celiac – in thriver words

Holiday Cheating

Specialized diets are especially prone to holiday cheating. Sometimes that’s because it’s hard to resist the family favorites. But too often, it’s because a restricted person doesn’t have needed support.

Prior to 2020, I viewed this as a problem. I even recognized it was significant, but I failed to understand the depth of the issue. Watching people fail to protect themselves during a pandemic in order to fit in has been an eye-opener.

It’s so easy to brush off someone else’s dietary concerns as imagined or unimportant. It’s tempting to think that just a little bite of a food they cannot eat won’t hurt them. And it requires effort to become informed, provide alternatives, and be thoughtfully inclusive. Better to just make light of their concerns and move on, right?

If you asked that of a Thanksgiving gathering as a direct question, I don’t think anyone would answer, yes. Unfortunately, when the question is unspoken, behavior toward the restricted often indicates a yes. Teasing, pressuring, making rude comments, whispering, eye-rolling or huffing when someone doesn’t take a dish are not supportive behaviors.

I understand that it’s hard to take some people seriously. My mom used to refuse chili at lunch because she was “allergic” to tomatoes and eat pizza with red sauce for dinner. Who can possibly understand that logic? And with some food intolerances, maybe you can have a little without significant damage.

This is not true for people with celiac disease. Even though they won’t die of anaphylactic shock at the table, even a little gluten can cause long-term damage. It is not reasonable to ask someone with celiac disease to just take a little bite simply because the effects are not immediately visible.

It’s also not true for people who are following certain regimens because of drug interactions, chemo, or the possibility of anaphylaxis. Everyone is entitled to privacy regarding their health. A long explanation shouldn’t be required in order for a request to be taken seriously.

Obviously, the primary burden of communicating and adhering to dietary limits falls with the person who has restrictions. It is incumbent on them to communicate clearly and consistently. Without extra effort as host, you can help them not be tempted to cheat this Thanksgiving by:

Welcoming them warmly without judgement. Assume that you don’t know the whole story.

Not treating their restrictions as a burden. Don’t worry about providing alternative food. Answer questions about ingredients graciously or save labels for them to read. Accept that their plate may be sparsely filled.

Helping redirect the conversation. Interject with a quick apology and change of subject when someone else at the table becomes pushy or inquisitive in an unfriendly fashion.

Being willing to learn more. If someone with restrictions is helping you in the kitchen, casually inquire what you would need to do differently for a dish you’re preparing to work for them. The answer could be change the whole thing, but it might be that a simple adjustment would make that dish appropriate for them next year.

Treat them as equal. Just because someone has to eat differently doesn’t mean they are less important, less deserving, or less polite. Support begins with simple gestures like these.

As your knowledge grows, you may want to provide additional layers of care. Or you don’t have to. Most of us are grateful for any level of support that makes it easier to avoid holiday cheating!

Dairy-Free Thanksgiving

Progress in Reverse

Reverse vaccines are also called inverse or tolerogenic vaccines because, if successful, they will help your system tolerate things that now trigger an adverse autoimmune response. For someone with celiac disease, that could mean being able to tolerate wheat, rye, barley, and malt. This would be a great relief for many people, but it won’t happen tomorrow. Research takes time.

A new Phase 1 Trial is being held to determine whether progress in reverse will be progress forward when it comes to therapy for celiac disease. That may sound backward. And it is. Reverse in this case refers to a vaccine that will work to suppress an immune response rather than rev it up.

The tolerogenic concept has been pursued for at least 15 years. Current treatments for the 80 known autoimmune diseases that affect more than 5% of the population involve blocking the immune system with drugs. This is problematic because the drugs often lack specificity and leave patients at risk for side effects, opportunistic infections, and malignancies. Another downside is that the drugs must be taken for the rest of your life and they are not preventative or curative.

In the hope of finding better options, tolerogenic mRNA vaccines for multiple sclerosis and rheumatoid arthritis have been explored in trials using mouse models. There has been progress and the approach has experienced limitations. The search for the best approach continues.

