Bloody Lymey

A Blog About Living with Lyme Disease

Gluten Free Craze

So I saw a meme on facebook today, a surly supposition about the gluten free craze and how it’s all in people’s head, having a gluten sensitivity.

Why am I writing this in a Lyme Blog?  Ohhhhhhhhhh, because!  Because we Lymies always find something on our own that makes us feel better, and many of us claim going gluten-free as a part of our success.    And sometimes it works for a little while , only a little while.  To that I say, do whatever makes you feel good TODAY.  So what if you don’t really have Celiac?  Can’t you feel better without gluten ?  Maybe, maybe not.

Once I felt SO much better after taking B-vitamins. I was in a month-long remission. It was bliss.  I hadn’t felt that good in YEARS.  I felt GREAT (read that as “GREAT” with infinite exclamation points.   Great is not the word!)  Then the feeling ebbed.  I couldn’t get it back.  I tried to think of what I ate that month, thinking perhaps it was B-vitamins coupled with something.  Maybe I had eaten more fatty acids in my diet, maybe more tomatoes each week gave me a spike in vitamin c?  I couldn’t figure it out.    I tried to figure out what happened.  I was exhausted and weak again.   I lived in a second floor apartment and I cannot begin to tell you how awful it suddenly was to just get down to my car and back up again if I forgot something .

So why do people care if people think gluten free is working for them?  Or B-Vitamins.  Or anything.  No one really scoffed in the ’80’s and ’90’s during the fat free craze — even the people who made no distinction between saturated and unsaturated fats and started to suffer from dry skin and hay-like hair.

I myself feel better when I’m off of “gluten.”  Maybe I feel better when I’ve abstained from something else – yeast?  Sugars?  I don’t know.  Maybe it’s incidental.  Maybe it’s not.

My bowels function better when I’m gluten free.  Do I adhere to a gluten free diet?  F**k no!  Ha, ha.  Not today.  Today I value my right to eat pizza and cake more than my doughy gut, my unpredictable bowels, etc.  But when the pain is great enough, I’ll try again.  I do also feel my BEST when I am 100% carb free, such as cycle 1 on the 17-day diet.  I think this may have to do with chronic candida.  I think antibiotics wreaked havoc on my gut bacteria and there  may be a permanent power struggle between everyone in there.

As an aside, there are people who DO think going gluten free is best for we Lymies, and that Celiac tests are open to debate.  Here’s an interesting article:



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Poppin’ Fresh Dough

I have been feeling fine.  Really.  REALLY fine since January.  Yes.  8 months now.

This is the 2nd longest stretch of feeling well.  The 3rd longest would probably be a distant third and measured merely in days.

Buuuuuuuuuut.  The nagging thing is my gut.  Unzipping my pants is like pulling the label off a can of Poppin’ Fresh dough.  You know how the dough pops and busts out of the crevice you created?  Yeah.  That’s what an unzip does.    And my abdomen is mushy and doughy.

I could stand to eat less, yes.  And I quit smoking in January, so this has been an uphill battle.  But when I lay off the gluten I tend to be okay.  And I’m even more okay if I lay off the sugar. In fact? If I do the 17-Day diet with its abstinence of carbs altogether I lose 10 lbs almost instantly.

But I can’t seem to adhere to that right now, and that’s okay. I went into Macy’s waving my white flag, looking for a size up.  I cried Uncle.

I’m not alone.

A LLMD claims all his/her patients have “Celiac Disease.”

If you consult Mr. Google, surely you will see that all lymies have “gluten intolerance.”

My doughiness disappears when I lay off the gluten.  My bowel habits become more predictable.    I enjoy heightened levels of energy (imagine!).  I don’t have those glycemic crashes where I eat some pasta and then nap dreamlessly for two hours.

Oh, I know what I have to do.   But I’m not doing it.  Freakin’ pizza is more important.

Well…………… that’s the truth.  But you know what I tell myself?  It’s EASIER to get gluten on the run.  Drive-ups offer salads, yes, but you cannot eat and drive with that. You can feel your way around a wrapper and bite into a greasy cheeseburg while you drive in good conscience.  They say when you rationalize, you tell yourself rational lies.  And here I am telling myself that a lot of my lunch breaks are on the fly and it’s unavoidable.

This is a good article about why it may be helpful to lay off the gluten – whether you’re a believer or not. It gets into the incidentals and the allegations and the what-have-yous.

Feel well, my friends.

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How Do I Do This Again?

