Category Archives: wheat free

Test results update

I’ve completed recent tests and received all the results.

Neurology tells me my blood work is completely normal, which tested for myasthenia gravis and muscular distrophy. My EMG was “long and thorough” and normal. My first and follow-up physical exams were normal. In our follow-up appointment last night, the doctor finally admitted that he was looking for signs of MS–which he says he didn’t mention prior because he doesn’t like to frighten patients–but found none. After he said that, he said he could suggest a brain MRI, but found no symptoms to support getting one. I told him I’d had a brain MRI five years ago at an ER visit and that they found no signs of any issues (other than a schwannoma that was then “not found” at a follow-up appointment). He said if it was five years ago, and I was 40, that if I had MS, they would have seen signs of it already in the MRI. So that was even more reason to skip the MRI. His final words? Wait it out, see if any other symptoms come up, and go out about my life. He said I could try seeing a rheumatologist, but it seemed like a half-hearted suggestion.

I saw the allergist on Tuesday. He was very nice, listened to everything I had to say and asked questions. He told me up front he didn’t think the fatigue/exhaustion was related to allergies, but said it was worth finding out what kind of allergies I had going on. He didn’t seem to understand my wheat “allergy” and asked a lot of questions…including when I told him that I’d been gluten free for at least twelve years, he said “and you’ve never eaten just a bite of anything? not even cake or cookies?”


Would he say that to someone who had a reaction to peanuts in the past and thought they might have peanut allergies? “Not even a peanut butter cup? Not even half of one?” It was a little frustrating. I’m not sure if it was because I’m fat, or because he didn’t think the “allergy” I had was important enough? Either way, I just said, “No, it makes me feel incredibly horrible and I saw no reason to do that to myself on purpose when I knew what the cause was and it could be avoided.” He accepted that and moved on, but I suspect he didn’t really believe me. He tested me with the skin test, both a needle and a “scratch” test (not at the same time or in the same spot), including tests for wheat, rye, and barley. I had no reaction to any of the needle test–including zippo response on the wheat–but the scratch test (which is more “invasive”) popped “mildly” on dust mites. He did not test me for wheat on the scratch test… However, I will note, that when they did the scratch test version, within five minutes of them doing it, their “histamine” scratch area gave me the same response as what I get to eating wheat. My face started to get red and hot, as did my ear. When we went back so the nurse could read my results on my arm, we told the doctor, and all he said was “interesting.” But for me, it shows me that THAT response IS my histamine response, and points back to the wheat giving me a histamine reaction. In the end, he noted it as an “adverse reaction” to wheat reported by the patient. WhatEVER. I read that both skin and blood tests for allergies are only 60% accurate anyway.

I had my CT scan last Thursday. For the first time, I had terrible stomach issues after drinking the barium, which sucked. I made it to the radiology office, had more stomach issues, then had to stand and talk to the check-in person while she figured out what needed to be done. Then I had to go wait because they wanted to call my doctor’s office to confirm they didn’t REALLY need without contrast as that causes unneeded radiation in my particular case. When they finally got through to the doctor and recalled me to the check-in station, I was then informed that I had to pay for the CT Scan because I hadn’t met my deductible and that I had been notified ahead of time that I would put down a couple of hundred dollars in advance and follow-up the remainder payment later. I had been told no such thing…and I was PISSED and tired and felt like shit and I paid the advance because I needed the test and so what was I supposed to do? The woman doing the CT was SO NICE y’all. She really took care of me, was kind, and helped me work with my impinged shoulder. When we were done, I went back out to where my father was waiting for me in the car because I haven’t been driving myself due to my leg weakness and my imbalance and fatigue. The radiologist said my doctor would have my results by the next afternoon, but I heard nothing. I spent the weekend feeling mild terror, because when I was diagnosed with the cancer, my oncologist actually called me on a Sunday  night during dinner. It was like a little bit of PTSD to get through dinner Sunday night, but no phone call came. I finally found the results online at my oncologist’s portal on Tuesday, which said the scan was clean. Oddly, I never got any notification or update directly from the doctor, which was unusual for him.

Insurance bullshit
As it turns out, apparently the radiology center was correct and I had to pay my entire deductible for the scan because I have SHITTY-ASS INSURANCE (this is new insurance for us since May b/c Hub changed jobs). I’ve never had to pay anything for CT’s or x-rays or blood work when I go to a lab/radiology center. And I also see now having inspected the insurance more deeply that they don’t even cover 3D mammograms. And not only do I pay deductibles for all this shit, but I also have to pay 10% co-insurance. Let’s not forget that I have a huge deductible for out-of-network which means they aren’t even close to covering any of my sessions with T. I seriously thought that we had the most obnoxioiusly horrendous insurance until Hub got a job offer from someplace new and we found that they were offering something called an EPO, which would cost us $50 more a month than we’re paying now and offer us waaaaaay  less coverage. Apparently EPOs are the “new” thing that are essentially HMOs without needing referrals to see specialists, plus they have higher deductibles and cover fewer things. And insurance companies are suckering people in because they think the EPO is more like a PPO (higher level of coverage and out-of-network coverage) when in fact they are more like HMOs. So insurance companies are yet again screwing customers with lies and deceptions. Woo-hoo. Hub, in fact, turned down the job because of the health insurance and was then told the next day that he was the second “high profile” candidate in recent weeks to turn down positions because of the health insurance.

Primary care doctor
My last appointment with my PCP left me with the suggestion to go see a sleep doctor and/or the infectious disease doctor for chronic fatigue syndrome. She also told me she won’t write a note to the insurance company that indicates I have myofascial pain syndrome without me coming back in for yet another appointment–which will cost me even more money–so that insurance might consider covering some small portion of my trigger point therapy. (Neither would the neurologist, despite the fact that MPS is supposedly a neurology classified syndrome AND I was IN HIS OFFICE when I asked him.)

And so, here I am, in the same place with no plan forward. I am pushing myself to do more to see if I can just IGNORE the symptoms away. My imbalance is bad and I’m struggling to keep myself upright. I DID drive myself to PT on Monday, but it is literally five minutes from my house, on two roads that see minimal traffic. When I talked to my PT person, she said she had a client who was diagnosed with a virus who had horrible fatigue for over a year…but that after that she was fine.

I am burned out on doctors. I don’t know what I’m going to do now. Wake up, step forward, keep going. Try not to let my anxiety get the better of me as much as it has. Accomplish things when I can and celebrate when I do. Rest as needed.


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And so I fly… (part 1)

Spoiler alert: I made it home alive (and so did my husband).

Yeah, so the trip is over and I survived the flights both going and coming back. It was not fun either time and I hope to not fly again. Ever.

Our round trip was Sunday. On Friday night I started getting nervous. More about whether I was going to forget something or get to security and have to throw something away. But behind that, I was starting to get nervous about the flight itself. Hub isn’t a good flier either, so he was starting to get nervous, too. In some ways, that made me feel better because he doesn’t have anxiety and yet he was getting worried about the flight. Anyway, we left for the airport and parked our car in the daily lot, then grabbed the shuttle to the airport. We found the security line, which ended up taking almost an hour to get through. It was crazy ridiculous. I did what I was supposed to, including putting my liquids (mostly makeup) into a clear baggie and on the conveyor belt outside of my small bag. But guess what? After going through the xray doohickey, they stopped me and a female TSA agent said she was going to have to pat me down around my waist and my ankles. I actually thought nothing of it at the time, just let her do her thing, then grabbed my stuff and my shoes and went to where Hub was putting his shoes back on. We hurried along to find our gate, which seemed to be the last gate on that concourse, of course. Once we got there, we found seats and tried to stay occupied. We had about 45 minutes before boarding. I kept asking Hub if we needed to be in line for something because people kept lining up, but he said they were getting their seat assignments, which I had already done online when I booked the tickets. Also, I had checked in online (for both flights) the day before so it would save us some time and money.

They finally started boarding the flight. We were almost in the last group to board because our seats were in the back of the plane. I haven’t been on a plane in 17 years, so I forgot how small the aisles and seats are. And of course, I’ve got nicely padded hips…and our seats were in the back, so I had to pass alongside all the passengers already boarded. That kinda sucked. When we got to our seats, we found the person in the window seat was already there. Thank goodness he was a small guy, so I didn’t feel like I was smushed in between him and Hub, who is a big guy. We put up the arm rest between Hub and me, then I went to find my crochet in my bag. But I realized REALLY quickly that there was absolutely no elbow room to crochet. Ugh. I was really counting on that as part of my relaxation technique. So I swapped it for a book, then plugged in the headphones for my iPod and put the earphones over my ears. Were you aware that United uses their headrest tvs to show the safety video? It’s like a commercial and they tried to make it entertaining. Hub and I just rolled our eyes through the whole thing.

Lucky me, the little guy at the window seat kept his window shade open. So I pretty much had to crank my head toward Hub the whole flight. I clutched onto Hub as we took off, wrapping my arms around his arm so that I was pretty much attached to him. I did that almost every time I felt the plane bank, or there was turbulence, or we sped up or slowed down. I felt every single shift in the plane. Every single shift. I am so hyperaware of movement because of my vertigo and imbalance that I knew when the plane climbed higher or descended even a little. I tried to think of turbulence as pot holes, though that didn’t help very much (we had a good amount of turbulence as we ascended, then more during the length of the flight). I cranked my music and tried to sing along in my head. I tried to read but the book was terrible and I couldn’t concentrate. The woman in front of me put her seat back–of course–so I put my table tray down and just rested my head in my hand and my forehead against the back of her headrest (against the tv screen, technically). I had the little air blower from the ceiling on high, so that blew down the back of my neck and kept me relatively cool. I swayed my head to the music, tapped my fingers, and intermittently clutched at Hub as we flew. With the time zone change, I was having trouble tracking how long until we were supposed to land. At one point I was all happy because I thought we were going to start descending any minute, only to realize we had almost forty five minutes left. That was just less than half the flight. UGH. So back to the music I went, swaying and singing silently.

The pilot announced we were going to start descent, so of course I plastered myself to Hub, even though we still had twenty minutes before landing. I closed my eyes and just tried to ignore everything except the music I was blasting in my ears. The landing was hard and fast, and it felt like it took forever to slow down and stop. Everything was so loud…louder than I remembered from all those years ago. It took forever to get off the plane, because as I mentioned we were in the very back, just four rows from the bathrooms. It was interesting to watch the debarking process, because people were really patient and allowed other passengers to get off in order. All except ONE GUY who was sitting behind us who had jumped up as soon as he could, and instead of letting us out like he should, he pushed his way right up along our seats so Hub and I (and our seatmate) couldn’t get out in order like everyone else. SO RUDE, dude! I mean, really? How much faster were you going to get out by being an asshole?

Have you ever flown into O’Hare in Chicago? That mo’fo is HUGE. Walking to find the baggage area to get outside for pickup took forever. We used the moving sidewalks, too, but I was so tense on the plane and so squished into the seats that I was exhausted and in pain. It was kind of slow-going. But we had landed 30 minutes early (YES!) in comparison to the schedule, so we had some extra time to get outside. One of my brothers picked us up (along with some relatives coming in at the same time but via a different airline) and we were off to the hotel to meet my parents and change our clothes for the wedding.

Our flight out was an hour and forty minutes. The wedding itself, specifically, was thirty minutes long. Then we sat for ninety minutes in the reception room, as appetizers were circulated and the open bar, well, opened. I hadn’t eaten before flying (it was too early) and after we landed we went to the hotel. I had packed a tiny bag of gluten free cheese crackers, which I inhaled at the hotel (along with about six ounces of apple juice), but that was all I’d eaten all day. Unfortunately, every single appetizer was either breaded and fried, or had some sort of bread base (egg rolls, spanicopita, bruscetta), so I had nothing to eat again for those ninety minutes. I had two Shirley Temples and some water…and a few Hershey’s kisses that were on the table. That sucked. I was so hungry and I was getting a bad headache. Then the soup came out…but I can’t eat soup because it’s usually thickened with flour. But the waitress said they had some fruit, which she brought out for me and a few other people there who had allergies. That was some awesomely tasty fruit, ya’ll. 🙂 Then they served salad, which was good enough.

Luckily, my brother (it was my niece’s wedding) had arranged for a gluten free meal for me, which turned out to be pretty tasty. I was impressed because normally “gluten free” means plain and dry. But it was pretty okay, including a nice big baked potato, which I scarfed down like I was starving. They ended up bringing out chocolate mousse next, but I was too worried about being sick on the flight home that I didn’t eat it. Before we knew it, Hub and I were retrieving our bags from the car and changing back into our travel clothes in order to leave for the airport to fly home. When we went in to hurry around and say good bye, they were just serving the wedding cake (which I couldn’t eat anyway) along with what looked like ice cream or custard or something, and maybe some other small desserts. I’m not sure because we were already a few minutes behind schedule and it was more important to me to say good bye to my family than to see what we were missing dessert-wise. Then we were gone, on the road to heading home.


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Party on, Wayne

Tonight Hub and I are going to a party. I do not like parties. I’m a terrible introvert and incredibly shy. I also get embarrassed easily. I will probably spend the evening with my face in flames…partly from discomfort and embarrassment and partly because I overheat incredibly easily. Our house is like a freezer pretty much all year round, and no one else ever keeps their place cold enough.

