The Truth About Food Allergy Testing | Office Hours (Ep 124)

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[00:00:00] Welcome back, every Bendy Body to the Bendy Bodies podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility MD. Today we are doing another episode where you guys are my guest and I will be periodically doing these solo episodes. So be sure to submit your questions either on the website, bendybodiespodcast.com or I've also started a Google sheet, which is available on most of my social media platforms. In this episode, I will be answering the following questions. What does the new anesthesia time limit rule mean? How do coaching appointments work and how long is the wait list? What are some essential steps for managing mast cell activation syndrome?

What should you know about food, allergy testing, and so much more? I did want to share a quick [00:01:00] update since this episode was recorded. Fortunately, the rule that Anthem first introduced that was going to limit the amount of anesthesia time has been reversed. This is due to the intense pressure that Anthem received from people like you.

This is such an important example of why we need to use our voices and express our concerns when information like this is disclosed. Be sure to stick around until the very end so you don't miss any of our special hypermobility hacks. As always, this information is for educational purposes only and is not a substitute for personalized medical advice.

The first thing we're going to talk about in today's episode is an important change from Anthem Blue Cross and Blue Shield, one that can affect both healthcare providers and patients that are undergoing surgeries that require anesthesia. If you or someone you know is scheduled for surgery soon, or if you're a healthcare provider dealing with anesthesia services, this is a topic you won't want to miss.

Anthem Blue Cross [00:02:00] recently made headlines with a new policy that puts time limits on anesthesia coverage for certain surgeries. This new rule could have a big impact on how procedures are scheduled, how providers bill for anesthesia, and how patients are affected by these changes. So let's dive in and break down what this rule means for everyone involved.

So, here's the bottom line. Anthem Blue Cross introduced a time limit on how long anesthesia coverage will be included during surgeries. Essentially, this new policy restricts the amount of time that anesthesia can be administered during certain procedures. They are setting a hard time cap on anesthesia coverage.

If a surgical procedure runs over this designated time limit, Anthem may not cover the additional anesthesia costs. In some cases, this could result in the patient, meaning you, being responsible for paying for out of pocket costs for any extra anesthesia time. For many surgeries, the time limits are based on an estimate of how long the procedure should take.

But as you know, [00:03:00] Surgeries very often run longer than expected due to complications, the complexity of the procedure, or other factors. And the anesthesiologist and anesthesia team does not control how long the surgery takes. So if a surgery exceeds the allotted anesthesia time, the cost burden could shift from the insurer to the patient or provider depending on the circumstances.

Let's talk about how this impacts patients, and unfortunately, this is not good news. For patients, this rule means that if your surgery runs longer than expected and requires more anesthesia time than Anthem is willing to cover, you could be stuck with a hefty out of pocket cost. This is particularly concerning for people undergoing complex surgeries or those that are prone to unforeseen complications like people with EDS and HSD.

What's especially tricky about this new rule is you don't know in advance how long your surgery will take and your surgeon doesn't necessarily know either. So if your procedure takes longer than expected, you might be faced with an unexpected bill from your anesthesia [00:04:00] provider even though you thought your insurance was covering the entire procedure.

Patients should be aware of these time limits and be prepared for the possibility that their anesthesia coverage may fall short. It's a good idea for patients to communicate with their healthcare providers about this new policy. Providers might be able to help guide you through the process or offer some clarity about whether your specific surgery could potentially exceed the time limits set by Anthem.

Patients should double check their coverage before undergoing surgery. Contact Anthem, if you are covered by them, and ask about the specifics of your anesthesia coverage. How long it will be covered and what happens if the procedure exceeds that time frame. If you're concerned about potential costs, ask if there's an alternative way to handle the situation, such as a payment plan or options for reducing the likelihood of exceeding the time cap.

Most importantly, don't hesitate to speak with your surgeon or anesthesiologist if you have concerns. Be sure to communicate, especially if you've had problems with surgery or anesthesia in the past, [00:05:00] as that may influence how long your upcoming surgery may take and how likely it is to fit within that surgeon's expected time frame.

As always, stay informed and communicate openly with your insurance company and healthcare providers. That's the best way to navigate these changes. We'll continue to monitor this story and bring you more updates as they become available. Next, we are going to address a question from Christina. Christina asked, how quickly can we set up a coaching session or even an in person appointment?

My 21 year old college athlete daughter has been suffering for years. She has major mast cell issues, lifelong digestive issues, pain in the back, shoulder, and hip with a newly diagnosed labral tear, tight back and shoulder muscles, POTS issues, major anxiety and sometimes depression. We are putting all the pieces together but each individual doctor is not.

She is hoping to make it through her senior year of swimming, but not sure this is the healthiest option for her right [00:06:00] now. She is on H1 and H2 antihistamines and antidepressants. The hip doctor is recommending surgery. We are trying to find someone to look at all of these conditions together. Christine, I'm so glad you asked this question because I think it is probably quite confusing, the coaching option and the healthcare services option.

When someone becomes a patient, that means that I am their doctor and I can order lab tests, imaging tests, I prescribe medications, I will prescribe supplements. And I will prescribe a comprehensive treatment plan for them in order to be able to do that. I do need to see them in person first in one of the two states that I'm licensed in.

And those two states are Colorado and Wisconsin. Once I see a person in person, I can see them virtually for up to a year to follow up on those issues that we covered in person. When I follow up with them though, they need to be sitting in Colorado or Wisconsin during those virtual visits. I did. [00:07:00] Develop the coaching option for people who either cannot travel to come see me in person or for people who wanted a little bit more flexibility, which also includes being able to get in sooner for appointments with the coaching option because I don't need to see you in person first.

We can usually set that up in a much quicker time frame. So oftentimes people will schedule a coaching appointment within days of actually having that appointment. So I really encourage people if they think they might be interested in that service to go on the website and put their name on the waitlist and then they can see what the available options are.

If you go to hypermobilitymd. com and visit the services page, you'll be able to see a lot more information about these services, and if you visit the FAQ page, you'll see a lot of answers to frequently asked questions regarding the difference between coaching and medical services. Through the coaching services, I am not your [00:08:00] doctor, I am a doctor, but I don't become your doctor.

When I see you as a client and I am your coach, I will give you information and there are lots of things in there that you will be able to use. Many of them do not require your own health care team, but some of them will. But I won't be able to prescribe medications for you and I am not able to directly order lab tests and things like that.

So I hope that that answers Christina's question. Okay, the next question is from Joe. Joe describes herself as a long time listener and first time caller. As a Canadian bendy body, I wanted to ask you about the Good Hope EDS program in Toronto. I'm on a waitlist to be seen by them, but I have a few hypermobile dance friends who have had brutal experiences in being dismissed and medically gaslit.

It seems like the purpose of this clinic is to collect data on the effectiveness of the 2017 clinical criteria, but it is the [00:09:00] only connective tissue clinic in the country. So, in dismissing patients who don't fully meet the Beighton score at the time of the appointment, it basically condemns them to be told by their family doctors or rheumatologists, well, it's not hypermobility related.

One friend was dismissed because her pinkies were over 90 degrees, but more from the distal joints than from the MCP joint, which put her Beighton score at 3 out of 9 instead of 5 out of 9. Even though in the same year, a hypermobility specialist, physical therapist, and rheumatologist scored her as 7 out of 9 and 9 out of 9.

Another, with incredibly hypermobile feet, toes, wrists, jaws, and hips, and neck, was sent back to her PCP with a letter saying she has localized hypermobility only and does not present with any evidence of generalized joint hypermobility or internal connective tissue manifestations. No genetic testing is warranted.

But, they did not look at other issues including subcutaneous spheroids or skin [00:10:00] fragility. And another, arguably bendy, although short and not marfanoid, dancer friend patient also had booked an appointment with Dr. Paldip Atwal and was scoffed at and told they didn't value his diagnoses because they cannot be as precise virtually.

I totally recognize the value of specificity, but for hypermobile people to be told, nope, You don't have EDS according to the 2017 criteria, so go back to your family doctor and deal with your clearly symptomatic hypermobility and comorbidities on your own. Have other people had similar experiences? Are you aware of them discrediting Dr.

Atwell's practice? What are your thoughts? I would love to hear you discuss this on the podcast. Thank you so much. Okay. So there's a lot of different things in this question. Um, the first one that I would want to say is that unfortunately, sometimes more academic centers because people travel from such a distance, oftentimes they are more focused on the diagnostic process and not on [00:11:00] what I want to call longitudinal care.

So they're not as focused on taking care of a person over time. And they also, because they are a bigger institution, they really, really stick to very strict criteria. I want to refer you to the recent podcast episodes that I had where I interviewed Dr. Alan Hakim and Dr. Claire Frank Amato. In both of those episodes, I asked them specifically what do you do if you have somebody who fits all of the other criteria for hypermobile EDS, but their Beighton score is not high enough per the 2017 international consortium criteria for them to be considered having generalized joint hypermobility.

In other words, I posed the question to both of them, what do you do if someone has historical joint hypermobility and otherwise meets the diagnostic criteria for hypermobile EDS? Both of them said on the [00:12:00] podcast that they still diagnose that person with hypermobile EDS, and that's exactly what I do. So if I have somebody who maybe their Beighton score is 2 or 3 out of 9, we know that the score needs to be over 4 if you're over 50, or if you're between pubescent and 50, it needs to be 5, or if you're a pubescent, prepubescent child, then it needs to be greater than six, greater than or equal to six in order to be considered positive by the Beighton score.

But we do also have the five point questionnaire, so I rely very heavily on the five point questionnaire. I find this to be a very, very helpful tool, and so I think that it's really important to consider people that have historical joint hypermobility and or people who have hypermobility in other joints.

Dr. Hakeem, in my interview with him, covered this quite well and extensively. So I definitely recommend that you check out that conversation. In terms of [00:13:00] people discrediting someone else's practice, I do think that virtual practices have their place. And when I say virtual practices, I should explain that I mean purely virtual practices where there is no in person assessment at any point in time.

