Another Chronic Disease For The Collection

Wine Tour 11

A selfie with #Selfie.

I started this post last fall—it’s long, so either settle in or be prepared to read it one part at a time. Little did I know back then that things would get worse before they got better. Life has been difficult. That’s life with chronic illness. For a long time I was clueless to the one festering under the surface. A rare one that most doctors don’t know about or only just learning about. I thought, along with my team of doctors, that I was just having

odd complications and flares of my known illnesses. My mouth and eyes were drier, almost as dry as they were before monthly acupuncture kept the Sjogren’s symptoms in check. The pain in my hands and feet, inflammation that could be tied to the inflammation causing the Sjogren’s to act up. The constant reactions to everything. And by everything I mean water and the minerals and chlorine in it, barometric pressure changes, mold, sinus fungus, various foods, plant and food phenols, seasonal changes, flowers, trees, grasses, weeds, and cold. Again, inflammation.

We weren’t wrong about the inflammation, we just had the wrong culprit.

Enter: Mast Cell Activation Syndrome.

My guess is I’ve had it for years, possibly my entire life, but the symptoms weren’t intense until March 2017. We flew into New Orleans two days after Mardi Gras for Dr. Cuz’s wedding reception that weekend. The typical allergic rhinitis started that first day only magnified by a million. Then came the plantar fasciitis roaring back like it wanted to be in the spotlight. It was followed by the worst menstrual cramps I’d had since starting on progesterone the year before. The day of the reception I was texting my cousin while fighting nausea and curled in the fetal position. Finding anything to help the symptoms in the middle of the French Quarter was difficult.

MCAS post 1

Jackson Square, French Quarter, New Orleans, LA

It was so bad that I couldn’t blog about anything I wanted to blog about when we got back. In fact, I couldn’t blog at all that year about all the great food I had while traveling.

Treatment with my team of doctors helped with my recovery and, after a few months, all was good. As good as it can be when living with multiple chronic illnesses.

Things took an about face in October 2017. I was glutened while flying out to L.A. At first I didn’t realize it was gluten since my reactions are normally silent. I’m pretty sure this means I ingested a significant amount. All I know is I was nauseated before landing in Salt Lake City and nothing was helping that normally does (mint & ginger). Waiting for all the passengers to board the second plane, I was sipping on ginger ale when a woman drenched in perfume walked by. That was it. Over four decades of flying and I used an air sick bag for the first time. At this time I still didn’t know I was glutened. Vomiting has never been a symptom for me. I wound up in the bathroom sometime after that, vomiting some more and then that was it. I was worn out and haggard, unable to nap on the short flight to Burbank.

MCAS post 3

In Heaven at Hogwarts. Yes, I had a Butterbeer. It was just as good as I imagined. And yes, I had Pumpkin Juice. Not as great as Butterbeer but it was cold and refreshing for the scorching heat.

It was the next day when my fingernails split vertically, which is usually what happens a month or two after being glutened, that I knew what was wrong. So there I was, on vacation and visiting with friends trying to get over the worst case of glutening I’ve ever experienced before the big day at Universal Studios, which was the main reason for going to L.A. I wanted to celebrate my birthday there, even if we went the day before, because 1) I hadn’t been to the Wizarding World of Harry Potter, 2) going there with Auntie Boogie is something we would’ve done to celebrate our shared birthday together—she was a major Potterhead and was the reason why I read the books, 3) Darth Vader was really into Harry Potter at the time and I knew witnessing his joy would make one more birthday without Auntie Boogie would suck a lot less, & 4) I’ve been so used to sharing my birthday that I like making it about someone else sometimes.

MCAS post 4

After getting queasy on The Forbidden Journey ride, I couldn’t tell if my stomach was angry about the ride or if it was telling me I was hungry. Turns out it was the latter. Felt better after a delicious and filling gluten-free lunch at The Three Broomsticks. I went to Universal with a list of all the gf options at every restaurant/kiosk around the park which made it easier on all of us.

I tracked down some charcoal in Orange County right before meeting up with a childhood friend and soul sister, Rad. I’m not sure it did much good but I took it for a few days anyway. I made sure, at least for the first few days, that I was eating healthier than usual. This meant at least one trip to Sun Café, one of my favorite places to go when we’re visiting my bestie.

MCAS post 2

Rad and her girlfriend (now fiancee) surprised me with Chocolate Decadence to celebrate my birthday early after an amazing gluten-free lunch (Loaded Veggie Tamale) with a spectacular view.

MCAS post 5

Lemon Ginger Burst at Sun Cafe.

MCAS post 6

Lettuce Tacos at Sun Cafe

I left L.A. sick. I remember spending a lot of time upon our return trying to recover but not really getting anywhere and taking a lot of OTC meds. Then I thought I felt well enough to stop the meds but as soon as I did, I was back at Square One. So, I started the meds again. Felt better for two days and stopped them again. Hello, Square One. Nice to see you again. That’s when it dawned on me that I wasn’t sick, I was reacting. That’s when I made an appointment for AAT. I left that appointment with a long list of things I was reacting to, pretty much the usual for me but this time all at once.

About the same time as our return is the when the pain in my hands and feet started daily. My doctor and chiropractor were stumped because it was in my joints and was worse in the morning but would usually abate after a few hours. It was so bad even gross motor skills were difficult. Even if the pain lessened by midday sometimes it wasn’t enough, making writing impossible most of the time and resulting in texting Chaz that takeout for dinner was necessary because I didn’t feel safe holding and using my kitchen knives to prepare dinner. Picking up a glass with both hands was sometimes iffy.

While this was going on, the plastic straw bans came up, as did renewed fervor for grocery stores to end their pre-prepared vegetables and fruits (peeled oranges, spiralized vegetables, etc.) and I spent a fair amount of time defending these things to friends and strangers alike. Having personal experience added weight to my argument that these are still necessary things. They give greater access and freedom to disabled people. Those days where holding a glass with both hands was iffy? Give me a plastic straw if we’re out. I’m not about to drop my drink and spill it everywhere because I can’t keep a good grip on my glass with two hands. Food-based straws mean people with food allergies can’t use them. Metal straws heat up from hot liquids, causing burns, and poses a danger to those who have tics and will involuntarily bite down on them—same goes for glass and pasta straws. Paper straws disintegrate too quickly and disabled people have been vocal on how this poses a danger to them aspirating on the wet paper. Reusable straws are great for those of us who have full use of our hands. However, those who are using straws because they can’t hold a glass are not likely to be able to wash them properly. I even Instagrammed a photo of a reusable straw of mine that is part metal part silicone—it came apart because the brush it came with is too big and got stuck. There were times I was using those pre-prepared vegetables knowing I wasn’t going to be able to use my spiralizer because the pain and inflammation in my hands would make it too difficult. Peeled oranges, as ridiculous as they may seem to able-bodied people, give disabled people the freedom to have an orange when they want one where they would’ve had to wait for someone to do it for them. And as my friend keeps reminding me, they allow family members of people with citrus allergies the ability to enjoy oranges without getting the oils everywhere and potentially triggering their loved one’s allergy symptoms. Keep that in mind when these things come up.

In January, my doctor mentioned low-dose naltrexone during my monthly acupuncture after I rated my pain that day rather high. I believe I put it at an 8. I had been up long enough for me to be able to have some function to get dressed and drive to the appointment but my hands were still bothering me. I have a great relationship with my current doctors. The integrative doctor I see monthly knows I don’t want to take medication unless I have to, so to her surprise, I said yes to LDN right away. She was expecting me to go home and do research on it. Only I didn’t have to. I had done it before when friends and fellow gf bloggers had started taking it themselves. I had forgotten all about it until she brought it up. It took a few months before the pain lessened on a regular basis. Most mornings I was able to wake up and not struggle with using my hands, or walking. There was still lingering tenderness in my knuckles, though. I still wasn’t writing much and I was still lacking spoons to do all the things. Keeping up with cleaning was about all I could manage. No extra exercise. No traveling. Even the thought of planning and packing for a trip was exhausting.

MCAS post 7

Loading doses of LDN from left to right: 1.5mg, 3mg, and 4.5mg

The allergy treatments continued weekly. Headaches. Dehydration. Inflammation. Pain. Rashes. Uncontrollable itching. Gastrointestinal pain (Xenomorph trying to tear its way out of my abdomen level pain). Upper gas—that’s what I called it because I didn’t know what else to call it because it wasn’t heartburn or reflux, just a feeling like I had to belch and if I let out a good one it would be over; unfortunately I usually resorted to GasX because it would become painful. Every time we thought we were making progress, I would react to something and that would open me up to reacting to five more things.

Then, one blessed August morning last year, the doc that does the allergy treatments brought up mast cells. It was something the founding doctors of the practice had recently learned about at a conference and brought it back to the rest of the practice. He said, “Basically, they cause you to react to things that aren’t normal.” “That’s me!” I exclaimed and then we both laughed.

Some of the symptoms of Mast Cell Activation Syndrome (MCAS) are:

  • Allergies, asthma, and anaphylaxis
  • Hives, flushing, itching, rosacea, and other skin rashes
  • Swelling, pain, and tingling in hands and feet
  • Blood pressure issues (can be high or low), high heart rate, palpitations, dizziness, fainting
  • Abdominal pain, gas/bloating, nausea/vomiting, GERD, diarrhea/constipation, liver fibrosis
  • Red and itchy eyes, runny/stuffy nose, other sinus symptoms
  • Chest pain and throat tightness, trouble breathing
  • Autoimmune disease, trouble recovering from infections, slow healing of wounds, blood cell abnormalities
  • Irritability, anxiety, depression, vertigo, insomnia
  • Fatigue, obesity, abnormal weight loss
  • Interstitial cystitis

In a nutshell, when mast cells activate is they flood the body with histamines. Light bulbs went off. There were times this year where breathing became difficult for no apparent reason. During my last appointment with my integrative doctor, I described it as feeling like someone was tightening an already too tight corset on me. One time when it got real bad last summer I took a Benadryl. I don’t know why I thought it would be a good idea since I tend to stay away from it. Sjogren’s + Benadryl = drier than a desert. But it worked. I was able to breathe once it kicked in. Same with heart palpitations. Again, I don’t know why I thought to use it but it worked. Turns out that’s what other “masties” usually use when mast cells are triggered.

In my searching, I discovered there isn’t just one medication for to help manage it. There are different classes of drugs that doctors use. I started with an H1 antihistamine: Claritin. And it worked. I was feeling better. For about a week. Then one day I just felt like crap. Pressure was pressing in on me from all over. It sucked big time. So much that I complained on Facebook that mast cells are assholes. A good friend has a son who had mastocytosis and told me Gastrocrom helped him a lot. The active ingredient in Gastrocrom is a mast cell stabilizer, one of the other classes that is used in treating mast cells. But she told me I also needed an H2 antihistamine since I was only taking an H1. I took a screenshot of a list of the H2s and told Chaz to pick one of them up for me on the way home from work. He brought home Zantac. In less than an hour, all the pressure was gone and I felt great again. So great that two days later I went for a walk for the first time in a long time, then some jerk ruined it by catcalling me.