Why, you ask, am I going to the party? No real choice, actually. Hub is working with a charity and we’re going to the party to try to raise funds for the charity. I’ve been helping him with some of the fundraising stuff (ideas and setup), but heaven help me if I have to TALK to anyone about the charity or the fundraising…or ask for money. I’m terrible at all of it. It isn’t that I get anxious about going to the party, I just don’t like parties. I don’t like mingling, I don’t like meeting new people, I don’t like making small-talk. On top of everything else, the party is during dinner-time (also, happy hour) at a restaurant. I have no idea if there will be any food I can eat safely…and since I don’t drink, the happy hour means pretty much nothing to me.

I’m going to take my new camera and take pictures. The person organizing the event asked people to take pictures to share afterward and I figured it’d be a good way for me to practice my camera skills. Also, if I’m taking pictures maybe no one will talk to me. AND taking pictures will give me something to do and something to hold in my hands.

Really, I have nothing else to talk about right now. Well, I probably do, but for some reason I don’t feel motivated to write.


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Finding happy

Had a session with T last week. Of course we talked about my mom and her cancer situation, as well as the situation with my dad and brother. And gently, but firmly, T reminded me that I am not my mother’s sentry. I want to protect her, but really she knows how to protect herself. I have to take a step back and offer her my support without trying to take over. I had already started doing that before my session with T, but she did reinforce that for me.

So among some other conversation, T and I talked about my relationship with food. I told her how I feel traumatized every time I take the digestive enzymes my nutritionist recommended for my heartburn and stomach issues. The enzymes seem to work (this past week not so much, but prior they were working REALLY well), but they remind me so much of all the “herbal” pills I had tried to buy and take growing up to lose weight. There’s a smell to them, and the look of them is not much better. And I can’t help but smell them every time I open the bottle. She suggested I put a cinnamon stick in the bottle and/or to inhale before I open the bottle so I can’t smell them. We talked about being mindful with my food, but truthfully–as I told her–I either think about it too much, or I think about thinking about it. Which sounds weird. So I’m not sure what direction to go, because I don’t want to obsess over food, but I don’t want to eat unmindfully. One of the problems I have is that I have to think about food constantly because of my gluten/wheat issues. I can’t go out anywhere without spending time thinking about where we’re going and will there be food for me and will I get sick afterward and will it be worth it. I can’t go to other people’s houses without thinking about it, or even randomly pick up a chocolate bar in the store. I can’t even randomly pick something out of my pantry or refrigerator without thinking about the ingredients because Hub is not gluten/wheat free. So I have to think about what I eat all the time.

T asked me to think back to a time when I felt like I wasn’t worrying about my weight or my body image. And there was a time, shortly after we moved into our house from the townhouse we first lived in together. I was deep into my writing and felt that I was a part of a larger group…and that I was touching people’s lives. So she asked me how I could get back there, but I told her I wasn’t likely to ever be in “that place” again, because it was years before I realized I had food sensitivities. Back then we didn’t think about or worry about gluten/wheat. I ate what I wanted to, when I wanted to, and in the amount I wanted to. Now I can’t do that with pretty much anything. I eat too much cheese, I get sick. I eat split pea soup, I get a stomach ache. I eat GF pretzels, it makes my stomach hurt. My favorite cheddar cheese potato chips? They leave sores on the inside of my mouth. Pineapple? Burns my lips. Fritos (which I love but actually can’t eat at all anymore) makes my lips burn, too. Spinach upsets my stomach. Chocolate upsets my heartburn. Tomato sauce upsets my heartburn. Popcorn gets stuck in my teeth and gives me toothaches (stupid delicious movie theater popcorn that I haven’t had in about ten years.) I avoid sugar substitutes, so a lot of foods are off limits because I can’t take the sugar substitutes in them. I literally never pick anything up at the grocery store without reading the ingredients and searching for items on my no-no list. I’ll never be able to just eat what I want to eat. I’ll never not have to think about it. And it sucks, because it makes food an obsession of sorts for me, which is one of the last things I need.

And I miss writing. I know that I’m writing here, and I hope that I’m touching people’s lives…but I miss the writing that I loved so much. I miss being buried in those words, in my characters, in the worlds that I created. But I can’t seem to find my way back there. I can’t seem to be in that place anymore. And that hurts me, too, because that was a happy, comforting place to be. It made me feel like I was doing something good, offering something to people, and I felt fulfilled. I want that again, too.


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What’s broken?

I start my post with this statement: I love my husband. A lot. This is not in question.

Okay, we got that out of the way, right? So now for the rant.

Hub and I went out to dinner tonight, which is a rare thing for us because of my wheat/gluten issues. There are a few restaurants we still go to, most of which offer gluten free options that I can pick from. Pretty much 90% of those places will end up offering you a plate of food without any seasoning, gravy, sauce…flavor. The food is plain and bland. I find it offensive to go out and pay for food like that, so my preference is to stay home. The only place I go to that does not specifically offer gluten free options is a local BBQ joint that has beef ribs on the menu. I’m a sucker for beef ribs. I try to eat the same thing every time I go there, and I always end up getting flushed and uncomfortable, but it’s manageable. I don’t even tell Hub that I’m getting a reaction, because he is so happy there is a place for me to eat beef ribs, I can’t spoil it for him.

That was totally a tangent. So we went to dinner, made a stop after dinner, then we were in the car heading home. Among conversation, up came the topic of my therapy. Not PT, but my mental health therapy. And I said to him, “Do you see a difference in me?”

Dead fucking silence. We have been through this conversation before, but this time I didn’t let him out of it so easily. I said, “Seriously, you don’t notice any difference in me?” His comment was, “I thought you said you didn’t think she was helping you that much.”

Seriously, after telling him I’d never said that, I clamped my mouth shut and stared out the window. And I brooded. Hard. When we got home, we went about our evening routine and I said nothing to him. I got into the shower and I was really thinking about it. And I came to a realization…

He thinks that me being in therapy should fix the things he thinks are wrong with me. (I couldn’t even figure out how to emphasize that statement properly!)

I know that Hub thinks I get angry too quickly sometimes, and that I am hard on him. He thinks that I am unable to compromise. He thinks that I should be equally as affectionate as he is and accept every bit of affection he gives me at every time he wants to give it to me, in every way he wants to give it to me***. (Again, this isn’t about complaining about my husband or our relationship, I’m just going over some of his complaints about me.) He thinks that I attack him about money. He thinks I nag him about things that need to be done. I’m sure there’s more and if I sat long enough I would come up with all of it. That isn’t really the issue here. The issue is, he figured that my going to therapy would fix what he perceives are the problems I have. In fact, a lot of those problems stem from his reactions to me. I used the word “perceived” because both he and I are well aware that he has overly sensitive reactions to a lot of things I say and do. He will admit to this quite readily, but he has decided that he does not want to see a therapist and/or work on those issues in any way. That doesn’t make me happy, but I can’t force him to do something he doesn’t want to do…all I can do is work on myself. So while I’m working on myself and the things I can do better (and be better), his responses to me and his perceptions have not changed. So he perceives this as me not changing.

See how that works?

I’m so disappointed. I don’t even know how to address this with him, or what to say. I’m disappointed that he sees none of the changes or progress I’m making. I can’t make him see it, and I can’t fix his perceptions. So I’m stuck feeling like he’s looking at me like I’m standing still, in the same place I was prior to starting therapy (intensely) in January 2013. I feel like I’ve made a ton of progress…my therapist has said similar things. And yet the person I live with every day, who loves me to no end, sees none of it because of the “colored” glasses he wears. It makes me want to cry.

Up to this point, I have not once resented the fact that I’ve spent so much time trying to feel better…that I’ve worked hard to deal with my anxiety, my fears, my grief, my guilt, control issues…and that he’s not done one thing to help himself. I’ve focused on what I can do, which is make myself better. Now? I am resentful and hurt. And I feel lost. And angry.

I will work to remind myself that I can only make changes in myself. And remind myself that I love my husband and he loves me. Even if he doesn’t see the changes I’ve made, he still loves me…and although to some extent that makes me sad, it also tells me exactly how much he loves me.

***For example, I ate something that gave me that gluten’d feeling. I was getting the chills that no amount of blankets could fix, but my face was hot as a boiled lobster. My nose was running like it was allergy season, I was jittery like I’d had ten Red Bulls (which I don’t even drink), and I felt crappier than crap. This happened when I was having a snack while the two of us were watching a movie at home. After said movie, Hub ran off to do an errand, and when he came home I was outside with the dogs, huddled in my winter coat in 40 degree weather with 15-20mph winds. I thought the brisk weather would make me feel better and/or distract me. Hub came back home and saw me outside and came to the fence to ask me what was going on. I told him what I said above, specifically, and said I wished I could crawl into bed and sleep for 24 hours straight. He said, “I’m sorry, dear.” Then he leaned over the fence and said, “Can I have a kiss?” I guess I gave him a dead-faced look because he sort of grimaced. I said, “Really, did you not just hear how shitty I feel right now?” And he apologized and said he didn’t really think about it before asking. W.T.F. people? THIS is the kind of thing I mean…he doesn’t really consider circumstances when “asking for” or offering affection. (I know I shouldn’t complain about this, but he has absolutely no clue about surrounding circumstances or my feelings when he wants affection and that gets really difficult to deal with after 22 years.)

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Really, I’m a 90-year-old woman

I’d like to introduce you to me–today–as the real 90-year-old-woman I am. Every single bone in my body is telling me that I am actually 90 years old. It all hurts…pretty much every single joint. It’s been getting worse over the last couple of weeks. I’m not sure what happened, but I’ve been heading downhill in terms of pain and ability to move without said pain. The newest place is my hips. Originally, it was only my left hip, but now both hurt…along with both knees, my back, my arms, and my finger joints.

It suuuuuuuucks. I’ve just spent the past half hour crying on and off. I’m frustrated and I’m tired. I haven’t been able to sleep because I can’t get comfortable, which of course makes everything worse when you are sleep-deprived. And I know I’ve written about this before, but today…right now, it’s worse than it has been in years. I am literally shuffling around to move. I considered borrowing a walker from my parents’ house, but I don’t want them to know how badly I am feeling.

I have PT today. I’m not sure how I’m going to make it through. I don’t want to burst into tears in the PT office. I’ve already done that twice here at home.


So I went to PT and talked to E (my physical therapist) about the pain in my hips. I told her how much pain I was in, and that I was feeling like this must be some kind of systemic flare. But that at that moment, I was having so much pain in my hips, so could she check it out. She checked my back first and found I was out of alignment in several places, so she did some adjustments. Then she found my ribs on one side were not moving the same as the other side, so she tried to do an adjustment there. When she was done with that, she started checking out where the pain in my hip was coming from. Fortunately, or unfortunately, she found that the pain wasn’t coming from my hip, it was coming from my back and butt. And as soon as she started working on the trigger points, I remembered… We’d been through this before, last spring, when I was having back issues. She found some holy-hell trigger points on my glutes that made me cry it hurt so much. Rinse and repeat. I was nearly in tears, clutching the bed I was laying on as she worked on the trigger points again.

Good news is, since I’ve been home, I’ve been up and down out of my recliner and the hip area hasn’t hurt. So clearly she found the problem, but damn that hurt. I’m going back later in the week to have her work on it again, but she reminded me of the exercises I need to do to keep the areas stretched and loose.

This doesn’t address my arms or my knees, but if I’m having trigger point flares in my glutes, it stands to reason I’m probably having flares all over. Which blows chunks. I’m trying to eat more anti-inflammatory foods (made a pineapple-walnut smoothie with greek yogurt this afternoon which rocked the casbah), so maybe that will help, too.

I wish I could go to E every week forever. Insurance tells me otherwise, unfortunately. Last year our insurance had no max on the visits, but we changed plans this year and now I have a cap. Fucking sucks, that’s for sure.


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Not again!

It’s been over 4 years since I discovered that I have a wheat allergy. I discovered this after months and months of symptoms, without any assistance from any doctor. They all thought I was nuts, that there was nothing wrong with me, and that the symptoms I had were a figment of my imagination. No doctor helped me, despite me begging with several to figure out what was wrong with me.

At the time I was eating a lot of wheat products (cous cous especially), and my reaction was what I considered histamine related. I later figured out on my own that I would eat something with wheat, and within five to ten minutes, sometimes sooner and sometimes a tad later, my face would begin to burn and turn bright red. My ears would burn so hot that they would turn purple. I would get very agitated and wired, like I was getting an adrenaline rush. At the time, because I had no clue, I would sit with cold packs on my face for hours trying to get the heat to dissipate. I was frustrated and scared that there was something wrong with me that the doctors couldn’t find. Sound familiar? One day I was eating lunch–which consisted of cous cous (which are basically little teeny tiny balls of wheat) and cheese, and cottage cheese–and as I was coming to the end of the bowl I felt my face burning. And it struck me that I had been eating cous cous a lot, and that the majority of my reactions were after I’d eaten lunch or dinner (I never eat breakfast). But because the reaction would sometimes happen later in the evening, I didn’t attribute it to food. And because I had no allergies, the “histamine” part of the reaction was foreign to me.