I haven’t written anything in a while because, frankly, I’ve been feeling great — and living a life proportionate to feeling great.

Just three days ago I was in Boston walking the Freedom Trail.  There were steep hills and steps and I walked and walked.  The sun beat down on me, I took pictures, and I cherished every minute of it.

On the drive home,  my hands ached.  I thought maybe I was gripping the wheel too hard in the thick traffic on the Mass Pike.  I mindfully loosened my grip.  The aching continued.  It increased.  As we climbed the highest point on I-90 East of the Dakotas, my hands were killing me.  I did my trick:  extended my arms to brace myself with my elbows and palm the steering wheel.  This is great for long-distance, straightaways.  Not so great for city driving or lots of turns.

Climbing out of the car, my knees were creaky.  My hands were killing me.  The temperature in Boston was well into the 70’s with no breeze – just the warm sun.  At home?  It was nighttime and it was settling into the 40’s and smelling of frost.  I thought it was as simple as an extreme weather change in a very short time.

Now in three days, it feels like gravity is oppressing my limbs. It feels like my arms and legs weigh hundreds of pounds and I can’t sleep enough.  My joints are killing me.  The sore throat I woke up with after the day in Boston gave me hope that perhaps it is an arrival of the flu or something …….. something blissfully temporary.  But the sore throat has receded and here I am feeling lymey.

I had been abstinent from wheat and thriving.  I know in Boston we went out to eat.  I wanted a HOT meal and that ruled out salad, the only thing I could eat that was wheatless.  Everything else was a sandwich, pizza, or some other verboten thing.   I had pizza.  Could it be as simple as that?

I had pizza on my son’s birthday party without much incident.  Could it be that this pizza had more wheat or more gluten or more something?  It was very very thin …… less dough than what I had two weeks ago.

But Friday we went to a concert and underestimated how long it would take to get there.  For dinner I munched Dorito’s and a dark chocolate bar sold in the concession stand.  Thought I was playing it safe, avoiding pretzels and other gluten-gimmes.

My doctor hasn’t called yet about whether or not I have Celiac — – and I haven’t called. I keep forgetting.  I think deep inside I don’t want to know.  If I don’t have it, then there’s Lyme Disease.  Period.  Nearly everything else has been ruled out [again].  If I DO have Celiac Disease then……. no more “social eating.”  No more birthday cake.  No more cheese & crackers at a party.  No more pizza.  No more lasagna with curly layers of noodles.  No more fettuccine Alfredo.  And frankly?  Scrutinizing ingredients for hidden sources of gluten is not as easy as I had once thought.  Flour is a thickening agent in soups, gravies, salad dressings …… it serves as an anti-caking source in spices.  It prevents ice cream from crystallizing.  It’s everywhere.   Sometimes all there is to eat in a restaurant or when out of town is f**king SALAD.  And then you probably better ask for oil & vinegar with it because …… who the hell knows?

So here I am.  Somehow when this is my everyday life, I get acclimated to it.  I intuitively back down the stairs to spare my knees the agony, and the threat of falling on my face.  I get used to feeling like I’m constantly grinding gears in a stick-shift — ’cause that’s how my knees feel when I walk.  Crrrrrrrrch.  I get used to being tired and don’t feel like thinking is such a struggle.  The pain is always there and I sort of forget about it.  With this newness I’m acutely aware of all of this shit again.

Remind me:  How do I do this again?


The Diagnostic World Continues — Celiac Disease

I spoke with my doctor about the results of my CAT scan and they were normal.  No blood clot.  Yay.

I reiterated — as I sometimes HAVE to do — about the magnificent bloating, remedied by the 17-Day Diet.  I pointed out that my “IBS” symptoms are under control now.  I told her again that it is an elimination diet, but that I had buckled and eaten pizza this weekend with bad results.

Humorous story:  my boyfriend’s grandson’s birthday party was last weekend and they had pizza.  I had two pieces.  The kind that are cut in squares.  Small.  After the second piece, I had that derailed locomotive feeling barrel-assing through my intestines.  They had an outdoor party, but everyone came inside due to rain.  The apartment was teeming with family members, friends and their kids.  The bathroom is central.  Very central.  I clenched my butt,  trying so hard not to succumb to my digestive system’s awful impulse.  The sun came out and it was almost time for cake.  I wanted to yell, “Wow!!! Look how NICE it is OUTSIDE!!!”

