Bloody Lymey

A Blog About Living with Lyme Disease

The Diagnostic World Continues — Celiac Disease

on September 8, 2012

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.”

 


9 responses to “The Diagnostic World Continues — Celiac Disease

  1. Lymed Out says:

    I hear ya! I was tested negative for celiac, but many people are gluten intolerant. I just wrote a blog about the whole30. Please read this! if not, you need to buy the book! http://lymedout.wordpress.com/2012/08/16/the-whole30-program-and-the-paleo-way-of-life/

  2. Heini says:

    Hi, I’m a chronic/late stage lymie, and before being diagnosed thought I had IBS or gluten intolerance, but in fact a blood test revealed I was strongly allergic to Baker’s yeast! (I didn’t know that sort of allergy existed) and another that I was (genetically inherited) lactose-intolerant. After these results I only eat yeast free stuff (yeast free rye bread, rice cakes, oat cakes, porridge etc) and cut down dairy (but not obsessively) eg lactose-free milk is fine, so is parmesan cheese, but ice cream will make me bloated and more in less than 15mins. After cutting these out and trying to avoid sugar (not always) I have got my pre-lyme weight back and am not bloated anylonger, and the best – I don’t need to run to loo four times before 9am..
    Try avoiding yeast (eg pizza made with yeast free flat (soda) bread and parmesan instead of mozzarella for topping) and see if you can tolerate the ‘grain products’ that way.
    Kind regards

    • Becki says:

      Heini, thank you so much. I’ll have to try that. Frankly I was JUST talking about how there seem to be some “gluten” things that are worse for me than others …….. pizza & bread seem the worst, while I sort of tolerate pasta okay (I can feel a difference but the fallout afterward is more “worth” it). I’ll definitely try eliminating that and seeing what happens.

      I’ve had a recurring stomach bug for three months now – with a fever and without – and finally see a gastro guy on Monday. (My boyfriend keeps getting it, too, so I don’t know that it’s tied into Lyme) so maybe I can get him to listen up about my other issues. Honestly I don’t know why doctors shrug off bloating so much. It’s not like my hands get a tiny bit puffy. I literally go up 2 pants sizes.

      Anyway, best wishes to you and happy 2013. