MEDICAL AND HEALTH

HEALTHCARE PRACTITIONERS WHO SPECIALIZE IN CELIAC DISEASE

The two healthcare practitioners primarily involved with celiac disease and gluten intolerance are gastroenterologists and registered dietitians.

Gastroenterologist (And How To Find One)

A gastroenterologist (gastro-enter-ologist) is a medical practitioner who specializes in the diagnosis and treatment of disorders of the stomach and intestines.   

  • To find a gastroenterologist who specializes in Celiac Disease, see National   Celiac.org. Another possibility to check is ZocDoc.com.

  • For information about the practical aspects of working with a doctor, including when to take someone with you to act as an advocate, why and how to record important conversations, switching doctors if you are not happy with a doctor, and for help paying for services, click here.

 Registered Dietitians

A gluten-free diet generally needs input from a registered dietitian to be nutritious. 

A registered dietitian is a food and nutrition expert who completed college, specialized training and education – and must complete continuing professional requirements to maintain registration.

A registered dietitian can be helpful in a number of areas. For instance:

  • Assessing your current food and nutrition intake

  • Help create a balanced nutrient intake of important vitamins, minerals and fibers

  • Help with your knowledge, beliefs or attitudes about a gluten-free diet

  • Help with information to work with your religious beliefs

  • Discuss availability and cost of gluten-free foods.

 Before you go to a dietitian:

  • Start keeping a food journal. A food journal will help facilitate the discussion with the dietitian. It will also leave valuable time to discuss your future (versus the past.) The journal should include:

    • What you eat and drink for five to seven days.

    • Note any symptoms and when they start. Keep in mind that if you are glutened, there may be a delay of several days or more before symptoms appear, if at all.

    • If it would help, free journal apps are available on such sites as LoseIt or MyFitnessPal.

  • Take with you a list of your medications – both those which you take currently and those you stopped taking within the last year.

  • Think about the questions you want to ask and write them down. To see questions others have asked, and their answers, visit the National Celiac Association.

  • When you make the appointment, plan on taking notes. It may be helpful to ask if it is okay if you record the conversation so you can review what was said at a later time. If the meeting is important, consider taking a friend with you to help remember what was said – and to ask the questions you may forget to bring up.

To help find a gastroenterologist or registered dietitian with expertise in celiac disease

How To Work With A Physician

The likelihood is that you have been exposed to doctors since the earliest days that you can remember. Given the importance of medical care, it is time to learn the simple steps needed to maximize your relationship. To learn how to effectively work with a doctor, click here.   

When And How To Get A Second Opinion 

Basically, ask for a second opinion from another doctor whenever you feel like you need one. While you may be limited to seeing doctors in the company’s network, second and even third opinions are generally covered by health insurance. (To learn about second opinions, click here. If you don’t have health insurance, to find out how to get it, click here.)   

At the least, ask for a second opinion if:

  • A doctor tells you that you can be gluten-free before taking a blood test or undergoing an endoscopy

  • A doctor tells you, without testing, to stop eating gluten and see what happens.

  • When a doctor says you can resume eating gluten again once your blood levels are normal.

  • The doctor refuses to test family members unless they are experiencing stomach aches.

With celiac disease and gluten intolerance, the second opinion should come from a gastroenterologist who specializes in celiac disease.

To learn how to find a gastroenterologist who specializes in celiac disease, click here. 

How To Switch Doctors  

There are times when it is advisable to switch to a different doctor. For instance, if you believe the doctor is not as qualified as you need, or you have difficulty conversing. It is your right to change doctors. 

To learn how to switch doctors, click here.     

Medicines, Vitamins Supplements And Dental

A small number of medications, vitamins, minerals and supplements contain gluten as a binder to hold together active ingredients. Such binders are referred to as “excipients.” To learn which excipients contain gluten, see GlutenFreeDrugs.com or email GlutenFreeDrugs@gmail.com . The following describes various situations and what to do about them - as well as tips for paying for medications. Note that if a gluten-free medication is not available, a gluten-free version can be compounded.