Due to the outdoor stuff being wet, they had the singing and candle-blowing on the porch.  I went into the bathroom.  I couldn’t do it.  Not enough time.  I briskly walked out.   I finally made it to the bathroom during the presents-opening which came blessedly soon.  Armed with air freshener, I had a hit and run with my diarrhea.  Don’t ask me how I made it .  I don’t know.  But rest assured, my friends!  It was a pressing issue!

I told the doctor about the instantaneous diarrhea and the subsequent bloating and fatigue.  I asked her if food sensitivities can cause nerve pain and joint pain and fatigue……. she admits it does.  She discussed elimination diets and how the key is to implement things eliminated ONE at a time to discover what I’m sensitive to, and suggested a “food diary.”  She asked if Celiac runs in my family. I told her no.

After getting off the phone, I realized I should have mentioned how my mother is on this same diet and doing fabulously and my father is on a gluten-free diet and has lost tons of weight and has more energy than I recall his having in years.  More strangely:  they’ve been divorced for 32 years and do not talk.  The fact that BOTH are doing this sort of thing is peculiar.  Maybe there’s something undiagnosed?  Even just one of them.

She asked if I wanted a Celiac test, cautioning me that there aren’t really other reliable blood tests for allergies.

So I had my blood drawn on Tuesday.  Arriving at work with another lab bandage – the white square of gauze with medical tape-, a coworker asked me what they had done now. I told her Celiac and she cringed.  I told her I sort of hoped it was positive.

“NO WHEAT?  Never?!”  She asked incredulously.

I told her how abstinence from a certain food would be easy.  These ups and downs with “Lyme” are not.  I told her Celiac would be more “treatable” and that cycles of not feeling well would be at least somewhat  easier to predict, avoid, etc.  She nodded sympathetically, but I really don’t think anyone could understand that if they don’t feel it.

I think you have to feel the disappointment in waking up tired and in pain after weeks or even days of feeling well.  The longer you feel better, the more bitter the disappointment.  Likewise, the shorter the duration, the more cheated one can feel.  I think you have to feel the balloon in your soul quickly deflate when you’ve finished a course of treatment and think you’re “fine now” only to become crippled and exhausted again.  I think you have to walk a mile enthusiastically in my shoes because you couldn’t walk that mile last week ——- with that wonder in the back of your head, wondering if you should actually enjoy this because it won’t last. I think you have to sleep on the couch for a night because you couldn’t get upstairs to your bed.  I think you have to fall asleep exhausted and wake up in the same state, wondering why you even bother trying to take a nap when it brings no relief.  I think you have to feel like your body is being impaled from within, impaled with scorching iron fireplace pokers with an electrical charge to fully understand the magnificence of the pain — an acute pain that would make you faint were it not so sporadic. I think you have to have your cupboard filled with supplements and buy JUST one more because you think “this might work this time.  This might help.”    I think you have to lumber down the aisles of the pharmacy looking for a new over the counter pain med because the last one stopped working; you have to decide whether or not to replace Motrin with Aleve or Tylenol, wondering if enough time has spanned since the last time that one stopped working.

So do I hope I have Celiac?  Yeah.  Yeah I do.  And I don’t want to be disrespectful to people with Celiac.  If you’re reading this and you have it, then wasn’t it easier to contend with once it had a name and a protocol?  I don’t necessarily WANT to forego birthday cake, pizza, cereal, and other favorites.  I don’t necessarily WANT to go to a party and find there’s nothing at all that I can eat.  I don’t WANT to go to a party to find that all I can eat is the celery and carrots on the veggie tray.  I don’t want to be invited to dinner at someone’s house and find that they are serving lasagna and nothing more.  That must be terribly awkward — and is it polite to ask someone what they’re having if you’re invited to dinner at their house?  Sure if it’s a friend or family member, then that’s cool.  What if it’s your spouse’s boss?  What if you’re going to meet your boyfriend or girlfriend’s parents for the first time and they invited you to dinner?  So I respect how hard it must be.  I imagine I would respect it a lot more if I had to avoid gluten and I would respect it a lot more if I had years of experience doing just that.

I just don’t want to feel like this anymore.  And I’m continuing to hope against hope that perhaps there is something I can do about this.  I think I’m also hoping for some validation from the medical community that I may never get.

I mean, “Chronic Lyme” does not exist, right?

I am slowly becoming prepared for how hard it must be to have Celiac Disease.  The other night was my boyfriend’s and my anniversary and we went out to dinner.  I ordered one of the few dinners there that did not involve pasta — and I don’t like fish, so that narrowed the choices as well.  There were three things I could pick from.

