know what to avoid in the future), or you’ll know that the problem lies elsewhere AND you now have meds and supps that are clear of suspect ingredients. In the long run of maintaining your health, it’s a win-win for you!

About Susan Vennerholm

Susan Vennerholm is the blogger behind Backcountry Paleo, where she shares AIP-specific recipes and autoimmune-friendly tips for backcountry enthusiasts. She also geeks out on the medical side of autoimmunity, and loves to write about it. Susan wholeheartedly believes that self-education and networking in the AI community are two of our strongest tools in living successfully with autoimmunity. As a way to pay forward the support she received during her recovery, she blogs so that others will have more resources for their healing journey. A certified yoga teacher, code wrangler, and freelance writer, Susan loves climbing mountains, watching Orca whales, trail running, volunteering for dog rescue, and a good fantasy novel. You can connect with her on Facebook and Pinterest.

29 comments

  • andrea massart says

    I have Hashimoto’s disease and live in France, where the only thyroid medication available contains lactose. Also, gluten is basically everywhere.

    • Susan Vennerholm says

      Andrea –

      I read an article recently that stated a generic levothyroxine may become available soon in France. It would be fabulous if it had different fillers than the brand-name version. Unlikely, but we can hope! Has that been in the news?

  • jhon says

    I have been doing really well following the AIP but just realized that the GF tinctures I occasionally take are made from potato vodka! yikes!! I wonder, does the distillation process negate the nightshade factor or should these be off limits? Any info would be greatly appreciated.

    • Susan Vennerholm says

      jhon – I would go with what my body told me, regardless of what food distributors might say about the potential (or lack thereof) for reactions. For example, I am reactive to soy, and although some people say chickens fed soy can’t possibly pass the grain proteins on through their eggs, I DO react to eggs from soy-fed chickens (and I did a blind experiment to determine this, so it wasn’t the power of suggestion).

      Another thing to be aware of in tinctures; if you go for a “grain free”, glycerine-based version, know that glycerine can be sourced from non-AIP items such as soy, canola or corn. A call to the producer should reveal the answer to that.

      • jhon says

        good ideas and advice, thank you
        some times common sense isn’t so common 🙂

  • Sarah Grady says

    From the above note to Diabetics, Type I diabetics take insulin. I believe you mean that oral diabetes meds may contain gluten. Oral diabetes medications are only used in type 2 diabetes.

    • Susan Vennerholm says

      Sarah – Thanks for the catch on that! Yes, I worded that in a way that was confusing, and meant to convey exactly what you said. I’ve changed the text to make it more clear.

  • Tracy says

    What about gluten or other contaminants in silicone and plastics used for CPAP face masks? I have heard of cross-reactivity with components of mouth retainers, but can not find adequate information on other daily/nightly use appliances. I am AIP with Hashi’s and am still having problems — I wonder if this is not one of my issues as I have to wear a silicone/plastic mask strapped to my face every night. I hate it, although it helps the sleep apnea, it scares me to be breathing in the possible contaminants for 8 hours at a time! If you have any information, please share!

    • Susan Vennerholm says

      Tracy – I’m not aware of whether gluten is used in CPAP masks. You may be able to contact the manufacturer for yours, and track down what is used in production, then reference those materials against online lists of gluten-free substances. I have heard of a cloth version of the CPAP mask, but I don’t know what exactly it’s made of or if it has any coating that may be toxic.

      I certainly hear your concern over potentially inhaling toxins via the mask. Many people complain of skin reactions to the silicone masks, but I doubt many of them think past the skin. I’d be concerned too, as our bodies are so sensitive to air-borne toxins. I’d encourage you to keep digging, and do thorough research into the fabrication of the masks, down to contacting the producers. Maybe you’ll be the one to spearhead a change in the industry!

  • Debra says

    I really appreciate this article. Although I’ve improved a lot on AIP, I have reached a plateau in my healing, and haven’t been able to make any more progress. I just looked into the one remaining medication I’m taking (levothyroxine), and I’ve discovered that it includes lactose, corn starch, sodium starch glycolate (from potato), and acacia (tree legume). Yikes! Now my problem is trying to get a prescription free of these issues. My endocrinologist is extremely conventional, and only prescribes generic T4 meds. I doubt he’ll cooperate about this.

    • Mickey Trescott says

      Debra,
      Have you asked your doc to write a prescription for compounded levothyroxine? This is what I take, and I get the choice of filler to avoid all the nasties. I would suggest coming to him with a list of symptoms when you eat lactose, corn, etc. and see if you can make a case for it–compounding is not as uncommon as these docs lead us to believe!

      Mickey

    • Susan Vennerholm says

      I was suspicious of reactions to fillers in my meds, and I asked a local compounding pharmacy to use ginger as a base. They got it in, and it’s been doing really well for me. If you have trouble getting compounded meds lined up with your doc, you can go about it via the back door, by calling local compounding pharmacies and asking which doctors prescribe thyroid meds with no icky fillers. Then you can see about going to one of those doctors instead if you like. Good luck. I’m glad you sleuthed out the fillers that may be causing you trouble!

  • Hedy says

    Do you have any recommendations for curcumin/meriva that’s AIP legal? I’ve been searching high and low. Thanks.

    • Susan Vennerholm says

      Hedy – Sorry, but that’s not one I’m familiar with.