This new celiac disease trial attempts to move the needle forward by bringing another model into play. It pulls from previous work by Hubbell and colleagues’ research that included synthetically glycosylated antigens used in an attempt to prevent Type 1 diabetes (I’m greatly simplifying here). In that research, they worked from an idea that had been previously written about – using the liver’s tolerogenic environment as a school in which resident antigen-presenting cells train circuiting immune cells to tolerate specific antigens and create TReg memory.

They explain how this works as: “The liver naturally marks molecules from broken-down cells with ‘do not attack’ flags to prevent autoimmune reaction to cells that die by natural processes. [The glycosylation] coupled an antigen with a molecule resembling a fragment of an aged cell that the liver would recognize as friend, rather than foe.” In an MS model, they were able to demonstrate this works as an effective treatment – glycosylated myelin proteins stopped neural damage and reversed symptoms. This is the approach they’ll use in the celiac Phase 1 trial.

The trial is small – just 41 patients. But that’s common these days. I’ve reviewed grants for multiple studies that proposed a small number of participants. Many of those received funding. Some of them go on to become therapies. Many do not.

It’s too early to tell whether this research will result in a successful inverse or reverse vaccine, but all research moves us forward. There is much knowledge to be gained, even from studies that fail.

If you’re interested in participating in clinical trials, you can use tools like ResearchMatch to find an appropriate match or ask your doctor or pharmacist. Not all trials involve drug research. Some focus on MRIs or a specific type of diet or workout. Others look at interventions like watching videos. Some studies pay. Others do not.

Progress in reverse can be progress forward and we can all participate in efforts to increase knowledge.

Celiac’s Relationship to Risk for Other Diseases

If you have Celiac Disease, it’s important to recognize Celiac’s relationship to risk for other diseases. It’s especially tempting at this time of year to ignore the signs of distress your body sends you when you eat bread stuffing, gravy on your turkey, flaky pie crust, gingerbread cookies, and Christmas cookies – after all, it’s the holidays! Before you grab another roll in spite of your physician’s advice to follow a gluten-free diet, it’s good to be informed about the other health effects this could have.
crust
Here is a list of health conditions related to Celiac Disease:

Cancers
Non-Hodgkin Lymphoma and Small Bowel Cancer are serious complications of Celiac Disease. The good news is that three to five years of adherence to a gluten-free diet reduces the risk of these cancers to the same risk found in the general population. The risk will remain the same as it is for the general population so long as the gluten-free diet continues.

In untreated Celiac Disease patients, Esophageal Cancer occurs at a rate as much as 8 times higher than in the general population. A gluten-free diet reduces this risk.

Those with Celiac Disease have a threefold higher risk of Papillary Thyroid Cancer. This is the most common type of thyroid cancer and is highly treatable.

Chronic Pancreatitis
Chronic Pancreatitis is an inflammation of the pancreas that worsens over time. Having Celiac Disease increases your risk of Chronic Pancreatitis threefold.

Scleroderma
Celiac Disease is a known trigger for Scleroderma – an autoimmune condition that causes a hardening and tightening of the skin and connective tissue. It is chronic and without cure.

Chronic Obstructive Pulmonary Disease (COPD)
Chronic Obstructive Pulmonary Disease is the third leading cause of death in the US. A large Swedish study from 1987 – 2008 found that those with both diagnosed and undiagnosed Celiac Disease had a moderately increased risk of COPD.

Osteoporosis
Untreated Celiac Disease can lead to development of osteoporosis also known as brittle bones.

Infertility
Untreated Celiac Disease may be an underlying cause of unexplained infertility.

Type 1 Diabetes
The incidence of Celiac Disease in patients with Type 1 Diabetes is 4 – 6% (possibly as high as 10% according to the Diabetes Council). Untreated Celiac Disease with resulting malabsorption can cause hypoglycemia in these patients. If you have Type 1 Diabetes and Gluten-Sensitive Enteropathy, it will be easier to manage blood sugar levels when you adhere to a gluten-free diet.