I went to my next appointment with my integrative doc and chiropractor telling them how great I felt and how I was able to do things I hadn’t in a long time, that I was able to get shit done and walk on a regular basis. I wasn’t using eye drops and Biotene on a daily basis for dry eyes and mouth. The following week was my yearly checkup with my rheumatologist and discussed the new diagnosis. Despite feeling great, my labs came back with an elevated sed rate—inflammation was still happening somewhere in my body.

It only took a few weeks for that “feeling great” high to come crashing down. This is kind of like trying to get use to Adrenal Fatigue Syndrome. Figuring out how much I can manage without setting myself back from overdoing it. But I’ve also got triggers that I have no control over and as some masties explain, we can take every precaution but if our histamine bucket is already full any trigger will send us into a reaction no matter what. The week of my next monthly acupuncture breathing was difficult and I wound up taking a lot of Benadryl that week. Headaches. Pain. And then the night before my appointment, generalized anxiety.

The last few years I’ve been dealing with generalized anxiety not knowing it was a mast cell reaction. I thought it was because I work from home now and don’t have to deal with being out in public with other people all the time like before. One time it got so bad in the dentist’s office that I felt like crawling out of my skin and right on out the door while I was in the chair waiting. There’s no reason for me to be anxious there. I’ve been going to this dentist since we moved to Cincinnati. That should’ve been my first clue that something serious was going on. But I’m adept at masking things and if it’s not a major interference in my functioning then it’s not a problem.

I had Chaz pick up NasalCrom on his way home from work. The nasal spray I was using wasn’t working at all and NasalCrom’s active ingredient is a mast cell stabilizer. It helped but not to a great degree. The difficulty breathing and anxiety ratcheted up right before bedtime. I hate taking Benadryl before bed because I feel groggy the next day. I took what I thought was the next best thing: CBD oil. It took the edge off enough for me to get ready for and get into bed, but falling asleep was still difficult. At some point after I finally fell asleep, I woke up gasping for breath and in an absolute panic. I don’t know how I didn’t wake Chaz up. It was then that I gave in and took a Benadryl.

I was glad when I was finally on the table talking to my doctor the next morning. Explaining everything that I experienced that week in as much detail as I could, as well as letting her know about my sed rate. Because of the inflammation, she went with their protocol to have me start Palmitoylethanolamide (PEA). It’s an OTC supplement so I ordered it as soon as I got home and started it as soon as it came in. It’s helped a lot, but mostly with the anxiety. I haven’t had a major anxiety attack since I started it. It was earlier this year that a research scientist who runs a group on Facebook firmly told the group (because it had come up in a post), mast cell disorders cause anxiety. It really never hit home for me until she said that even though I had a list of symptoms that included it.

This past winter was difficult. Even though I was feeling better and able to keep up with household tasks, there were days when the pain and inflammation were still bad. The cold didn’t help. Winter felt like a months long reaction that I had no control over other than weekly AAT to help. I also developed a rash that was barely visible on the back of my hands and the sides of my fingers. It looked just like the rashes I would get when I was having an IgE reaction to gluten, eggs, or any other food. AAT wasn’t really helping with the rash like it’s done in the past. I remembered the group members of the previously mentioned Facebook group recommending Magic Masto Lotion to everyone who asked about how to treat skin reactions. I had to order the Vanicream (but any really thick lotion without a lot of additives can be used) but within two days I had some mixed up and it was at least helping to reduce the itching and preventing further spread.

The beginning of the year my integrative doctor gave me an ultimatum, do the low histamine diet or she wouldn’t consider more meds. She had brought up the diet in October and I cut out some high histamine foods (coffee didn’t last long) and decreased the frequency in how often I ate others. With my birthday and the holidays approaching, I didn’t want to be in the middle of an elimination diet.

Reluctantly, I sucked it up and removed all high histamine foods (and drinks). Much of what I had to remove from my diet years ago and was able to slowly reintroduce happened to be high histamine (again, another clue that none of us knew at the time the testing was done). This was probably the most challenging elimination diet ever. It doesn’t help that there are so many lists online that vary to minor degrees from each other. My friend Cheryl Harris, a dietician and fellow gf blogger, sent me the lists she had that I compared with what my doctor gave me and this is what I wound up removing:

  • Alcohol
  • All forms of chocolate
  • Soda
  • Coffee
  • Tea
  • Aged, smoked, cured, canned, and processed meat, poultry, and fish
  • Leftover meat, poultry, and fish. (and later any leftover veg cooked with acceptable dairy products)
  • Bone broth
  • Pickled, canned, fermented, and soured foods (including gf shoyu, condiments, olives, sour cream, buttermilk, yogurt, kefir sourdough)
  • Aged or raw cheese
  • Dried fruit, strawberries, raspberries, citrus, avocado, cherries, banana, papaya, pineapple, mango, and plums
  • Tomatoes, spinach, eggplant, pumpkin, mushrooms, and commercially prepared salads
  • Chickpeas, soy beans, and peanuts
  • Walnuts, cashews, sunflower seeds
  • Eggs (especially egg whites, some can tolerate a small quantity cooked in food)
  • Cinnamon, chili powder, cloves, anise, nutmeg, curry, cayenne, baking powder and other chemical leavening agents, yeast
  • Tartrazine, benzoates, sulfites, MSG, nitrites, and food coloring

 

I was absolutely miserable. First, I was constantly hungry and for this reason I almost stopped before I was done with week two. Second, I was obsessing over what I could and couldn’t have and truly felt I was heading into eating disorder territory because I was afraid to eat. Third, I was afraid to eat because I was still having reactions during or after meals. There were days I didn’t eat breakfast because I didn’t know what to eat. Some mornings I made grits (lots of butter) or oatmeal (but I missed the heavy doses of cinnamon and dried fruit). There were also days in which I didn’t eat breakfast and by the time lunch came around I didn’t want to eat but I would get lightheaded and forced myself to eat. I knew this wasn’t healthy.

I realized that while I couldn’t have bacon, I could have pork belly. So I went to Whole Foods—the only place I can find it in my area, even the small market with a butcher down the road from us doesn’t carry it—and bought a couple, sliced them up and froze them so they were ready for mornings or for use in dinner. At some point it got less stressful, but it never got easier. I think the hardest part has been to only cook what is needed for the meal instead of making enough for leftovers to have for lunch the following day or to freeze for later use. I’ve relied on leftovers for my entire adult life and it’s just weird not being able to make a big pot of stew or soup and freeze it for another week, or to heat up leftovers for lunch the next day. I felt like I was spending all my time in the kitchen cooking and then cleaning up with little time for anything else. Reality: it wasn’t all my time, just a significant amount more than usual.

Because the reactions never really stopped while all the low histamine foods were out of my diet (even the rash on my hands didn’t go away), I asked my doctor at the end of February for a mast cell stabilizer—Gastrocrom. She agreed without us needing to discuss it because she knows I don’t ask for meds unless I truly need it and after years of using only alternative medicine to treat this (even if we didn’t know what we were treating in the beginning) I needed to be able to function again. I had to stop writing. Every time I sat down to work on Tainted Love, I would work on scenes/chapters, sometimes for days, and then realize that what I spent so much time working on wasn’t usable. Brain fog sucks. While writing, I didn’t have the ability to ask myself the questions I would normally ask myself as I’m working so I wouldn’t spend so much time on something that won’t survive the editing process. Instead, I did a lot of cleaning/reorganizing, reading, and binge-watching. Some of that binge-watching might’ve included daily viewings of Aquaman and Spider-Man: Into The Spider-Verse (hapa representation!) as well as To All The Boys I’ve Loved Before, Searching, and Crazy Rich Asians (Asian representation!).

My prescription was called in and then I waited. It took several days before I got a call from a pharmacy tech. She asked if I was aware of the cost of the med and I told her I wasn’t. After insurance was applied: $1,327.55. After. Insurance. And this was for cromolyn, the generic for Gastrocrom. That’s more than our rent and utilities. The tech told me to look for coupons online. I went to pick it up later that night, coupon in hand, only to find that using the coupon meant it would cost more than using insurance. Our healthcare system is fucked up, folks. I was at the pharmacy for a good half an hour as the pharmacist double and triple checked her math to make sure I needed all the ampules and that the coupon was indeed worth less than I was told it would be. She asked me if there were any other alternatives I could take and I answered that the only other mast cell stabilizer is Ketotifen. She and the pharmacy tech both had that “yikes” look before she said, “Yeah, that’s even more expensive.” Tell me something I don’t know. I broke down at the counter while she was back at her computer and then again in the car before going home empty-handed. The entire time I had been doing the mental math. There was nothing I could cut from our budget that would suddenly make a med costing $1,327.55 per month “affordable.” The only way a med that expensive would be affordable is if we were billionaires. I left with printouts of the prescription and the receipt that included how the prescription was filled. I was going to have a lot of work to do.

MCAS post 8

Fo’ real kine.

Have I mentioned that stress is a trigger for a mast cell reaction? It is. The following morning I felt horrible. I had trouble moving. I could feel the inflammation in my body hindering it from doing what I needed it to do. If I’ve learned anything from years of chronic illness, it’s to listen to my body. I did nothing all day. The worst part of that stress reaction is I had already successfully reintroduced eggs. Instant reaction to eggs as my breakfast because my histamine bucket was already overflowing.

The day after I felt better enough to start tackling the issue of acquiring the cromolyn that I knew I needed without dipping into our savings. I called the pharmaceutical company to make sure they didn’t have a patient assistance program (there isn’t one listed on their website). “We already sell our products to pharmacies at wholesale,” was the excuse I was given when I was told they didn’t have one. I really wanted to retort with, “That’s what every pharmaceutical company does and yet others manage to still have assistance programs,” but I didn’t want to stoke the stress reaction. I just find it hypocritical to state on a website that you strive to provide affordable medications and yet at least one of them isn’t.

I had crowdsourced suggestions the mast cell group on Facebook, I was specifically looking for how to get the insurance company to cover more of the med. Several people suggested getting it compounded. I wasn’t sure I could get that done and I really didn’t want to pay for shipping through the pharmacies some were suggesting, because I really wasn’t fond of paying for shipping for my LDN that was being filling by a compounding pharmacy in Florida. However, I stuck that information in my back pocket.

Next, I called the insurance company’s specialty pharmacy and wound up being transferred to the company’s regular pharmacy after being told they didn’t handle that med. Turns out the specialty pharmacy does handle the med but the guy at the regular pharmacy I was transferred to helped me out anyway. It was going to cost over $900 for them to fill the same prescription. The difference being if I filled through them my co-pay is 25% as opposed to 35% for other pharmacies (if you do the math, it would be over $5K per month without insurance). That was still too expensive for me. The guy, trying to be super helpful, made the same suggestions as my pharmacy’s tech that I spoke to two days before, even though I kept telling him that I already tried that and it was more expensive. While I appreciated his help, I found myself more frustrated when I kept telling him I had already looked into something he suggested and yet he continued to go on about it. Have I mentioned I really don’t like talking on the phone the way I used to anymore? Blame the years of waiting on hold while I was a case manager trying to do Medicaid recertifications. I’m talking hours of waiting.

Before logging off my computer and deciding I had enough for the day, I shot an email off to the pharmacy that compounds my LDN, asking if they compound the med I need and how much it would cost.

I never heard back from the pharmacy and started a search for a local compounding pharmacy. I contacted the wrong location of one and they were supposed to forward my question on. I say “supposed to” because I never heard back from them either. Turns out, there’s one a couple of miles down the road from me and the pharmacist who responded to my email was not only helpful but made sure he had all the specifics in order to convert the liquid dosage into a capsule dosage and give me an accurate estimate, which turned out to be just over $300 per month. It’s still high but I wouldn’t have to touch our savings to pay for it. He contacted my doc to get an updated prescription and I decided that when my LDN ran out, I would start getting it filled there.

Could I have afforded the original prescription? Because surely the deductible kicks in, yeah? Just fill it and once the deductible kicks in there’s no copay. I did the math. It’s still cheaper to pay out of pocket for the compounded version I’m getting, plus it’s easier to take than opening 8 ampules 4 times a day to add to a liquid to drink. The pharmacist said the capsule would be better if I want it to work systemically, which is exactly what I needed it to do.

MCAS post 9

One month of compounded cromolyn.

The day of my next AAT appointment, I told my doc about the stress reaction and then the reaction to the eggs the next morning. I had since been fine with eggs but he had me remove them again for a month. Like the silent reactions I have with gluten, mast cell triggers can do the same. Taking away the fuel for the fire would help quell the histamine production.

Meanwhile, I was expecting the cromolyn to take a few months before I noticed anything. However, within a few days I noticed my sinuses were clearer. I made the mistake of stopping the NasalCrom and the nighttime dose of Zyrtec because then spring hit and I turned into another hot mess of sneezing, itchy and runny eyes, stuffy nose. I added back the NasalCrom and second dose of Zyrtec. I also turned all the air purifiers in the apartment back on. I had stopped using them last fall. AAT saved me once again.

While I felt the cromolyn was working as it was meant to, I could still feel the inflammation working to keep me from being as productive and functional as I could be. At the beginning of May, I asked my doc about adding in a COX inhibitor. Inflammation in mast cell patients is often caused by excessive prostaglandins. I knew and felt the inflammation in my body, it is like being trapped in a cloud. Whenever I woke feeling the pain and inflammation was higher than usual I would take an aspirin and the cloud would lift. I could’ve asked for testing first but knowing that the aspirin works and the testing for prostaglandin levels being iffy, with the validity of the results being totally dependent on whether or not the sample was handled at the right temperature from collection point to testing point. I already knew the aspirin worked, it was a matter of discussing it with my doctor before taking a daily dose and whether or not aspirin or celecoxib would be most appropriate. I had already asked the Facebook group what their experience with a regular dose of aspirin was and it was mostly positive, the rest either had side effects (without telling me what their dosage was) or they were judgmental about taking more meds. One person asked me, “Why would you put more toxins in your body?” BECAUSE I FUCKING NEED THEM TO FUNCTION! I didn’t reply with that but I was blunt in letting her know that her judgment wasn’t welcome or even an answer to my original question. Do I want to be taking the shitload of meds I have to take? No. Would I be taking them if I didn’t have to? No. Have I tried alternatives? Hell yes I have. I’m not going to walk around not wearing either my glasses or contacts all day to make functioning more difficult. Why would I deny myself the ability to function because medications are demonized? I wouldn’t. It’s one thing to ride out a cold or a mild sinus infection without cough syrup or antibiotics, it’s another to do without a meds for chronic illnesses, physical and mental.

After discussing it with my doc—which included educating me on how high a dose I’d need to take for me to experience side effects—I started low dose aspirin (81mg) with the instructions to take a regular dose (325mg) as needed. My executive functioning has improved, I can order my thoughts a bit better, I don’t feel the inflammation all the time, my knuckles aren’t tender 24/7, and I’ve been able to start doing Morning Pages again.

It’s not all sunshine and roses now but it’s better. I can tackle longer To Do lists that I schedule each day in my bullet journal. I’m sleeping better, almost 8 hours a night, thanks to the LDN and a weighted blanket. The additional sleep I’m able to get every night as opposed to 6-7 interrupted hours nightly helps combat the physical stress every day. I know how elusive sleep can be, battling insomnia for decades, and I wish more doctors would take insomnia seriously rather than just telling us to get more sleep in the same way they tell women to lose more weight in order to resolve whatever symptom is interfering with our functioning. I also don’t need to take Benadryl PRNs as often as I was before the cromolyn and aspirin.

All I can do is continue to take it one day at a time.

 

RESOURCES:

The Mastocytosis Society

Mast Attack: Educating People About Life With Mast Cell Disorders

Magic Masto Lotion recipes – I made the one using NasalCrom.

Advertisements

Cheerios Petition v2.0

CheeriosA couple of weeks ago, a new petition on the not-so-gluten-free Cheerios was brought to my attention. It was started by Jonathan Schwartz, father of a young son with allergies who had a reaction that resulted in being taken to the hospital by ambulance last year. This is by no means the first case of a child ending up in the hospital because Cheerios are not gluten-free. If you recall, the mother of a boy whose son was hospitalized at the time she signed the petition, had no idea that the Cheerios was not truly gluten-free and he had been eating it even while in the hospital, which gave her the explanation about why he was not improving under medical care. I don’t know what happened to that boy or his mom, but their story and that of Jonathan’s son are ones I wanted to prevent when I started the first petition in 2015.

This new petition has gained a lot of signatures in a short amount of time. I messaged with Jonathan to lend him my support and discuss how timing likely has a lot to do with the signatures on the petition so far (as I’m writing this, the petition has nearly three thousand signatures.

We know that thousands had gotten sick from Cheerios labeled gluten-free by the time the first petition had been up for a year. We have this information thanks to the work of Johnna Perry of In Johnna’s Kitchen and Shirley Braden of gluten-free easily collecting reports not only on the petition but on social media as well. If all this is new to you, this is the heat sink map that Johnna created from the reports.

Cheerios heat sink map 92915

Heat sink map of 169 illness reports from “gluten-free” Cheerios on the Change.org petition as of 9/29/15. Note how the majority of reports are on the opposite side of the country as the Lodi plant and that this was BEFORE the recall. Map by In Johnna’s Kitchen, used with permission.

While Cheerios did a voluntary recall, claiming oats were transported on a non-gluten-free train to the Lodi plant, the reports are mostly clustered on the East Coast that would’ve received boxes from plants closer than Lodi.

Cheerios 3

Does the Celiac Disease Foundation really have our best interests at heart now that they are being sponsored by Cheerios?

One issue that I still see as a problem is the continuation of our advocacy groups taking money from General Mills and not protecting us the way the Canadian Celiac Association did when they advocated for and successful in the removal of the label on Cheerios in Canada. We have yet to see any of our advocacy agencies do the same here in the U.S. It’s infuriating that the Celiac Disease Foundation still has their name on boxes of Cheerios that continue to make those with Celiac and NCGS sick. Remember back in 2012 when the NFCA certified Domino’s gluten-free pizza crusts despite not having separate prep area, meaning it would go down the same line as all pizzas with utensils and toppings that have come into contact with gluten. Alice Bast only walked back the certification after pushback from the Celiac and NCGS community. The agencies haven’t gotten the same pushback on Cheerios. The agencies, bloggers, and magazines are only too happy to align themselves with a product that has shown time an again through reports of illness and scientific testing (thanks to Tricia Thompson of Gluten-Free Watchdog) that it is not a safe product.

I encourage you to sign Jonathan’s petition so we can do what the agencies that are supposed to protect us won’t do, get the gluten-free label removed from Cheerios. I ask that you share it with others who will sign even if they aren’t gluten-free. You don’t have to experience something to help advocate for change. You can follow Jonathan on Twitter here.

I would also encourage you to stop donating to the advocacy agencies if you are until they start working for what’s best for us and not their bottom line. There is no point in having an advocacy agency that won’t advocate. Also, stop subscribing to gluten-free magazines that take ad dollars from General Mills. Boycott General Mills and confront gluten-free bloggers who are doing positive posts for Cheerios. Remember that purity protocol oats are the only safe oats for those with Celiac, NCGS, and wheat allergies. You can find a list of suppliers and manufacturers of purity protocol oats here.

IF YOU HAVE HAD A REACTION to a product labeled gluten-free, do NOT throw away the packaging. Please contact FDA’s MEDWATCH, the Adverse Event Reporting System to report it. You can do this online https://www.accessdata.fda.gov/scripts/medwatch/index.cfm… or via phone (800) 332-1088. Choose option #4 to speak to a representative. Please make sure you pass this on to anyone else who will find it helpful. We don’t have to accept products on the market that companies are making under mediocre conditions because it’s better for their bottom line than it is for our HEALTH.

There are over a million of us with Celiac and NCGS, if we work together and have those not in our community supporting us, we can effect change.

 

Previous posts:

Effecting Change

The Gluten-Free Cheerios Deception

The State of Gluten-Free Advocacy

Trust Your Gluten-Free Oats & Support a Gluten-Free Farm

 

Gluten Free Watchdog Cheerios News:

Manufacturer Use of Regular Oats in Gluten-Free Foods

General Mills “Gluten-Free” Cheerios

More thoughts on gluten-free Cheerios

Gluten-Free Cheerios: Take Two

Gluten-Free Cheerios: Take Three

Updated Position on Gluten-Free Cheerios

Sick After Eating Gluten-Free Cheerios?

Why mechanically and optically sorted “gluten-free” oats continue to keep me up at night

Tips for Going Gluten-Free

CPK 4When you are first diagnosed, it’s a bit overwhelming to try to figure this whole thing out. Usually, if you have a good doctor, they’ll send you off with what to look for in ingredients at the grocery store and the most common types of processed foods with gluten or likely to contain gluten–bread, soup, soy sauce, gravy, dressings, etc.

What is often missed is the other products you need to be watching for, like personal care products and medications. Or what you need to buy for your kitchen to ensure it’s gf, especially if you are going to have a shared kitchen. How will you figure out what’s safe when eating out? What do you do if you accidentally eat gluten?

First, do not panic. It will be okay.

PERSONAL CARE PRODUCTS

Personal care products aren’t usually at the top of someone’s list to check for gluten. I remember hearing/reading debates on whether or not gluten can be absorbed through the skin. The plain fact is anything that reaches your lips or gets inhaled through your nose gets to the digestive system. So, if you have a hairspray or hair product with gluten in it, you can still inhale it or touch your hair and then grab a carrot stick that you shove in your mouth. Same goes for makeup.

Oats in personal care products are only safe if they are grown through purity protocol. If “purity protocol” is a new term for you, go here to learn more about it. Oats do not contain the gluten protein like wheat, barley, and rye, but are usually processed with those grains and therefore contaminated. Many food companies right now are using “sorted oats” (see the previous link for information on this if needed) in their gluten-free products and it’s making us sick. To make it easier on myself, I just avoid any personal care products with oats listed. I’d rather be safe than sorry.

The Gluten-Free Makeup Gal is a great resource for gf makeup. She has a list of products/brands that she keeps updated as she gets information. It’ll take out the guesswork, but ingredients should still always be checked.

Keep in mind that gluten from other people’s personal care products could transfer to you through touch. This is not something that I worry about too much since I’m not in physical contact with a lot of people on a daily basis.

