Dave Hellerud, who delivers the Post Bulletin in Rochester, is supposed to be on five medications, most of them prescription. But he hasn’t taken any of them for months, if not years, he says, because of severe allergic reactions.
Hellerud has celiac sprue, a chronic genetic disease that renders him gluten-intolerant. When he consumes gluten, his immune system responds by damaging his digestive tract.
Hellerud also had an aortic aneurysm years ago. He’ll need open-heart surgery in three to five years, his family estimates. The drugs Mayo Clinic prescribes to him are vital for his health and well-being. He just can’t take them.
Allergic to meds
Celiac disease interferes with the digestion and absorption of nutrients from food and, as it turns out, medication, Sara Hellerud said. So even if Dave was willing to suffer through abdominal pain, cramping, and digestive distress, he still wouldn’t be able to properly absorb the tainted medication.
Hellerud was previously treated by Dr. Fateh Bazerbachi, a gastroenterologist at Mayo Clinic.
“As we learn more about gluten sensitivity in general and celiac disease in particular … we are getting more awareness of different patients who may have different levels of sensitivity to the agent,” Bazerbachi said. “In this case, gluten.”
Hellerud’s medications are mostly to treat his heart problems: Losartan, a cholesterol statin; Hyoscyamine, a sublingual for abdominal cramps; baby aspirin; fish oil; and a prescription antacid.
Finding a cholesterol statin that was completely gluten-free was Bazerbachi’s priority during his time treating Hellerud, the doctor said.
But nowadays, the only medication Hellerud said he can take is individually-packaged Chantix, a smoking cessation aid. The rest of them are not safe for him.
How hard is it to get gluten-free meds?
There’s no requirement for medicines (including prescription drugs, over-the-counter options, or supplements) to be labeled gluten-free, Mayo Clinic pharmacist Jordan Haag said. There are lists online of drugs that contain gluten, but those may be out-of-date or incomplete.
“The best source of information is to discuss with your pharmacist or directly contact the manufacturer of the medicine,” he said. “Although every pharmacist may have a differing level of formal training or expertise on this topic, all pharmacists should have access to resource materials to help answer these questions.”
There are plenty of warnings online against gluten-containing ingredients used to bind the medication together.
• Modified starch (if source is not specified)
• Pregelatinized starch (if source is not specified)
• Pregelatinized modified starch (if source is not specified)
• Dextrates (if source is not specified)
• Dextrin (if source is not specified; the source is usually corn or potato which is acceptable)
• Dextrimaltose (when barley malt is used)
• Caramel coloring (when barley malt is used)
“For some indications, we have many medicines to choose from and are often able to find one that is considered gluten-free,” Haag said. “Unfortunately for other indications medication options may be limited, and obtaining gluten-free may not be possible.”
It rubs off
Unfortunately, Hellerud isn’t always reacting to ingredients in the medications themselves — that problem can be solved by reading ingredient labels carefully and doing diligent research.
The problem is that some gluten-free medications are made or sorted in the same facilities as medication that do have gluten. Hellerud’s body reacts to those medicines, too.
“The struggle we’ve been having is being able to determine, from the manufacturer, whether the devices that manufacture these medications are completely free, no contact with any gluten-containing material,” Bazerbachi said.
“It’s different, me telling you that I don’t know that my device has had contact with gluten, and me telling you I can guarantee that my device has not had contact with gluten,” he added. “Absence of knowledge should not be construed as knowledge of absence.”
When a bottle of pills is sorted and counted out on a tray, does the drug manufacturer ensure that between every batch, someone cleans the surface thoroughly every time?
Hellerud says no, based on his inability to purchase medications that don’t trigger reactions.
“By the time a drug gets through all those hands and into the bottle, it’s been cross-contaminated,” he said.
And unfortunately, Hellerud has reacted poorly to medications he’s purchased from every pharmacy in Rochester.
The advice he’s received has been to call the medical suppliers directly to see whether they can tell him that certain medications haven’t had contact with gluten in any way, but he has never been able to guarantee that a given batch is safe, when he could tell for certain where a given bottle came from. A single pill could also contain ingredients from “10 different labs,” he said, complicating the issue.
“I don’t know until I find out the hard way,” he said.
The ‘niceties of life’
“Although gluten is not absorbed through the skin, certain cosmetic products or health and beauty aids that may be accidentally ingested should be reviewed,” Haag said. “Products like toothpaste, lipstick, or lip balm could certainly be ingested. Other products such as hand creams, soaps, and lotions may accidentally contaminate food during preparation or eating. Be sure to have children wash their hands after playing with products such as various types of modeling clay, as some of these products are made with wheat flour.”
Hellerud is sensitive enough to gluten that he reacts when his skin touches ink or soap that contain the substance. He has to buy specific gluten-free coffee filters and toiletries to get through his day without a flareup.
“And those are the niceties of life,” Sara Hellerud. “This is the medication we need to sustain him.”
And while he may represent a small portion of the celiac community, as far as sensitivity, Hellerud wants to see a solution soon.
His son has the celiac gene, and even if the Hellerud family doesn’t see another case of the disease, someone else is sure to have the same problems he has procuring essential medications.
“I’m not going to be the first or last,” he said.
Recently, the Helleruds have turned their thoughts to the prospect of Dave’s open-heart surgery. The tools, gloves, anesthetics, drugs, and everything else involved will have to be gluten-free, Sara Hellerud said — not only that, but completely clear of any contact with gluten.
In April of 2019, Reps. Tim Ryan (D-Ohio) and Tom Cole (R-Oklahoma) introduced H.R. 2074, the Gluten in Medicine Disclosure Act of 2019 to the House. It’s been referred to the House Committee on Energy and Commerce, but hasn’t progressed further this year.
The bill would require drug manufacturers to label medications with the list of ingredients, their source, and whether gluten is present. It’s not a perfect solution to Hellerud’s problem, but it does represent a step forward for people who have trouble merely determining whether an over-the-counter pain-killer is gluten-free.
The Helleruds are not lobbyists or activists, but they’ll be watching that bit of legislation’s progress.
They’re proponents of supporting certified gluten-free grocery products, and think labeling is hugely important.
However, they have another idea as well.
“We’ve got gluten-free kitchens, let’s get a gluten-free pharmacy,” Hellerud said. “It’s so crazy that you can get certified gluten-free beer, but not gluten-free medication,” he added.