In addition to these diseases, any condition that is exacerbated by inflammation can be affected because Celiac Disease is often associated with chronic inflammation. The inflammation from untreated Celiac Disease frequently causes joint pain.

With all the tempting treats of the holidays at hand, you may struggle to make the decision to remain gluten-free. While you are always free to choose that flaky pie crust, it’s only prudent to do so with the knowledge that if you have Celiac Disease, doing so can have a detrimental effect on your health. And now you know!

http://www.lung.org/lung-health-and-diseases/lung-disease-lookup/copd/learn-about-copd/how-serious-is-copd.html?referrer=https://www.google.com/

https://www.thediabetescouncil.com/balancing-diabetes-and-celiac-disease/

http://spectrum.diabetesjournals.org/content/15/3/197

https://celiac.org/celiac-disease/understanding-celiac-disease-2/celiac-disease-and-comorbid-conditions/22514-2/

http://www.cooking2thrive.com/blog/cut-bite-size-pieces/

Navigating Medical Care

maze Navigating medical care can be an exhausting process as any celiac, IBS, Crohn’s, diabetic, or cardiac patient knows. As this year draws to a close, I’m looking forward to the renewal a new year promises.

I spent the past few days with my mom in a rehab facility. She is a dialysis patient and last week had 3 small strokes. On the phone from the ambulance as she was transported to the hospital, she sounded ok, but said her right arm and hand wouldn’t work right. Five days later, she arrived at a facility where she could receive physical therapy multiple times per day. It was Christmas eve.

Of course holiday staffing varies from the norm. On Christmas day, our nurse was in charge of 60 patients. There are 480 minutes in an 8 hour shift. That means, she could spend 8 minutes per patient even if she didn’t take a single break. We used more than 8 minutes of her time when my mom passed out in the wheelchair from low blood pressure. Needless to say, there is no time for the staff to make sure Mom eats or gets enough fluids.

My mom is lucky because at least one of us has been able to be there for a portion of every day. In spite of that, it has been difficult to get enough information together to assess whether a bad day is just a bad day, or the beginning of a downward trend. It’s hard to know whether we need to quit worrying about the food on the cafeteria tray and just get some Power Yogurt down her. We know she’s not getting enough protein to fend off infection for long. Unfortunately, our experience is not unusual.

I learned long ago when I had a rare parasite that caused recurring pneumonia that when you’re weak and in pain, you must have an advocate with you every step of the way or you can quickly be dismissed and become lost in the system. My lawyer boyfriend was with me when I was trying to get a referral to a large diagnostic clinic. He could barely contain his laughter watching me bite my lip when my pulmonologist said, “If you didn’t have an intelligent boyfriend here with you, I’d say this is all in your head.” And he wasn’t the first physician to say that during my two year ordeal.

I was young, healthy, went to the doctor promptly and still almost died with the first pneumonia after having been diagnosed with a bladder infection. I actually had psittacosis from Chlamydia psittaci which had become encapsulated in a recently capped tooth. This experience made me acutely aware that navigating medical care is best played as a team sport.

During that two years, I read all of my medical charts. This was also an eye opening exercise. The history recorded in the charts often wasn’t even remotely related to the history I gave. I realize my symptom group was unusual. Well, actually it wasn’t for someone with psittacosis, but it was unusual enough for one nurse to determine that I was just a bad historian.

At some point, most of us will need the expertise of the medical system. Without it, we do not have the depth of knowledge, necessary labs, sophisticated testing equipment, or access to medication that may be necessary to get us through a crisis and put us on a path to improving health. Is there anything we can do as patients to make sure we have the best chance of getting optimum results from medical care?

While nothing will guarantee a certain health outcome, here are 5 things you can do to facilitate a more positive journey in the healthcare system:

1. Choose a friend or family member you trust to act as your advocate in any major medical event.
The best advocates care about your well-being, can remain calm in a crisis, are good listeners, can process and prioritize information, are unafraid to ask questions, and will tell you the truth in a kind manner.