On my own, after my own research about gluten and celiac issues, I abruptly cut out wheat from my diet. Unfortunately, when I say abruptly, I mean I attempted to cut out all wheat from my diet. It took me a very long time to realize that there was wheat hidden in all kinds of things I didn’t know about, so I continued to have reactions at times without knowing why. But once I learned, I began feeling better. I always knew when I’d accidentally eaten wheat because I would start to get a burning face and feel really agitated. If we were out to dinner, I would start twisting and turning in my seat, or I’d be repeatedly adjusting my position in my car seat. It is very uncomfortable and quite discomforting. We’ve stopped eating out unless it is somewhere that offers a gluten-free menu, or I stick to things that are plainly cooked, no sauce, and I skip the bread products. So in essence, we eat out fairly rarely, and when we do we go to the same places. I don’t eat at other people’s houses if I can help it, with the exception of my parents’ house. If I have to go to a function, I stick to raw vegetables and/or plain turkey or roast beef (like deli meat if there is a tray), or cheese slices on a deli platter.

So the “not again!” part is that last night I did something stupid. I was out at Wegman’s and I picked up a rotisserie chicken for dinner. I checked it online and although there was no wheat in the ingredients, there was an allergy warning saying there could be cross contamination to wheat, nuts, tree nuts, shellfish, etc. But every time I eat out there is a chance of contamination. So I took the risk. And last night I believe I suffered for it, because my face was burning and my ears were so so hot. I had to drag out the old ice pack and sit with it for about an hour. But I figured it was my mistake. I had a moment of weakness and I suffered for it. Sucks that it was over a stupid rotisserie chicken that wasn’t even all that great. I mean, if it had been a chicken-fried steak, that almost would have been worth the aftermath. Maybe an Outback bloomin’ onion… <drool>. ANYWAY, so I figured I did it to myself, and I would know better. But tonight, after dinner, my face started getting hot. But I had nothing unusual for dinner. I’m very confused.

And as my face started burning, I wanted to cry. I’m not sure I can make my way through this allergy situation again. The only thing I had in common from last night to tonight was potatoes (if it wasn’t the chicken last night). But I had potato chips with lunch and had no issue. So WTF? W.T.F. ?? Figuring out the allergy the first time was a pain, but at least I was able to single something out fairly easily (once I realized it was an allergy reaction). If I have to start eliminating food again, I’m going to go nuts. I have such a dysfunctional relationship with food as it is, putting myself on an elimination diet could send me spiraling into a direction that would be really bad for me.

Right now my face is not too hot and it’s been just over an hour since it started. And I haven’t had to use an ice pack, so maybe I was just too warm after dinner (even tho I felt chilly). And I didn’t end up with the burning ear or the chills or the agitation…so maybe it was an anxious reaction? I don’t know. But I guess I have to start paying attention again. *sigh*


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Forever without wheat

I don’t think I’ve talked about this specifically, but I’ve been wheat free for over three and half years.

I was having some odd issues where my face would get very flushed and hot, so hot that it would turn beet red and I’d have to hold ice-packs up to my face to cool down. My ears would get so red they would turn purple. I would get agitated and jittery, uncomfortable, wired like I was on no-doze (or I assume, since I’ve never taken it). I thought that this was happening randomly, and my first inclination was to see my gyno because it sounded like a hot flash to me. But my gyno felt I was too young (38ish) and my blood work didn’t scream hormonal imbalance, so they ruled it out.

One day, I was sitting down to lunch. I was having cous cous–which I love–with melted cheese and cottage cheese on the side. This was a normal lunch for me. I’d make a big thing of cous cous at the beginning of the week, then eat it for lunch because it was easy to reheat and tasty. So I was sitting there eating, and within about twenty minutes, I realize my face is getting hot. And as I looked back, I realized I’d been eating a lot of cous cous–which is all wheat–and that my hot flashes seemed to be happening after I had eaten. Sometimes it would be while I was eating, sometimes it would be within an hour of eating.

I immediately stopped eating things with wheat in it. Lo and behold, the hot flashes began tapering off. But not completely, which had me disappointed and confused. So I began researching wheat free and gluten free diets…and I realized I’d probably been eating things with hidden wheat in them. And likely every time we ate out, I was eating wheat in things I didn’t think had wheat in them. I got serious about going wheat free by limiting the things I was eating to things that were entirely free of wheat. In some instances, I would buy gluten free items because even though I didn’t think I had a gluten issue, it was easier to feel confident that I was buying things without wheat when they said “gluten free.”

The more consistently I was able to stay wheat free, the less I was having what I considered to be an allergic (histamine) reaction.

And not one doctor believed me.