I think that there are great uses for that. However, I feel that there's tremendous value in that in person evaluation. I really like to touch the person's skin rather than just ask them if their skin is soft. I like to feel myself how stretchy their skin is and be able to see, actually with my own eyes without the interference of a camera, what their scars look like.

So while I think virtual practices can be really, really helpful for lots of people, I also think that in person assessments are really, really important. Okay, next topic. We are going to talk about mast cell activation syndrome. I know I talked about this last time on the podcast, but I want to talk about it a little bit again because it is such an [00:14:00] incredibly important topic.

So just a quick clarification, the mast cells in the body are in the immune system and they're involved in allergic type reactions. In mast cell activation syndrome, they become overly sensitive and they release hundreds and hundreds of mediators in response to triggers. These triggers can be both internal and external.

This can lead to a wide variety of symptoms in almost any part of the body. They can be allergic, can involve inflammation, or they can involve something called dystrophisms, and that's abnormal tissue growth. Fortunately, most of the time the abnormal growths are benign. Some of the things that we see involve skin rashes, flushing, hives.

Itching, gastrointestinal symptoms, and we can also see anaphylaxis. Managing mast cell activation syndrome can feel like a roller coaster because triggers can be so varied and individual, but there are some clear steps you can use to better understand your body and reduce the likelihood of [00:15:00] flare ups.

So let's break it down into two steps, identifying triggers and then addressing treatment options. So step one, identifying triggers. The first and arguably most important step is to identify what triggers your mast cells to release histamine and their other inflammatory mediators, because triggers can vary significantly from person to person, and so this requires some trial and error.

As I mentioned earlier, triggers can even be internal, such as hormones. So, here's how you can start identifying your triggers. Number one, keep a detailed symptom journal. Start tracking everything, and I can't stress this enough, a detailed symptom journal is your best tool. Record your symptoms, everything you eat, everything you drink, the medications you take, the supplements you take, and environmental factors.

Pay particular attention to the foods that you eat. Certain foods, especially those that are high in histamine, are common [00:16:00] culprits. For These might include aged cheeses, fermented foods, alcohol, and processed meats. One of the tricky things is a food can be a trigger in one person, but not in another person.

So tracking your own individual food triggers is very helpful. Some medications, especially over the counter pain relievers and antihistamines, can also affect mast cell activation. Cell stability, both positively or negatively. So, track your medications as well. Environmental factors to track include things like infections, pollen exposure, mold, fragrances, plastic exposure, or chemicals in household cleaning products.

You also want to track your physical stressors. These include emotional stress, temperature changes, and physical exertion, as these are often cited as triggers for many people with MCAS. Record not only when you feel symptoms, but also the severity and any potential patterns. Are your flare ups more likely in the [00:17:00] morning?

After meals or when exposed to certain chemicals. You also want to work with your doctor who understands MCAS. An allergist or immunologist might be the best fit, but not always. Unfortunately, MCAS is still under recognized and under appreciated. Testing may be performed, but unfortunately is not always helpful.

Serum triptase, which is one of the most specific mast cell mediators, should be measured, but it is not helpful if it is within normal limits. Tests may not always pinpoint the exact triggers, but they can sometimes give you valuable insights. The third part of this first step is to consider the common triggers.

These are some known environmental and lifestyle triggers that many MCAS patients experience. Transcribed These might include temperature extremes like hot showers or cold weather. They might include allergens like dust, pet dander, or pollen. They might include stress, both emotional and physical, as well as [00:18:00] toxins like cigarette smoke or pollution.

My mom likes to tell this story about when I was a young child, maybe eight years old or so, and I would ask people around me to stop smoking. I kind of forgot about that until just now. Being aware of these common triggers can help you refine your own list of possible culprits. You can then focus on eliminating or reducing exposure.

The second step is looking at treatment strategies for MCAS. Once you've identified your triggers, now you want to think about how you can manage and treat your condition. There's no one size fits all, but here are some common treatment strategies. Number one, avoiding known triggers, at least initially.

This may sound simple, but sometimes it can be the hardest part. After identifying your triggers, it's essential to make lifestyle changes that limit exposure, at least until your symptoms are reduced. For example, if certain foods are your triggers, you may need to adjust your diet temporarily to avoid histamine rich foods or work with a [00:19:00] nutritionist to create an MCAS friendly meal plan.

Not all high histamine or histamine releasing foods affect everyone the same way. If food is If a particular food is on a high histamine list but does not bother you, you might be able to keep eating it. If stress is a trigger, practices like meditation, yoga, and mindfulness can help you manage emotional stress.

The next part of treatment is medications. There are several classes of medications commonly used to control MCAS symptoms. The first one is antihistamines. These are the most common medications prescribed for MCAS. Both H1 or histamine 1 receptor and histamine 2 receptor antihistamines are used to block the effect of histamine, which is one of the mast cell mediators.

Some people find that adding the H2 blocker, like famotidine or pepsid, alongside the H1 blocker, like loratidine or cetirizine, works best. There are also mast [00:20:00] cell stabilizers. Drugs like chromelin sodium can help stabilize mast cells and prevent them from releasing histamine in response to triggers.

Chromelin sodium can be administered a variety of ways, including as a nasal spray and also orally. It can also be inhaled as a nebulizer, and Chromalin is a very old drug. I was prescribed Chromalin for my asthma when I was a teenager. Leukotriene inhibitors are the next class of medications. These medications, such as Montelukast, can help block chemicals released by mast cells that contribute to inflammation.

Corticosteroids can be used in very severe cases, but they also have long term side effects so should be used for only very severe cases. Next, let's talk about supplements. There are a number of supplements like vitamin C and quercetin, spelled Q U E R C E T I N, that can help reduce mast cell degranulation and histamine release.

Luteolin and [00:21:00] palmitolaethanolamide are other supplements that can be very helpful as well. Always consult with your healthcare provider though before adding supplements because there are certain contraindications and they can also interact with other medications. In addition to avoiding triggers, you want to make sure that you're incorporating lifestyle changes to support your overall health.

You want to make sure you're staying hydrated, getting enough sleep, and managing your stress. If you have more severe reactions, or if you're at risk for anaphylaxis, it's very important that you carry an epinephrine auto injector like an EpiPen. This is an emergency treatment for life threatening reactions, and you should have this on hand at all times if it's been prescribed by your doctor.

To wrap it up, managing MCAS is all about identifying your personal triggers, understanding your body's responses, and finding the right combination of treatments that work for you. Remember this process takes time and it's important to work closely with your knowledgeable healthcare provider. Stay [00:22:00] patient, keep track of your symptoms, and don't hesitate to seek support from others in the MCAS community.

Okay, next we are going to talk about Oral Allergy Syndrome and its relationship to EDS and mast cell activation syndrome. I feel like this is something that is very often misunderstood. Oral Allergy Syndrome, or OAS, refers to an allergic reaction that happens when you eat certain foods, which usually include raw fruits, vegetables, nuts, and seeds.

You might experience symptoms like itching or tingling in your mouth, lips, or throat, as well as swelling, scratchiness, or even a burning sensation on your tongue. These symptoms occur because the immune system mistakes these proteins for pollen proteins, such as those in birch, ragweed, or grass pollen, and triggers an allergic response.

Interestingly, cooking these foods can often make them safe to eat because the heat burns them. breaks down the proteins responsible for the allergic reaction. So OAS is typically only a problem with raw foods. The [00:23:00] reactions are sometimes mild, but they can also be very problematic. We know that oral allergy syndrome is more common in people with EDS.

People with EDS are also more likely to have multiple allergies or sensitivities. Everything from food and environmental allergies to autoimmune conditions. So if you have EDS, you might be more prone to experiencing OAS because of your heightened immune sensitivity. Another important piece of the puzzle is mast cell activation syndrome.

Many people with EDS also struggle with MCAS. In people with MCAS, foods, whether they're raw or cooked, can sometimes trigger the release of histamine and other chemicals leading to severe allergic reactions. So, even if you have OAS, the presence of MCAS can make your reactions more intense and harder to predict.

So you can have OAS, and MCAS, and of course, EDS. So if you have EDS and you're experiencing symptoms of oral allergy syndrome, plus or minus signs of MCAS, [00:24:00] how do you manage it? First, make sure you get the proper diagnosis. We're going to take a quick break, and when we come back, we are going to talk about food allergy testing.

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Okay, we're back, and now we're going to talk about food allergy testing. A lot of people with EDS and MCAS Deal with food sensitivities. And if you've ever wondered if food allergy testing is reliable or if it's even worth pursuing, you're not alone. We're going to take a closer look at the pros and cons of food allergy testing and whether or not it's always the straightforward answer we might hope for, especially when it comes to managing MCAS.

What is food allergy testing? First, we're going to talk about what food allergy testing typically involves. There are two primary types of food allergy [00:26:00] testing. The first one is the skin prick test. This involves placing small amounts of allergens on your skin and then pricking the skin in order for the substances to be allowed to enter.

If you're allergic, a raised bump or hive will form at the test site. The other type of food allergy testing is a blood test. These measure the level of specific antibodies, usually immunoglobulin E or IgE, that are produced when your body reacts to certain foods. The most common blood test is the RAST test or Immunocamp.

Now let's look at the pros and cons. The main advantage of food allergy testing is that it can help identify specific food allergens, especially if you're dealing with classic food allergies. The first key benefit is identifying these clear allergens. Food allergy tests can be useful for diagnosing IgE mediated food allergies.

If you experience allergic reactions such as hives, swelling, difficulty breathing, or anaphylaxis, these tests can help pinpoint which foods are triggering the [00:27:00] response. Knowing what foods to avoid can make a big difference in your quality of life and in your health. Food allergy tests can also help you take a structured approach to managing your allergies.

If you have an immediate type food allergy, meaning your body responds quickly with symptoms like anaphylaxis, food allergy testing can provide clear guidance on which foods to eliminate from your diet. For example, there are common food allergens like peanuts, eggs, and shellfish that can be accurately tested and identified.

Food allergy testing can also offer peace of mind. If you've been struggling with unexplained symptoms like digestive issues, skin reactions, or even headaches, testing might provide answers and eliminate some of the guesswork. It can also help with management plans. If you have EDS and or MCAS where food allergies can play a significant role in symptom flare ups, knowing which foods are safe to eat can help create a manageable plan to avoid foods that might cause inflammation or trigger mast cell activation.

I do want to briefly mention here [00:28:00] that another important consideration is The timeliness of which you are eating the food. When food sits, especially meat, it actually accumulates more histamine. So eating something like leftovers, especially if they've been left out of the refrigerator for a while and or been sitting in the refrigerator for a number of days, are more likely to cause a reaction than foods that are fresh.

So, whenever possible, if you do have food reactions, you want to make sure that you are eating foods as fresh as you possibly can. Okay, now let's talk about some of the cons of food allergy testing. Because while there are certain benefits, there are also important limitations. One of the biggest drawbacks, especially to the blood tests, is the potential for false positives.

This means that the test indicates that you're allergic to a certain food, but in reality, you're actually not. This happens because IgE antibodies can be present due to non allergic reasons. This can be especially confusing for people with MCAS who might have mast [00:29:00] cell activation triggered by many different substances, not just food.

In general, false positives can range from 20 percent to 50 percent in food allergy tests, particularly in cases involving mild allergies or when cross reactivity occurs. We can also get false positives for IgE based food allergy tests like the RAS, or immunocap. False positives can be relatively common.

Studies suggest that up to 50 percent of positive results for certain foods might be false positives, especially in individuals who have mild or moderate symptoms that aren't directly related to an allergic reaction. There's issues with specificity. For many common allergens like milk, eggs, and peanuts, the specificity is not as high as would be desired.

Specificity refers to the ability of the test to correctly identify people who do not have the allergy. Low specificity can lead to false positives, meaning the test may show an allergy even though the person is actually not truly allergic. Cross [00:30:00] reactivity is another reason for false positives. Some foods contain protein that are similar to others found in other allergens.

For example, if you have an allergy to birch pollen, you might test positive for certain fruits like apples or cherries due to oral allergy syndrome, even if you don't have a true food allergy. Another possibility is false negatives. This occurs when the tests fail to detect a food that is actually causing your symptoms.

For example, you might have a sensitivity to a food that doesn't produce a typical allergic reaction or your immune system may not react in the way the test expects. In the case of MCAS, where mast cells are overly reactive, you may experience food related symptoms like bloating, headaches, or fatigue that don't involve the IgE mediated allergic response tested for in traditional food allergy tests.

While the false negative rate is generally lower, it can still be significant, especially in non IgE mediated reactions or in cases of mild sensitization that does not trigger a detectable IgE [00:31:00] response. Next, let's talk about the overemphasis on food elimination. Sometimes food allergy tests may lead to overly restrictive diets, especially when false positives are involved.

For example, someone may test positive for a food that isn't actually a problem, and cutting out a wide range of foods unnecessarily can lead to nutritional deficiencies or unnecessary food avoidance, which can make life more difficult for people with complex conditions like EDS and MCAS. In the case of mast cell activation syndrome, the reactions are often not mediated by IgE antibodies, but by non IgE mechanisms.

Mast cells can release histamine and other chemicals in response to a wide variety of triggers that do not show up on traditional allergy tests. This means the tests won't always identify foods that activate mast cells, leading people with MCAS to mistakenly believe that they don't have food triggers when in reality they may.

Food allergy testing can also be expensive, especially when it's not covered by insurance. And [00:32:00] depending on where you live, access to knowledgeable providers who understand MCAS and food allergies may be limited. So while food allergy testing can be helpful, it's not always definitive and should be always used in conjunction with clinical evaluations, symptom tracking, and possibly other tests.

Well, what can you do instead? As we discussed earlier, you can keep a food and symptom diary. Definitely track your food triggers, as we discussed earlier. You may want to consider a trial elimination diet under the guidance of your healthcare professional or nutritionist. This may help you systemically remove potential triggers, and you start out by cutting out the most common culprits like dairy, gluten, or histamine rich foods for a period of time and then slowly reintroduce them one by one to see if symptoms reoccur.

If you suspect MCAS or another complex condition is at play, work with a specialist like a dietician, immunologist, allergist, or other MCAS expert in order to determine what's most problematic for [00:33:00] you. They may use a combination of clinical history, symptom tracking, and other lab tests in order to determine your treatment plan.

To wrap up, food allergy testing does have its place, especially for those with clear IgE mediated allergies. However, it's important to understand its limitations, particularly for people with mast cell activation syndrome or other complex conditions where food triggers might not show up on standard tests.

The most effective approach is often a combination of clinical evaluation, symptom tracking, and a trial and error approach to diet under the supervision of a knowledgeable healthcare provider. Okay, next topic, I want to talk about compounding pharmacies. Compounding pharmacies are different from traditional pharmacies in that they actually make their own medications or combination of medications.

Rather than getting the medications already as tablets or capsules, they will make their own tablets or capsules actually in their pharmacy. They're able to [00:34:00] customize the medications much more. Accurately for the patient's needs. One of the potential problems with compounded medications is that insurance often does not cover these prescriptions.

It is very important to find out in advance of an appointment with someone like me who often prescribes compounded medications to find out from your insurance company whether or not they will cover compounded prescriptions. This is particularly important because most compounding pharmacies do not accept insurance payments.

If you are one of the few people lucky enough to have your insurance cover compounded medications, make sure that you find a compounding pharmacy that accepts insurance. You also want to make sure that that compounding pharmacy will accept a prescription from your provider that might be in a different state.

You want to make sure that they will ship to you in your state. If you are prescribed a compounded [00:35:00] medication, I often recommend that people check out a variety of different compounding pharmacies and get pricing information, because it can vary really, really widely from pharmacy to pharmacy. Many compounding pharmacies do not include Dispense medication in the usual format.

They only do compounded medications, but some compounding pharmacies will actually dispense regular medications alongside compounded medications. When are compounding pharmacies really important? When a person has allergic reactions to excipients. So excipients are the quote unquote inactive ingredients in medications.

These include the dyes and the fillers and the capsules that are often used. Oftentimes, people are not allergic to the actual active ingredient, but they're allergic to these inactive ingredients. The great thing about that is that usually when we change up those inactive ingredients, the person can then tolerate the medication.

I find this extremely common in my [00:36:00] practice. Oftentimes, people will have tried a drug like low dose naltrexone. That is often used for pain, fatigue, dysautonomia, MCAS, um, et cetera. They might've tried this drug in the past, but they didn't tolerate it well. Oftentimes, if we write the prescription in a way such that the excipients are ones that they will tolerate, and we also do a more slow titration schedule, I find that most patients are able to tolerate naltrexone.

Next, I want to talk about off label use of medications. When it comes to managing complex conditions like Ehlers Danlos syndromes. POTS, or Postural Orthostatic Tachycardia Syndrome, or MCAS, you might hear your doctor suggest treatments that aren't typically approved by the FDA for that particular condition.

This is known as off label use. But what does that actually mean? We're going to break it down. Off label use refers to when a medication is prescribed for a condition or a patient population that it isn't officially approved for by the [00:37:00] regulatory bodies like the FDA. It doesn't mean that the drug is unsafe or ineffective.

In fact, off label prescribing is quite common in the medical field, especially for conditions that don't have a lot of established treatment options like MCAS and EDS. In fact, there are no on label treatments for EDS, so all medications that we use for EDS are being used off label. Also, for some drugs that are commonly prescribed to manage MCAS such as antihistamines, other mast cell stabilizers, or even certain antidepressants, these may not be officially labeled by the FDA for MCAS either, but research, clinical experience, and case studies suggest these medications can be helpful for managing symptoms of these conditions.

Off label use is extremely common in conditions like EDS and MCAS and POTS. Some examples, antihistamines like cetirizine or loratadine are typically used for seasonal allergies, but they also help block the histamine that triggers MCAS flare ups. [00:38:00] Crobalin sodium, a mast cell stabilizer I mentioned earlier, is often used to help reduce the degranulation of mast cells, but it's actually approved for conditions like asthma and gastrointestinal disorders.

Amitriptyline is a tricyclic antidepressant, which can be prescribed off label for its ability to help manage pain and improve sleep, both of which are critical for people with the triad. MCAS, EDS, You might be wondering, is off label use safe? The short answer is yes, but it's always important to have a conversation with your doctor before starting any new treatment.

Off label doesn't mean untested, it just means the medication has not been formally studied or approved for that specific condition. Many doctors prescribe off label medications based on the evidence of their efficacy and clinical practice, research studies, and patient experiences. Even as an anesthesiologist, so many of the drugs that we administer are used off label.

For example, fentanyl. Fentanyl is an opioid that many [00:39:00] people are now aware of. When this drug was first introduced, it was used intravenously in anesthesia and other clinical settings. Once a medication goes off patent, pharmaceutical companies rarely undergo research to get additional indications.

Fentanyl is a medication that we commonly would put in an epidural solution in combination with a local anesthetic so that the person could have better analgesia and not have as much of an impact on their actual ability to function. Often times these are called walking epidurals. The combination of bupivacaine, which is a local anesthetic, and fentanyl, which is an opioid, actually acts synergistically and makes it so the person can often walk while having an epidural that is still effective for pain relief.

So to sum it up, off label medication use can be an important part of managing the triad. If your doctor suggests an off label treatment, it's not because they're guessing. It's because they believe it will be effective for [00:40:00] you. As always, make sure to communicate openly with your healthcare provider about any questions or concerns you may have.

Another question I recently have received is how to support your child with the triad. I've received this question from so many different people phrased in so many different ways. If you're a parent, a caregiver, or a family member of a child dealing with a chronic condition like EDS, MCAS, or another complex condition, you know that it can be both incredibly challenging and deeply rewarding.

Chronic illness affects the child and also the entire family. I want to share some of the tips, insights, and encouragement I have for supporting your child through the ups and downs of living with a chronic condition like EDS. First, let's talk about the emotional impact of a chronic illness on a child.

Children are incredibly resilient, but living with a chronic condition like EDS or MCAS can be confusing, overwhelming, and even frightening. As a parent or caregiver, one of the most important things you can do is acknowledge their feelings, whether those feelings are frustration, sadness, anger, or [00:41:00] even fear.

Be open to conversations. It is so important to create space for your child to talk about what they're going through. Whether they're verbalizing it or not, children often carry heavy emotions that sometimes get bottled up. Ask questions like, how are you feeling today? Or is there something bothering you?

And let them know it's okay to talk about it. You also want to normalize the experience, help them understand that it's okay to have bad days. Living with a chronic illness can be unpredictable and there will be moments of frustration when their body doesn't work the way they want it to. Normalize those feelings by saying, I know you're frustrated right now and it's okay to feel that way.

This validates their emotions and helps them feel heard and understood. You also want to build a team approach. One of the most empowering things you can do for your child is to build a team approach for their care. This doesn't just mean work together. Working closely with their doctors but also involving the entire family and anyone else who plays an important role in their life.

You want to collaborate with your healthcare providers. Having a trusted [00:42:00] team of healthcare providers, whether they're specialists in MCAS, EDS, or pediatric care can make a huge difference. Be sure to have regular check ins with your medical team, ask questions about their treatment plan, and advocate for what your child needs.

It's very important to be proactive and have follow up appointments before a crisis occurs. One of the common mistakes I find is that people wait until things are really, really bad before they come for follow up appointments. You want to make sure that you are being proactive and that you are staying on track once you start working with a professional.

You also want to involve siblings. If your child has siblings, it's crucial to help them understand the illness as well. They may feel confused, jealous, or even frustrated when their sibling gets extra attention. By educating siblings about the conditions and its impact, you may help reduce misunderstandings and foster compassion within the family.

Family meetings where everyone has a chance to talk and share their feelings can help too. Here are some practical strategies for managing daily [00:43:00] life. You want to create a flexible routine. Chronic conditions can bring unpredictability, so creating a flexible routine can help your child feel more secure.

Have consistent mealtime, school, work routines, and bedtime rituals, but remain adaptable if there's a flare up or a difficult day. For instance, if your child is too fatigued to complete their homework, be open to adjusting expectations, but keep a balance with their overall goals. You also want to encourage self advocacy.

Teaching your child to advocate for themselves is a very powerful skill. As they get older, they'll need to speak up for their own health needs, especially when it comes to navigating school, extracurricular activities, and social events. Practice simple ways for them to communicate their needs, like saying, I need a break, or I need help, or having a plan for dealing with symptoms in public spaces or at school.

You also want to consider adaptive tools. Depending on the severity of your child's condition, adaptive tools like braces for joint stability and EDS or antihistamine medications for MCAS flare ups can [00:44:00] make a significant difference. Have a list of helpful devices or strategies ready to make day to day activities more manageable for your child.

One area I find people neglect very often is their own self care. Supporting a child with chronic illness takes a lot of energy, physically, emotionally, and mentally. Self care is not just a luxury, it is essential. You cannot pour from an empty cup, so it's crucial to find time for yourself, even amidst the caregiving demands.

Number one, you want to ask for help. Whether it's from friends, family, or professional support, don't be afraid to ask for help. You don't have to do this alone, and there's no shame in needing support. It could be as simple as a friend picking up groceries, a family member watching the kids for a couple of hours, or hiring a babysitter to give you a break.

Take time for yourself. As a parent, you may feel guilty taking time away from your child when they need you, but caring for yourself is actually also caring for them. Even if it's just 10 minutes to sit quietly, read a book, or go for a walk, taking time to recharge [00:45:00] can help you be more present when you actually are with your child.

You also want to find a support network. Connecting with other parents who are going through similar experiences can be incredibly valuable. Whether it's through social media groups, local support organizations, or online forums, having a community where you can share tips, vent, and lean on each other makes all the difference.

You also want to celebrate the small wins. Whenever you're dealing with a chronic illness, the big milestones like managing a symptom or surviving a difficult medical appointment are worth celebrating. But don't forget the little things, too. Whether it's a day when your child feels particularly strong, or a week when they manage a school assignment without needing a break, these moments matter.

Encourage your child to take pride in their resilience, even when they're facing challenges. You can say things like, you did such a great job taking your medication today, or I'm so proud of how you handled that tough situation. Positive reinforcement builds confidence and can help your child feel empowered even in the face of chronic illness.

So, to sum it up, [00:46:00] supporting a child with chronic illness involves being present emotionally, building a supportive team, finding practical strategies for daily life, and practicing self care for yourself. It is a journey and not always easy, but with love, patience, and a strong network, you can help your child feel empowered.

Navigate the challenges and thrive, despite the obstacles they face. Next, I want to briefly cover some of the survey feedback that we've received so far, and I want to thank everyone who has participated. The first thing I wanted to touch on is finding transcripts. Somebody commented in the survey that they were unable to find the transcripts online.