The waitress brought us a basket of bread – warm bread – and it smelled nice and tempting but I remembered what had happened after I ate pizza – whether it was gluten intolerance or a coincidence.  That squashed the lamentations about not being able to have bread.  Next, came my salad.  Covered in croutons. I picked them off and put them on a plate, brushed their crumbs off of the top as best I could.  After finishing the salad came a BIG stomach cramp.  Trying to maintain my composure, I pressed my stomach under the napkin on my lap and tried to keep a poker face.  My eyes kept bulging and my boyfriend asked what was wrong. I told him it was a magnificent cramp.  Gas maybe?

Please no diarrhea here!

I hoped it wasn’t the croutons.  Could I be THAT sensitive?  Or is this something else? If it’s not the croutons/wheat then what now?

My dinner was Chicken Marsala with potatoes and “fresh vegetables in season.”  I was now fearing that maybe they would thicken the sauce with flour like I usually always did with my gravies and things.  Dinner was good.  No aftermath.  The fleeting cramp was threatening, but nothing came of it.

Last night we went out for ice cream.  After my wheat-free week, this seemed like a reward.  Looking at the list of  flavors, “Cookies and Cream” sprang to mind.  Nope.  Nope.  Can’t do that.

Uhh…….. Can’t have a cone.  Have to have it in Styrofoam .

The ice cream joint, ever progressive, offered “gluten free” cones.  Jim pointed this out to me, but I had read a little about Celiac and a great site suggested steering clear of substitutes at first.  The rationale is that the digestive system has some healing to do and it’s best treated with “fresh foods.”  I have chosen to adhere to that.

Whether or not I actually have Celiac, there is something wrong that appears to be tied in to food.  I so want to know what it is.

Prior to my test, I asked friends with it about what I need to do for the test.  One (a nurse) said that they measure enzymes and that the enzymes are present when someone eats gluten.  She told me that I should not abstain from it.   So? I ordered a BIG calzone from our local pizza place.   Having worked there years ago, I recalled their enormous bags of wholesale flour that read “High Gluten Flour.”  I hoped they still used it.  The calzone was delicious.  My stomach violently rumbled before I was finished, and after swallowing the last bite I had diarrhea.  It wasn’t worth it.  But, if I test positive, then this was a good last hurrah.

As someone who is in A.A., they tell me  to remember “my last drink.”  [To people who can drink socially, “drink” does not mean the last drink in literal terms — not our last martini, our last beer, or our last sip of aftershave because we had no booze in the house …… it’s to remember the last stretch of drinking, our last binge, our last evening drinking, whatever the case may be.  The intent is not to remember what it tasted like or to tempt us; it’s to remember the consequences.  In the end of an alcoholic’s drinking, the consequences are generally BAD].  At any rate, if I have Celiac then I need to remember my last “gluten.”  I need to remember the consequences.

Strangely, after living it up this weekend with gluten, my joint pain has arrived within a couple of days.  Brain fog was fairly immediate.    I was also rather pissy for a few days — and that’s not like me.  It was very hard to overcome.

I’ve been experimenting with meds.  I have been off of Zoloft [an antidepressant my primary gave me for muscle weakness/fatigue] for two months.  I have been off of low dose naltrexone for a couple of weeks.  Due to the nerve pain returning last night, I am going to make haste to get a refill on my prescription today.  Strangely, I have read that LDN is used to help manage Celiac Disease [which is an autoimmune condition and not a “food allergy.”]  Is the nerve pain tied into the diet I enjoyed a few days ago or is it a result of the lack of LDN?  I don’t know.  I’m not playing with it, though.

At any rate, the past few days have given me a new appreciation for people who have Celiac Disease — even just selecting things to eat in a restaurant.   I thought it would be easier than this.  I thought it would simply be “don’t eat bread” and “don’t eat pasta.”  Period.  It’s trickier than that. I’ve also read about people who are incredibly sensitive and have been “cross contaminated.”  Maybe a little flour sprinkled  on someone’s chicken breast because it was next to the order that was being breaded or battered?  Then there is the knee-jerk reaction to order ice cream with cookies in it.  Then there’s the croutons on salads.  Then there’s the fear that if you ask for them without croutons that they’ll put them on by mistake and try to pick them off.   Then after a couple of bad experiences — and the bad experiences can bring symptoms for days or weeks – then who can trust dining out again?

So while I said I sort of hope this is Celiac, please know that I’m not intentionally impugning the difficult lifestyle of someone with the condition.  But I am trying to think “positive.”