Prescription and Over-The-Counter Medicines

It may be difficult to check your current or new medications, vitamins and supplement for gluten.

  • Neither prescription nor over-the-counter medications are included in the FDA gluten-free labeling regulations. 

  • Experience indicates that most health care providers, pharmacists, and registered dietitians do not know which medications, vitamins and supplements contain gluten. 

  • There is no requirement for a manufacturer to alert consumers or the medical community when a binder ingredient is changed. 

Whether you are receiving a new prescription, starting an over-the-counter medication, or renewing either, consider the following steps:

  • If a medication is prescribed: ask your health care provider if the medicine is gluten-free. In addition to active ingredients, ask about inactive ingredients that help bind medications.

  • Ask your pharmacist whether the medicine is gluten-free. If your pharmacist doesn’t know, consider asking that the pharmacist look at the Gluten Intolerance Group’s process for pharmacists to verify gluten-free status of medications.

  • If you still don’t have the answer, read the package insert. 

  • Check to see if the drug is listed as gluten-free on the website: glutenfreedrugs.com. The site is authored and maintained by a clinical pharmacist. 

  • As a last resort, check the manufacturer’s website or call the manufacturer. Contact information is usually on the company’s website. If it isn’t, search for the phone number through your favorite search engine.

  • For renewals of prescriptions that have been checked, periodically check with the manufacturer to be sure there has not been a change in ingredients.

  • Be aware that it can be difficult to check with a manufacturer – it may even take weeks to get the answer. If the drug is a must-have-now, check with your physician or contact your local hospital. 

NOTES: 

  • If the medication relates to a life-threatening condition, weighing risk and reward, take the medication. You can recover from being glutened. (To learn gluten recovery ideas, click here.)

  • If a refill is from a different manufacturer: Verify with your pharmacist that the new version is gluten-free, including inactive ingredients (technically referred to as excipients.)

  • If you have glutening-like side effects from a medication, report your condition and the side effect to the manufacturer and to GlutenFreeDrugs@gmail.com.

Compounding

If there are no gluten-free options, consider compounding your medication. Compounding is the creation of a medication by a licensed pharmacist to meet the unique needs of an individual patient when a commercially available drug does not meet those needs.  Compounded prescriptions are frequently covered by health insurance. To learn about compounding, click here.

If your insurance company covers prescription medications but declines to cover a compounded medication, consider appealing. For information about appealing, click here.

At least one compounder that we know of compounds gluten-free drugs: Stokes Pharmacy. If you learn of additional gluten-free compounders, please let us know at info@charliesoasis.org

TIPS

  • Every time you have a prescription filled or renewed, remind your pharmacist about your health situation and any specific brand medication you need.  With a refill, the pharmacist may want to use another manufacturer, or your current manufacturer may have changed inactive ingredients.

  • When getting a prescription from a physician:

    • If it is clear the prescribed drug is gluten-free but a generic version may not be, ask the doctor to add to the prescription, words such as: “dispense as written.”

    • In case your insurance company doesn’t cover the drug, or has a high co-pay, ask your doctor for a back-up prescription for another brand if needed.

    • Also ask your doctor how to get in contact with him or her if you encounter a problem filling the prescription. 

  • It is advisable to ask about a second choice medication if it turns out that the originally prescribed mediation now has gluten in it.

Vitamins and Supplements

In addition to medicines, the federal food labeling laws concerning the disclosure of gluten apply to vitamins and supplements.  

Check the label to be sure they are gluten-free. For example, that there is no wheat, starch or modified food starch. Gluten may be used as a binder or filler in supplements. Even a small amount of gluten can be harmful. If you still have questions, check the manufacturer’s website or contact the manufacturer.

Periodically check with the manufacturer to be sure there have been no changes. Set a rolling date on your calendar or in your mobile phone.

TIPS

  • Eat a well balanced, healthy diet. Pills should not replace food.

  • Keep in mind that wheat-free does not always mean gluten-free.

  • There are currently no over-the-counter enzyme supplements that digest gluten. It is also not clear if they are safe.

Paying For Medications

Health insurance, Medicare, Medicaid and Health Savings Accounts all pay for medications. 

If you do not have health coverage, or cannot afford health coverage, check the requirements for Medicaid in your state. Type into your favorite search engine: Requirements to qualify for Medicaid in (insert name of the state in which you reside.)

There is information about all these subjects in Survivorship A to Z. While the site is for people with a life-challenging condition, the information applies to people with celiac disease or gluten intolerance as well. See: SurvivorshipAtoZ.org.

Dental

Dental products, including both professional and home products, may contain gluten. For instance, a chemical resin found in a variety of dental products such as orthodonic retainers, fixed and removable dentures, temporary crowns and denture repair materials may include a chemical resin methyl methacrylate (MMA) which contains gluten.

Under current law, manufacturers do not have to disclose gluten in dental products.

For personal dental products:

Look for gluten-free on labels – including toothpastes and teeth whiteners. If not there, contact the manufacturer or ask your dentist.

For professional dental products:

Celiac.com has a list of professional dental products that are gluten free: www.celiac.com/articles.html/what-brands-of-professional-dental-care-products-are-gluten-free-r5822/.

A Celiac Friendly Pharmacist

If you take prescription or over-the-counter medications, a pharmacist who understands the needs of a person with celiac disease and who is proactive will make your life much easier. You need to be sure the medication is gluten-free --- something that is frequently not easy to do.

Pharmacists educated about gluten are not easy to find.  

When you start your search, ask your physician, dietitian or local gluten sensitive Meetup group if there are any pharmacists who specialize in knowing about gluten-free medications.

When looking for a pharmacy, ask if it has a program to flag allergens in medications – or at least makes a note in your file about allergens that will automatically be flagged when a prescription is submitted. Such a pharmacy will know to check for gluten in every medication you are prescribed. Such a pharmacy and pharmacist will also be on the alert for changes in a particular medication. 

If you can’t find such a celiac friendly pharmacist locally, consider using an online pharmacy that will track allergens for you.


How To Choose A Hospital

If you have a choice of hospitals, read about How To Choose A Hospital.

In addition, check with a local celiac Meetup or support group to learn about which local hospitals are better than others at caring for people who have to eat gluten-free.  

Before Entering A Hospital

If you are going to a hospital on a non-emergency basis, call ahead and speak with the nutritionist. Let the person know about your medical condition and the need for a gluten-free diet. Find out what arrangements can be made. 

If it seems that the hospital is not familiar with taking care of people with your concerns, speak with your physician. Perhaps he or she can make a suggestion. 

Check the gluten-free offerings of restaurants near the hospital. If the hospital food is lacking or is unsafe, patients are usually allowed to order from an outside restaurant. If not, a friend or family member could pick up the food for you.

If someone will be coming to visit, let them know you may need help getting safe food.

In a bag to take to the hospital: 

  • Pack a variety of gluten-free snacks you love “just in case.”

  • Consider including a reminder sign that can be taped to the wall above your bed with words such as “Gluten-Free Only”

Learn how to stay safe in a hospital. Lately, we have been associating those two words with COVID, but in a hospital setting, they also apply to infections.

Click on the following links for tips about:

In The Hospital

When you enter a hospital, be sure to disclose to the people in the admitting office that you have a medical condition and have to avoid gluten in food, drink and medicines. Ask that a note be made in your file and that all the medical staff be made as aware of your need as the food staff.

Once you get to your room, make sure that it is noted in your record, and repeat it to every nurse and hospital worker that enters your space that you have a health condition and must stay strictly gluten free – and that applies to medicine as well as to food and drink.

