There’s No Simple Test

One of the most frustrating things to hear from your doctor as you struggle to get a diagnosis is: there’s no simple test that is definitive. If you have a disease or condition like MS, celiac disease, MCAS, IBS, or any other autoimmune or dysautonomic dysfunction, you’ve may have heard similar things for YEARS while symptoms continue to diminish your quality of life.

Worse still, without a diagnosis, family and friends may begin to treat you like a hypochondriac. This can lead to trying to talk you out of your symptoms, treating you like you’re crazy, or refusing to honor dietary requests. A lack of diagnosis certainly doesn’t help you get the support you may need.

Gowned scientist in goggles, mask, and gloves holding a slide and pipette. Top of microscope visible.

Even though skepticism has grown around some scientific areas, most of us go into a diagnostic process believing we will come out with a definitive answer and a treatment plan. We have a sense that our doctor is as curious as we are to get to the bottom of the problem. This may sometimes be true. Often it’s not.

Sometimes because of a lack of imagination or curiosity, but often because of the limits of the tests themselves, one in 13 (almost 27 million) Americans are living with an undiagnosed disease. That number rivals the number diagnosed with diabetes. It’s almost 10 million more than the number who have been diagnosed with cancer.

Understanding the limits of testing may not get you to a specific diagnosis, but it can help you know what is still on the table even if your numbers look “normal.” How can you find those limitations?

Ask questions!

Hopefully you are already working with a health team that considers you an integral member. If not, you may want to consider a change. If so, you may still need an advocate to go with you to appointments.

When you’re the patient, there’s a lot to think about. You may become too absorbed in navigating the physicality of an appointment to ask questions for yourself or absorb the answers you’re given.

Prepare a general outline for your advocate and tell them your goals. They can help you get the answers you need.

Here are a few things you’ll want to cover:

Ask what specific tests are being done. Write down or text yourself the answer. You can look these up later.

Ask how the specific tests were chosen – the doctor is going to use their experience to get to a beginning theory of what’s wrong.

From that point, they’ll either get positive results or begin to eliminate things that aren’t wrong. All of this narrows the field of likelihood. But sometimes, it doesn’t mean you don’t have something. It just means they can’t be sure. Ask how specific the test is. Ask how accurate it is or what percentage of cases it catches.

Ask what the best next step is.

If you don’t like the approach, ask if there are other options.

Get another opinion to confirm.

Once you begin a treatment plan, give it time to work. If you are not getting positive results or you’re suffering from side effects worse than the disease itself, you may want to have your doctor revisit the plan.

It would be wonderful if there were perfects tests for every disease and condition that exists. There simply aren’t. But there are always new ones in development.

Without perfection, our best line of defense is information. Ask, and ask, and ask until you have the information you need.

Why Use a Marinade?

They also tenderize tough cuts of meat and reduce the formation of harmful chemicals when grilling.

White plate filled with grilled chops and flames in the background.

Tenderizing occurs when the acid in a marinade containing vinegar, wine, or fruit juice begins to break down the meat. Marinades that include papaya, guava, pineapple, and ginger contain enzymes that also break down tissue so fluid and seasonings enter the meat.

The two basic types of marinade are wet and dry. Wet marinades are usually prepared, then refrigerated while the meat marinates. A wet marinade typically contains acid, olive or sesame oil, and flavorings like herbs and spices. The flavor profile can vary widely.

The classic steak marinade consists of red wine vinegar, Worcestershire sauce, olive oil, salt, oregano, thyme, pepper, onion powder, and garlic. Jamaican jerk chicken or pork is marinated in a mix of onion, scallions, a hot pepper, soy sauce, olive oil, cider vinegar, fresh thyme, sugar, salt, ground allspice, ground black pepper, nutmeg, cinnamon, and hot sauce. A Mexican marinade would typically contain cilantro, cumin, oregano, chili powder along with garlic, lime vinegar and oil.