To this day, I’ve yet to have a doctor believe me when I tell them this story. They tell me the reactions I had did not link up with wheat or gluten intolerance. No stomach issues, no skin issues, no “proper” gluten intolerance. And I try to explain again that we’re talking about histamine which means the reactions are more allergy than intolerance…and I get a blank stare. At one of my most recent visits with my primary, she said, “I’ll go ahead and test you for celiac, just so it’s on your record.” I tried to tell her I’ve been wheat/gluten free for 3 1/2 years, so there won’t be any antibodies in my system to show up on the test. Blank stare. “I’ll request the test” was all she would say. I didn’t ask for it, I knew it was a waste, but she did it anyway. It came back negative. What a surprise.

Eating out with gluten issues is a pain in the ass. If you can find a place that even offers a gluten free menu, or gluten free options, they are…plain. No sauces, no spices, no flavor. Sure, order the chicken entree, but expect it to come grilled without anything added to it. Veggies? No problem, but ask for them without the butter sauce. Rice? Plain. Potato, baked. No gravy, ever, when you are out to eat. Sadly, some spices have a wheat base to it and it’s doubtful the restaurant even knows…so don’t bother to ask. Want something fried? Nope…because it will always be fried in a fryer that has had batter in it. That almost always means no french fries. Are you one of those people who love them some appetizers? I do. Enh, nope, thanks for playing! Appetizers are generally almost always fried in some way, and that means either breading or the dreaded shared fryer. Chinese food fan? This is the end, my friend. Everything has wheat in it, or it has soy sauce in (or on) it, and soy sauce always has wheat in it (unless it’s special no wheat soy sauce…and in general chinese restaurants won’t have that). Teriyaki sauce is made with soy, which has wheat. Watch out, even some BBQ sauces have wheat or soy.

We’ve found a small grouping of restaurants where I can go and get food on a gluten free menu. The majority of them are as described above… plain food, no sauces, no flavor. It’s disappointing and frustrating. For a very long time I didn’t bother to eat out at all, which is a big change for me. We used to eat out all the time. I still have envy issues that my hub goes out for lunch pretty often and I don’t get to. But luckily we’ve found ways and places where I will go out to eat. A local Italian restaurant offers a gluten free menu that has a couple of things I will eat. Our local PF Chang’s has a gluten free menu and there are a couple of items I will order when I have a craving for Chinese food (it’s as close as I can get unless I attempt to make it at home). We found a completely gluten free restaurant in a nearby city that we tried…which was interesting but not great. We can go to Outback steakhouse, but I can’t have my beloved bloomin’ onion (waaaah). We can go to our local diner, but I’m careful to order a plain steak, which is so damn boring. I guess that’s my end result of eating out…most of the time it’s boring. I go when it’s an occasion, and expect that it’s just going to be blah.

Recently, a friend came to us and said, “A relative is going gluten free on doctor’s orders…can you give us any suggestions?”

In the 3+ years I’ve been gluten free, things have changed dramatically. More companies are making and advertising their foods (in the grocery store) as gluten free. Baking flour is being made with gluten free mixes. We’ve found fresh pasta and real (“fresh” vs frozen) gluten free bread. The grocery stores went from tiny gluten free sections, to expanded sections, to integrating gluten free foods in with everything else as if they were “normal” foods. It used to be we went to a local small-time organic hippie grocery store (read: expensive) to find gluten free items…now we can go to the regular grocery and find almost everything there in some capacity.

As I was telling the friend about the options, I realized how much more is available for gluten free people. It’s not spectacular, but in comparison to just three years ago, it’s a lot better. And on top of that, we are just as likely to try making things on our own here with gluten free ingredients…we try things on our own more often than we used to. Some successful, some not. But hey, we’ve fried chicken and chicken nuggets. I’ve made sweet and sour chicken (fried with corn starch and also fried with gluten free breading), and we tried to make the fried beef but that was only okay. You win some, you lose some. We continue to learn and find new items and recipes to try. It does mean that we have to do more work on our own and when we’re tired and don’t want to cook? We have less options…but so far we’re surviving.

*If you are going gluten free or wheat free, always always always read every single label before you buy or eat something. Just in the past two weeks, I was out and saw an individually packed Twizzler. I thought, woo, that’d be fun to chew on. Picked it up and idly looked at the ingredients… wheat. What the fuck? Wheat in a Twizzler? Goes to show, you have to read everything and you cannot trust any restaurant that doesn’t have an allergen menu specifically indicating wheat in their ingredients…otherwise you are taking a chance of getting gluten’d (or wheat’d).


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