I want to make sure that you know how to find the transcripts. So this is what you can do. You want to visit bendybodiespodcast. com and select the episode that you're interested in. After you scroll down about halfway, you'll see an area where it says show notes. Where it says show notes, immediately to the right of that, it says transcripts.

If you toggle that button, if you click the word [00:47:00] transcript instead of where it says show notes, the show, the transcript will actually appear. If you would like, you can also save that transcript or you can use command F to find a particular word. I find this very, very helpful if someone asks me a question about a specific episode and I want to see exactly what I said.

So I often use the transcripts as well and I hope that you find that helpful. I also want to comment on requested guests and topics. So one of the requested topics was CSF leak. Don't worry, that is on the list and will definitely be covered. But there are some guests and topics that I need help with. I definitely want to cover hormonal issues.

A lot of people have asked about the menopause transition and effects of things like hormone replacement therapy. Trying to find the right guest for this topic though is a bit challenging. So if you have a suggestion, please let me know. You can email me at info@bendybodies.org or you can leave a message on the [00:48:00] Bendy Bodies podcast website.

It was also suggested that I interview a pediatric dietitian, so any suggestions for that would be great. Someone also suggested an episode on cheerleading. Another person suggested an episode, um, with a professional athlete with EDS, whether it be soccer, basketball, something like that. So if anyone, especially if they have, you know, Contact with that professional athlete and could make that connection, that would be great.

Someone else suggested talking about visceroptosis. This is when organs sag and this can be a huge problem for people with EDS. Sometimes surgical intervention is required and imaging can be particularly tricky because if imaging is done in the supine position, you often don't see the effect of gravity on the internal organs.

I would love to do an episode on this topic, so if anyone knows a good guest for that, please let me know. I wanted to also share some of the lovely comments that people made in response to the question, What are you enjoying and [00:49:00] appreciating so far about bendy bodies? One person says, I love all of it.

I've been a longtime listener. Because of my chronic pain and disability, I'm unable to work much, so I'm on an extremely low income with no assets or wealth. The information shared has been a lifeline for me. Sometimes it's frustrating when there are guests offering what seems like extremely expensive health care.

I worry that this area is also being quickly commodified, but I'm grateful for all the free content so far. I totally agree and do suggest that people be very wary of charlatans and people offering simple solutions. I will try to focus on future episodes on easy and inexpensive solutions as well.

Another person commented that what they enjoyed about the podcast is the way it renewed their faith in doctors. I also wanted to share a crazy thing that I have heard during a patient's appointment, and they did give me permission to share this. They were in another appointment with a doctor and report that this doctor [00:50:00] said, you are really complex.

Come back when you are well. That is of course a crazy thing because they're there for help. When they are ill. So I just wanted to share that. Okay, uh, we're going to take a quick moment to share a hypermobility hack and then we're going to wrap up. This week's hack is a helpful resource for you. I wanted to share with you about the 2025 Ehlers Danlos Society Global Learning Conference, which is going to be held February 7th to the 9th.

In Brisbane, Australia. The great thing though is this is a hybrid event. There's going to be three days of learning, collaboration, and networking in Brisbane, Australia. This hybrid event offers both in person and virtual options, making it accessible to individuals and families affected by EDS and HSD.

The theme this year is teamwork, emphasizing the importance of multidisciplinary collaboration in managing EDS and HSD symptoms and comorbidities. This event is ideal for community members, caregivers, and healthcare professionals. [00:51:00] They also have a free Junior Zebra program for kids and teens ages 6 to 19.

So I hope that you will attend the EDS Society Conference in Brisbane, Australia, whether it be virtually or in person. And please remember, this is not an either or. If you want to be up to speed on EDS and comorbidities, you should be attending these conferences and listening to all the episodes of this podcast.

You can learn more about this important event by visiting ehlers danlos. com slash events. That's spelled E H L E R D-A-N-L-O s.com/events. Virtual tickets are only $100 and in-person tickets are $300. There are also discounts for special groups and scholarships are also available. Well, that's all for today.

I hope you found this helpful. I wanna thank you for listening to this week's episode of. The Bendy bodies. With the Hypermobility MD Podcast, you can help us spread the word about joint [00:52:00] hypermobility and related disorders by leaving a review and sharing the podcast. This really helps raise awareness about these complex conditions.

If you would like to dig deeper, you can meet with me one-on-one. Please check out the available options on the services page of my website@hypermobilitymd.com. You can also find me Dr. Linda Bluestein on Instagram, Facebook, TikTok, Twitter or LinkedIn At Hypermobility MD you can find human content. By producing team at Human Content Pods on TikTok and Instagram.

You can find full video episodes up every week on YouTube at Bendy Bodies Podcast. To learn about the Bendy Bodies program, disclaimer and ethics policy submission verification, and licensing terms and HIPAA release terms, or to reach out with any questions, please visit bendy bodies podcast.com. Bendy Bodies podcast is a human content production.

Thank you for being a part of the community, and we'll catch you next time on the Bendy Bodies Podcast. Thanks for [00:53:00] watching!