When a nurse or doctor is about to give you medication, ask whether it is gluten-free. If the person doesn’t know, ask that the manufacturer be contacted. If medical personnel don’t have the time, perhaps one of your friends or family members can step in and help.

To help improve the odds of being gluten-free, once you have a bed, consider putting a reminder note on the wall above your bed to the effect: GLUTEN-FREE ONLY. The sign can be particularly useful if an emergency occurs and personnel forget about your gluten restrictions. 

“Just in case:” keep gluten-free snacks on hand.

Most hospitals allow nearby restaurants to deliver to patients. If there are none that are gluten-free and fit your budget, ask one of your visitors to bring you gluten-free food – and be specific about what you want. Unless the person lives in your home, the odds are friends or family members will not be able to make something at home. If the person needs to stop at a grocery store, be specific about products and brands you want. It is not likely that the person knows how to read labels the way you do.

For information about maximizing your time in a hospital and negotiating a hospital bill, see:

TIPS

  • Do not rely on the sign above your bed to do your talking. If you are not up to it, ask a family member or friend to do it for you.

  • Having an advocate with you in the hospital to help you stay safe from things like infection (as well as gluten), is always a good idea.

  • To learn more about staying safe in a hospital, click here.

Mental Health

Attitude

A positive, can do, attitude is critical to living gluten-free 24/7. The importance of the right attitude cannot be stressed often enough.

When negative thoughts come in, recognize your thinking as a thought and change your focus to something else – preferably something positive. For instance: Isn’t it wonderful you live in a time when so many food options are available? A worthwhile book that can help change your thoughts is: Think About Your Thinking: Discover How Your Thoughts Can Control You and You Can Control Your Thoughts by Kathleen Strickland (available at Amazon.com).  

 

Anxiety is not uncommon when adjusting to a gluten-free lifestyle. Consider using anxiety as a trigger to come up with a plan. Hopefully the information in this guide will help you create one. If anxiety persists, check our article about easy ways that have helped other people cope with anxiety.  

Food bullying is not uncommon in our society. There is no reason to be ashamed about your health condition or why you eat gluten-free.  

Two techniques that have helped other people overcome a moment of weakness are:

  • Think of how many such challenges you have already survived. Visualize those moments as achievements that you do not want to cheapen by cheating – even just once.

  • Visualize how sick you could become if you cheat – and for how long.

  • Your time without gluten and your commitment to health should actually be something to be proud of. 

  • Get what you need. Speak up for yourself

  • Be patient and kind with yourself. 

  • Don’t beat yourself up for not healing fast enough or for not doing well enough or even not handling the situation.

  • Keep in mind that you are not alone

  • It is okay to let people know when you are having a bad day.

  • To paraphrase Jennifer Esposito in her book Jennifer’s Way: Live in the moment, not of what you believe the moment should be but of what it actually is. Be who you are. Let yourself feel what you feel. Find your way.

Guilt

If you have celiac disease, and one or more of your children also has celiac disease – and you have guilt about it – keep in mind that your genes may be the cause, but it is not your fault.

You did a wonderful thing bringing this human being or beings into existence. 

There are so many things to be grateful for.

With the use of a diagnosis as a wake-up call to live a healthy lifestyle, you’ve actually given your child a gift. Sure, eating gluten-free 24/7 isn’t  easy, but neither is living a totally healthy lifestyle.  Your child has the incentive – and will hopefully use it. 

To help yourself, reach out to other parents in your situation. An easy way is through Charlie’s Oasis. Consider joining a support group. In a support group, you’ll not only get a place to share your feelings and get support. Support groups are a great source of practical information.

To learn how to help your child through various stages, see:

Support  

When starting, or having difficulty sticking to, a gluten-free diet, the face-to-face support of other people who understand what you are going through helps tremendously. There is nothing quite like speaking with another person who has the same medical condition as you and is working through the same things.

Support groups provide emotional support by interacting with people in a similar situation. In addition, support groups can be an amazing source of practical information and advice. Support groups are not about dating or socialization (although who knows what can happen?)