Make sure the products your hair stylist uses are gluten-free. This means you’ll have to read the labels. The place I go to has a listing (it’s an Aveda salon & spa) and keeps my allergies/intolerances in my record, but I still double check products if they want to try something new.

The following is a list of gluten derivatives used in personal care products (not a complete list):

  • Amino peptide complex
  • Amp-isostearoyl hydrolyzed wheat protein
  • Avena sativa (oat) flour
  • Avena sativa (oat) flour kernel
  • Barley derived
  • Barley extract
  • Disodium wheatgermamido PEG-2 sulfosuccinate
  • Hordeum vulgare (barley) extract
  • Hydrolyzed wheat gluten
  • Hydrolyzed wheat protein
  • Hydrolyzed wheat protein PG-propyl silanetriol
  • Hydrolyzed wheat starch
  • Hydroxpropyltrimonium hydrolyzed wheat protein
  • Oat (avena sativa) extract
  • Oat beta glucan
  • Oat derived
  • Oat extract
  • Oat flour
  • Phytophingosine extract
  • Rye derived
  • Sodium lauroyl oat amino acids
  • Triticum vulgare (wheat) flour lipids
  • Triticum vulgare (wheat) germ extract
  • Triticum vulgare (wheat) germ oil
  • Tocopherol*
  • Tocopherol acetate*
  • Vitamin E*
  • Wheat (triticum vulgare) bran extract
  • Wheat amino acids
  • Wheat bran extract
  • Wheat derived
  • Wheat germ extracts
  • Wheat germ glycerides
  • Wheat germ oil
  • Wheat germamidopropyldimonium hydroxypopyl hydrolyzed wheat protein

*These ingredients are not always derived from gluten.

When in doubt about the ingredients listed, call the customer service number on the product to verify. If you have any doubt, it’s better to move on and find something else than to chance getting sick.

 

MEDICATIONS

Gluten is often used in medications as a filler (it has no other use in medications other than that). Because the FDA ruling on labeling last year does not include medications, companies are NOT required to print on their packaging if medications contain gluten. For prescriptions, even pharmacists don’t check (unless you have an awesome pharmacist). The key for prescriptions is to know ahead of time. I use the following: http://www.glutenfreedrugs.com/. I keep a printout in my medical binder that I take with me for all major appointments. The list is subject to change based on the companies changing formulas. Make sure once you and your doc decide on the right med, that they write the script as “DAW” (dispense as written), that’s the instruction to the pharmacist to not sub for a cheaper generic or for something by another company because they are out of what you need.

For OTC meds, if you are unsure of the ingredients, ask the pharmacist if they know. Otherwise, call the customer service number on the packaging.

Make sure your dentist uses gf products in your mouth. Because I avoid fluoride too, my hygienist uses a pumice to clean my teeth. I find I like the pumice better, it’s finer than the teeth cleaner they have and feels less gritty to me. (I know, I’m weird)

SHARED KITCHENS

It is common for one or two family members to go gf and the rest of the family continues to eat gluten in the home. There are precautions that need to be taken when this happens.

If gluten-full flour is being used to make something, take it outside. The flour will get in the air and can be breathed in, causing a glutening even if you didn’t touch or eat it.

You will either need two toasters or special toasting bags if you want gf toast (or you can toast in the oven). I had bought a toaster oven, but Chaz stopped having gluten-full bread in the house and we got rid of that toaster. The toaster oven is also handy when I want to reheat leftovers like I would in the oven, but don’t want to use the oven.

Anything that is spread on something gluten-full with a utensil you will need two of, one for dedicated gf use. OR gluten eating members can flick the condiment onto their bread if they think they need more and then spread when they are done with it. More and more things are coming in “squeezable” bottles like jelly, mayo, etc. These can eliminate the need for double of everything. Everyone in the house has to mindful. The gf items will need to be clearly marked (special stickers, etc. whatever you choose and is easy for everyone to remember).

Stainless steel pots and pans are your best bet for shared kitchens. Anything non-stick that’s been used to cook gluten isn’t safe for gf due to gluten that can get stuck in scratches and whatnot. It’s a pain in the ass, yes, but even a cheap set will do. My BFF bought a set from IKEA the first time I visited after going gf (It was a skillet and 2 pots with lids) and it serves us well every time we visit. The same goes for any old plastic cooking utensils with scratches on them.

If you do gf and regular pasta, you will need a dedicated gf strainer if you use one to drain pasta. Gluten can stick in the holes and transfer to the gf pasta.

In the pantry, anything gf should be stored above gluten-full items. This is to prevent cross-contact should something bust open and get make a mess. If there are snacks that are gf that everyone eats (say a bag of chips), the best way to keep from having two of each is to make sure everyone POURS out a portion into a bowl instead of reaching their potentially gluten-full hands inside. Or you can pour some from the newly opened bag into a container for yourself and let the others go at the bag however they want. Unless they all make sure they wash their hands first (which I know with kids is a battle) it’s probably easier one of the other two ways. It’ll be hard to get used to, my extended family was frustrated at first when I wouldn’t let them reach into my snacks like I used to and instead poured stuff into their hands. Again, it’s better to be safe than sorry.

As far as the gluten eaters snacking in the house, I have a friend whose husband puts his food on old dinner trays to keep the crumbs contained and they can just wash the tray without tracking down crumbs.

If cooking a set of gf food and gluten-full food (say chili), make sure to use different utensils for both and do not mix them up. The same goes for if you are grilling and have gf stuff on one side. Most grills (if shared, will need a thorough cleaning between uses. I’ve had people grill my food first (on small grills) or line the grill (on big ones) with foil where my food will be cooked. Restaurants will do the same with the foil if they feel it is safer.