Marinades are fun to play with. Throw a few things in a bowl, taste (BEFORE you add raw protein), and adjust until you achieve the flavor you want. I rarely use a marinade recipe. I just decide a flavor direction and then start throwing things together.

Some people like using buttermilk or yogurt as a marinade base. For some recipes, a tomato base may be preferable. I’ve used diet coke as a base to marinate lamb and I’ve added leftover coffee or tea to marinades as well.

And you may not want a liquid base at all. Dry marinades are also an option. These marinades can have salt added to help break down proteins in the meat. Dry rubs will adhere better if you coat the meat with lard or oil.

For dry rubs, combining sweet, savory, and spicy is the goal. Light or dark brown sugar is a sweet element that will caramelize in the heat. Savory flavor comes from salt, black pepper, onion powder, garlic powder and herbs like cumin or coriander. Smoked paprika adds both savory flavor and mild heat. For additional heat, cayenne or chili powder will work.

Once you’ve mixed up a marinade and applied it to meat, how long should you leave it? Five to six hours will give you the best flavor and texture, but shorter and longer time frames are workable.

Overnight is probably the longest time frame to consider without the risk of stringy or dry meat. On the short side, ten to twenty minutes while you prep other elements of a meal can have a positive effect. I rarely go under thirty minutes, but I’m not a fast prepper so this works within the context of prepping a full meal.

Improved flavor, moisture level, and texture are solid reasons for using a marinade. If you aren’t in the habit, give it a try!

Let Curiosity Lead

If your physician has exhaustively tested and cannot provide a diagnosis to explain intestinal issues. itchy rashes, and fatigue you may want to let curiosity lead. When your health team begins suggesting the best next step is to consider dietary or environmental triggers, it can be easy to resist. Getting curious can help get you past reluctance to explore.

It’s easy to hear the suggestion of dietary or environmental triggers as I won’t be able to have anything I enjoy; or I’m going to have to spend time I don’t have cooking. To some extent, you may be correct. But it’s unlikely that you won’t be able to have ANYTHING you enjoy. And you will most likely find ways to spend less time than you anticipate.

The easiest way to move past a feeling of I CAN’T is to start wondering what, when, why, how?

Think of the process as a treasure hunt or mystery to solve. You may discover things you’ve known all along but put aside as silly or impossible. And you may feel better more quickly than you think.

What is causing the problem?

Keeping journals or lists is a good way to start determining what makes you feel bad or leads to specific symptoms. Write down where you are, what you just did, and what is happening when a symptom begins.

If you break out in a rash after your morning coffee. Write that down and also include the room where you consume it, and any other food, drink or medication you have taken. If you’re in the kitchen and someone sprayed a cleaner of some sort, record that too.

If you sneeze every time you go to the bathroom, mold or mildew may be a trigger.

If your chest feels tight when someone sprays a certain disinfectant, something in that product may be a trigger.

If you burp excessively or have reflux after eating chocolate, that may be a trigger.

It is time consuming to keep track, but it will allow you to see patterns that narrow the field. In the long run, that’s faster than hit or miss guesses.

When do I have a problem?

If you’re keeping a journal but not really seeing a pattern, observing when you have a problem can help. Before I figured out that my toothpaste was causing a rash, I observed that the rash went away when I was traveling in my RV. So, I had a problem when I was at home, but not as much when I was on the road.

From that observation, I made note of what I do differently on the road. While that didn’t immediately lead to me remembering my travel toothpaste was different, once I noticed my tongue felt swollen and my mouth felt unusually dry after I brushed my teeth, it became confirming evidence for trying a change in toothpaste.

Why do I have a problem?

Once you’ve observed when and where you have an issue, you can go back to asking why. This question can lead you back to your doctor to determine whether you have an allergy, sensitivity, celiac disease, or some other autoimmune condition or dysautonomia. Taking the patterns you’ve identified to your doctor can inform their next steps.

This is not an automatic guarantee you will get a diagnosis. There are many conditions that take years to diagnose. That’s frustrating and discouraging but doesn’t mean you can’t find some relief. There are diets you can try on your own without sacrificing nutrition.