One way to get support is to reach out one-on-one to people in a similar situation. One way to do that is through Charlie’s Table Oasis. Another is to contact your local Meetup group. If you don’t find the person or people you are looking for, expand your search to Meetup groups around the country.

Support groups can also be a great way to meet new friends who are going through the same thing you are.  

Even if you are not a joiner, we still suggest that you consider joining a support group. If one support group isn’t right for you, consider trying at least one other or starting a group of your own.  

Support groups are available in person and online. Studies show that people get just as much out of an online support group as they do an in-person group.

Some groups say they are for people with celiac disease only. If you have gluten intolerance, the issues you are dealing with are the same. If asked, or if you feel it is necessary, disclose your condition. A support group should be considered to be a safe environment where you only speak the truth. 

Consider including a significant other or family member in a group meeting so they can get a better understanding of your reality. Also be aware that there are also support groups for family members/significant others available in person and online. 

 

To learn about support groups, including what they are, why they are useful, questions to ask before joining, whether a particular group is right for you, whether to consider one that meets online or in person, and how to locate one: see our article Support Groups 101.

To locate a support group that works for you, see: 

TIPS

  • Unless a member of the group is an expert, always do your own research and double check any information you learn from a support group - or from any nonprofessional source. There is a lot of misinformation. Plus, information may have been correct, but manufacturers and restaurants can change policies at any time – frequently without notifying customers. 

  • If a loose structure doesn’t work for you, look for a group that is led by a psychiatrist, psychologist or social worker.  

Before Getting Pregnant

Women with celiac disease: It is not uncommon for women with celiac disease to experience fertility issues. Before you set your hopes on getting pregnant, consider checking with your physician for his or her opinion.

Adopting a gluten-free diet after a diagnosis of celiac disease brings fertility rates back to the same as the reset of the population.

Even if you have been following a gluten-free diet 100% of the time, Dr. Alessio Fasano recommends that you get tested for nutrient levels and the presence of anti-TG antibodies.  Once the lab tests show good nutritional status and the lack of these antibodies you are ready to plan for conception.

Women with gluten-intolerance: There is no evidence that gluten exposure during pregnancy has any harmful consequences other than the reappearance of symptoms.

Men: Undiagnosed celiac disease may cause lower sperm counts, abnormal sperm shape and lower hormone levels, all of which can impact fertility. Nutritional deficiencies can also make it harder for the body to create sperm.

During The First Trimester

  • Seek the care of both a gastroenterologist and a registered dietitian.

  • Eating small but frequent snacks is an easier way to tolerate food.

  • Don’t let cravings interfere with your need to eat gluten-free.

  • Keep a variety of gluten-free snacks, such as cereal bars, close by all the time. For ideas, click here.

During The Second Trimester

  • Eat an extra 500 calories a day.

  • Pay even more attention to eating healthy.

  • Since you may have more energy now than during the third trimester, consider preparing foods you like and freezing the food for when you come home with the baby.  Also consider creating meal plans/needs that can be given to your significant other or friends and family.

During The Third Trimester

  • During a prenatal visit to the hospital in which you will give birth, speak with the staff dietitian, the nurses and everyone else who will be attending to you when you deliver your baby. Be sure they understand and can accommodate your need to avoid gluten – in the food you eat, what you drink and in any and all medications.

  • In the pre-packed bag you will be taking to the hospital:

  • Pack a variety of snacks you love “just in case.” For ideas about snacks to keep on hand, click here.

  • Consider including a reminder sign that can be taped to the wall above your bed with words such as “Gluten-Free Only” or check the gluten-free offerings of restaurants near the hospital. If the hospital food is lacking or unsafe, you are usually allowed to order from an outside restaurant. If not, a friend or family member could pick up  food for you.

For additional information about pregnancy and celiac disease see  pregnancy information from the Gluten Intolerance Group. 

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