  • mvarrin says

    This article is so needed. Just when we think it’s all been covered. 🙂 A couple of weeks ago, in a very weak and sleep starved moment, I took my friend’s sleeping cocktail of 3 mg. melatonin and a 1/4 of a dyphenhydramine (benadryl) sleep tab. Woke up a few hours later in uncontrollable shakes and had a full blown panic attack. It was very scary. All of that to say, my ND thinks it was caused by the fillers in both drugs.

    • Susan Vennerholm says

      Mvarrin – So sorry to hear you had that experience! I’m a dedicated label-reader – too many surprises out there! Just this week I found out Advil has corn starch (Ibuprofen is not AIP-compliant, but I carry it anyhow in my backpack in case someone twists an ankle!). I’m glad your N.D. was online with the filler opinion.

      • Atlanta Girl says

        You might consider White Willow Bark instead – I do a lot of backpacking and although I carry Advil for others, I use WWB and Arnica for myself – I have gotten into making my own tinctures and oils.

  • […] I’ve been guest-blogging over at Autoimmune Paleo. In February, I wrote an article about hidden gluten, grains and nightshades in medications and supplements. For many people on the AIP or other modified diets, getting the […]

    • Maryanne says

      Thank you for this informational post on hidden allergen/ immune Tigers lurking in medication. I’m currently looking for a pharmacy near SLC, UT. or one out of state that will ship to Utah. I have lupus and Hashi’s and have looked into locally offered fillers. Sadly, the only options I’ve been given are acidophilus, rice powder, or l-leucine as a NDT thyroid filler in my compound meds. I’m open to suggestions on how I can troubleshoot and what to use. Thanks for the feedback.

      • Susan Vennerholm says

        Hi Maryanne! I went to a local compounding pharmacy and spoke directly with the pharmacist. I asked him if he’d be willing to order in powdered ginger as a filler, and he was happy to do so. Ginger is AIP-compliant and has anti-inflammatory qualities. It’s been working fine for me. Perhaps you could try doing the same thing? I’d suggest getting face to face with the pharmacist – or you’ll likely get the canned answer of “these are your options”. If that doesn’t work, I’d suggest getting your Google-fu hat on, and start searching compounding pharmacies and ginger filler – and here’s a link that may help lead you in the right direction: https://thecompounder.wordpress.com/2010/02/04/thyroid-madness-apparently-so/

        Please keep us posted – I”m sure there are others in the same fix who’d like to know what you get worked out.

        • Maryanne says

          Susan,
          Thank you for your gracious reply and helpful advice. This is uncharted territory for me, so your guidance is SO appreciated. So far I’m not having much luck with finding another filler alternative beyond the rice and leucine option, although I’m still on the hunt. I have spoken to one pharmacist that stated he would be willing to try a few different options for my thyroid meds in order to see how I react- which is a promising start. Although, lupus meds have proven a little more difficult, since most don’t have the option to compound yet. I will follow-up with you as I embark on this journey, so that it may be of help to someone else that’s in the same boat. Thank you for all of your help! I’ll keep you posted!

          • Susan Vennerholm says

            Maryanne – I’d love it if you kept me posted, thanks!

  • […] Everyone on the Autoimmune Protocol knows to avoid dietary gluten. Hopefully you also know to check supplements and medications for hidden gluten and other ingredients that might cause trouble. For an AIP newbie, changing your […]

  • […] of the Autoimmune Protocol. Most of the time, they aren’t necessary, and because of all of the filler and ingredient possibilities, they can actually be a problem for a lot of people (check out this article and this article for […]

  • Veronika says

    And what about organic molasses and organic cane sugar + alcohol? I use daily vitamin b12 supplement with all these ingredients.

  • Atlanta Girl says

    I would encourage everyone to shop around for a trusted Pharmacist before you have a crisis – I (thankfully) don’t take any meds right now but I had a question about a particular supplement. My (former) MD was completely useless. I went around to a couple of different pharmacies at non-peak times to ask about it. Found one who knows a lot about alternative/natural/holistic options. He offered a lot of feedback and suggestions – even asked about what other supplements I was taking. I had a list, but he said bring all the containers (at a slow time). He went thru all of them, suggested best time of day and combos for taking them, as well as dosage changes.

    What pharmacists can say may vary from state and what the company’s policies may be – but definitely worth sourcing one out before you have an urgent crisis.

  • Kristi says

    I am a Dieititian and work for a very reputable dietary supplement company. All wheat sources HAVE to be listed on the label as a major allergen. Corn is not a major allergen, so while maltodextrin is derived from corn, doesn’t mean everyone reacts to it. same with Vitamin C, it’s simply just the ascorbic acid derived from corn, it’s not a grain and people don’t react. Same principle with Vitamin E. Choose a GMP certified supplement company that lists major allergens on the label including wheat,gluten,soy.

  • […] Read labels carefully so you know what’s in the bottles and look for an allergen statement. Many supplements contain things like corn, soy, dairy, nightshades, gluten and other grains. […]

  • Michele Bush says

    Some meds contain dairy also and I have to watch out for that. Some steroids (specifically Medrol dose pack) contain lactose binders. I found out about this about 1.5 years ago when I had to take this and by day 4 I was coughing and getting a tight chest.

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