How do I proceed?

Get support for your mental health. If your medical team begins to treat you as though you may be imaging symptoms, it can make you feel crazy. That doesn’t mean you are. Physical and emotional health are intertwined.

Ask questions. If you have read something you think could be related, ask your doctor about it. Take them a research study you found. Doctors are busy. They may not be aware of the newest research.

Get a second opinion or a third if you need to. If you have the means, you may want to consider getting a referral to a physician in a larger city or at a more diagnostically sophisticated hospital.

Take an advocate. If you’re exhausted and not sure you can absorb what you’re being told, take a trusted relative or friend with you to ask questions and note the answers.

Do what you can. When you discover a trigger you can safely eliminate that may be contributing to your symptoms, eliminate it and see what happens.

When answers are hard to come by, the quickest way to relief can be to let curiosity lead.

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Teal Pumpkins

If your child has a food allergy or sensitivity, be on the lookout for teal pumpkins this Halloween. The Teal Pumpkin Project began with one mother who wanted allergic children to have a great Halloween experience. https://www.foodallergy.org/our-initiatives/awareness-campaigns/teal-pumpkin-project It was later adopted by Food Allergy Research & Education (FARE) and made a national initiative.

Halloween illustration. Black square with round teal and blue circle containing flying bats, a bare tree, and jack-o-lanterns.

The idea is to provide non-food Halloween treats in teal pumpkins that are easily identified. This means an allergic child can go directly to treats that are safe for them. There’s no standing around feeling like the odd man out.

In general, filling a teal pumpkin with non-food treats is simplest for everyone because no labeling or label reading is required. One of the things that makes Halloween hard for the allergic is individually wrapped candy often has no ingredient list other than on the outside packaging. Once candy goes in a host’s bowl, there’s no label available for trick-or-treaters to check.

If your child is especially prone to feeling different, you may want to solicit help from friends and neighbors. Encourage them to participate in the teal pumpkin project. In addition, provide each one with a small bag filled with safe edible treats marked with your child’s initials. Text when you’re about to arrive and have them place the bag on the top of the teal pumpkin.

If you have a trick-or-treat route filled with teal pumpkin providers who choose non-food treats, you can also have a special pumpkin at home that has plenty of safe, edible treats for the end of the evening.

Your family might also choose to make some treats together like cake-ball spiders, lava cake dino-destroying mountains, popcorn balls, or caramel apples. The specifics will have to work within your child’s particular restrictions, but the memory-building family time can make everyone feel included.

Adapt your child’s favorites into scary appearance and ramp up the atmosphere by using Halloween themed serve ware. Don’t worry about perfection or trying to do too much. Going overboard can make a kid feel just as different as leaving them out.

The idea is just to let the child see that they are seen, considered, accepted, accommodated, and welcome as part of the family, crew, troupe, or friend group. I know that probably sounds like a duh statement, but othering from adults is an everyday occurrence. And children follow their example.

In spite of its national presence, your community, neighborhood may not yet participate in the Teal Pumpkin Project. In my city of 207,000, there’s currently one household on listed on the Teal Pumpkin Project map. Households may be rare in your area as well.

You can change that by becoming a Community Captain https://www.foodallergy.org/take-action/teal-pumpkin-project/teal-pumpkin-project-community-captain You’ll find many resources for getting started on the website.

Even if you don’t have time to be a Community Captain, you can add yourself to Teal Pumpkin Project map, print out one of the free participant signs or flyers, or mix a few non-food treats into your regular candy bucket.

My Halloween focus again this year is offering Breakfast Bags of nutritious food in addition to candy for anyone who wants one. Last year, I ran out in 30 minutes and had to throw together a few more from items in my pantry.

This state has the highest percentage of food insecure children in the nation. Allergies and sensitivities are a big deal. They can be life-threatening. Starvation is life-threatening as well.

No matter how you may view adults in your community, hunger and allergies are never a child’s fault. Providing for them is the least we can do. Please consider a teal pumpkin.

Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”