GLUTEN-FREE MEALS

Your best bet is to menu plan and make a shopping list. It can take getting used to if you don’t normally plan meals ahead of time. I have a system of planning on a whiteboard and then making my shopping list with it broken down into the following: protein, produce, dairy, packaged, and sometimes “non” when I need parchment paper, deodorant, etc. It makes it easier for me to double check that I have everything from one department before moving on to the next.

Another best bet is to not rely on gluten-free processed products. You can do healthier swaps with things like large leafy greens as wraps instead of bread or tortillas; spaghetti squash or zucchini (spiralized) in place of gluten-free pasta; grated cauliflower instead of small grains like rice, bulgar wheat, barley, etc.; mashed/pureed vegetables (cauliflower, rutabagas, turnips, parsnips, etc.) instead of mashed potatoes; nuts instead of potato chips. This is by no means telling you you must be healthier or can’t indulge. This is just a view into how some of us do gluten-free without breaking our wallets with the expensive bread, pasta, crackers, etc. every week.

Take your own snacks/food with you when running errands/traveling. While it is getting easier to find gf snacks on the run, until you get used to it, taking your own with you will be easier and less stressful.

Be vigilant about reading labels. Even though we have FDA regulations (that didn’t exist when I first went gf), they are inadequate and there are many items labeled gf that aren’t really gf. Also, do not rely on “certified gluten-free” seals on products. Some of the items found to have gluten containing ingredients listed are “certified” and when you learn about how some of the certifications are done and “overseen” you’ll understand – but that’s not for this post. I would highly recommend following Gluten-Free Watchdog on social media (Facebook and/or Twitter) and subscribing to her reports – it is a monthly fee that, if you can afford it, is completely worth it to have access to the information on product testing that she does. She will often post products on Facebook and Twitter that readers find that have gluten ingredients listed on something labeled gf.

EATING OUT

Many restaurants today have gluten-free menus or options for gf on their menus. It’s always best to let your server know that you are gf. There are items that should be cooked on a dedicated surface like waffles or (again) toast, or fryer for deep fried items. If those are on the menu, ask if they have a dedicated waffle iron or toaster or fryer for their gf item listed. If the answer is no, do not take the chance. There were many restaurants we went to on our road trip two years ago that I had to pass on before they didn’t have a dedicated waffle iron or toaster. These are the places I didn’t write about but I let them know that if they didn’t have those dedicated surfaces, they weren’t safe. Let me also mention here, that these were places we found on the app Find Me Gluten-Free. So many people were giving rave reviews of these places and it floored me that these are people with Celiac or NCGS who either didn’t ask or took the chance. While the app served me well for awhile, I stopped using it on that trip because it became unreliable simply because the reviewers weren’t doing due diligence when at the restaurant and the last straw was a place that, when we got there after a long morning/afternoon of driving, told me they could only serve me a gf bun.

Buffets and potlucks are iffy. If you’re at a potluck take a dish you know you can eat and ask about serving yourself first before serving utensils get dipped in gluten-full dishes. If possible, talk to the host beforehand and see if they are able to set up a separate table for only gf dishes (like salads, cold cuts, cheeses, etc.), that way you know off the bat and don’t have to guess while going through the line. Because at one time I had 13 different food allergies, which encompasses A LOT of different foods (no yeast meant nothing fermented or pickled, no condiments, no vinegar, etc.), I started taking my own meals with me whenever we go to someone else’s house. Also, I would have to know they used the same precautions, etc. that I take in my kitchen and I know that’s not always possible. Do not assume that everyone will cater to you or will do it right. It is frustrating, but not everyone gets it and ultimately, you are responsible for your health.

GETTING GLUTENED

Everyone with Celiac or NCGS recovers from a glutening differently. I rest as much as possible and drink lots of coconut water. Others use activated charcoal. There’s a lot you can do to feel better, but once glutened, it takes 6 months for it to stop affecting you internally whether you feel it or not. This fact is why it’s so important that even if you hear someone else say they didn’t have a reaction to something others are reacting to (like gf Cheerios or Domino’s gf pizza or Omission beer), that you consider it carefully. You will often hear, “Well, I’m really sensitive.” I don’t really buy into “sensitivity.” I think our bodies are all different, thus the different reactions. I used to react between 10-15 minutes after being glutened to several days later (it can take up to 72 hours for any food reaction to surface as symptoms). Now, I have what is called “silent reactions” where I don’t have symptoms but I know damage is being done internally. It doesn’t happen often where I know I’ve been glutened. The most recent was earlier this year when my grocer had poke in the seafood case and I asked if it contained anything with wheat in it and was told no. Bought it, took it home, ate one piece and then waited for Chaz so we could enjoy it together. He discovered the wheat listing on the container that I didn’t double check. Several months later, my nails were brittle and were breaking/splitting anytime time something hit them or they hit a surface.

For a good list of all the ways other bloggers recover after being glutened, please check out this post from gluten-free easily.

If this is the first thing you’re reading after being told you need to be gf, I realize it’s a lot. Like I said in the beginning, don’t panic. Bookmark this to come back to, take a deep breath, go have a cup of coffee (or tea, or cocoa, or glass of coke, juice, water), do some laundry, listen to some music and then come back. All of us who have been gf for a while have been the same place you are right now. It’s okay if you don’t remember everything, we all make mistakes. I even gave you an example of my most recent mistake. Don’t beat yourself up. The best thing you can do for yourself right now is to be kind. You didn’t get to this diagnosis overnight and it will take a while for your body to heal. You might pick up another autoimmune disorder or two, some food allergies, or another chronic illnesss – it’s actually normal for this to happen after decades of your body attacking itself and not having a proper diagnosis. It doesn’t sound great that it’s normal but there are many of us in the same boat or adjacent boats.

You are not alone.