Be sure to identify your advocate as someone who has your permission to view healthcare information so that your care providers will not worry about a HIPAA violation. http://www.hhs.gov/hipaa/for-individuals/guidance-materials-for-consumers/index.html

journal 2. Keep a daily journal of your condition.
Try to record facts without interpretation. For example, if you feel your energy level has significantly dropped, record how much sleep you get, when you get it, how many fluids you consume and what kind, what you are eating, how much and when, how much exercise you get, what kind, and when you get it, then note how tired you feel on a scale from 1 – 10.

Doing this every day will help you have a realistic picture of what is happening over time. It will also help identify areas in which a change in routine may help improve your symptoms. If you are too weak to do this, your advocate or caregivers can make notations for you and record their observations as well.

3. Be informed. Ask questions. Make decisions.
You are ultimately in charge of your healthcare. If you do not ask questions, you may be passively agreeing to treatment you would never actively choose. It can be helpful to think of yourself as pilot in command.

In an airplane, the pilot in command (PIC) is the person who makes the final decision about what will happen in an airplane. He can accept or refuse instructions from air traffic control and he is in responsible for all operations of the plane until he actively turns over command to another pilot by saying something like, “your plane or your aircraft”, and hearing “my plane” as a response. He then repeats, “your plane”. This is called a Positive Exchange of Controls.

If air traffic control says, “23 Charlie Tango cleared to land 22 left” it does not mean that the PIC must land the plane. He can request a different runway. If he is not cleared for the requested runway, he can initiate a go-around.

You are the pilot in command of your healthcare. You will receive lots of information from instruments and personnel. The more informed you are, the better the quality of questions you can ask and the better resulting decisions you can make. Your doctor is air traffic control. From his vantage point, he can see traffic and the runway better than you can, but he won’t know that you had a fuel leak and do not have enough glide distance to make the runway without input from you. You have the best odds of a safe landing when you work with your doctor as a team to identify alternative landing areas. Once determined, you decide the destination with which you feel most comfortable. You inform the doctor where you prefer to go from here, then you focus on the procedures that will result in your best chance to safely reach the landing area.

Just as it is common to think that air traffic control actually means the tower is in control, many patients do not recognize that they have the choice to request a plan that fits them. More typically, they defer to whatever initial plan the doctor proposes while they’re in her office and then fail to follow that plan once they get home and it doesn’t fit their lifestyle. This can be detrimental to any long-term progress.

4. Treat everyone kindly beginning with yourself.
When you have a chronic condition rather than a medical emergency, it can slowly eat away at your energy and attitude. A desire for relief may lead to impatience with medical staff. While you may feel justified in taking your frustration out on nurses, techs, or aides, doing so will not encourage them to treat you kindly.

The simplest way to prevent reaching the point at which you lash out is to recruit consistent, adequate social, emotional, psychological, and spiritual support. These needs are very individual, so a high level of self-awareness will be helpful in determining what and how much you need.

Incorporating a regular exercise, meditation, or yoga practice can strengthen your connection to internal resources. You may also find restoration in activities like gardening, cooking, writing, reading, fishing, walking, painting, woodworking, swimming, dancing, volunteering, or playing with your children or grandchildren.

flatbread 5. Decrease the need for medical intervention.
You don’t have to worry about navigating the medical system when you’re healthy enough to only require routine check-ups or regular monitoring. In some cases, significant lifestyle changes can minimize the need for medical intervention. The effects of regularly eating a balanced diet of fresh foods, drinking plenty of water, getting adequate sleep and exercise, and filling our lives with passion and laughter should never be underestimated.

The new year is always a great time to wipe the slate clean and do things differently. I hope you’ll find these tips helpful the next time medical care is required.

As we approach the change to 2016, I wish you an abundance of health and hilarity!

Happy New Year!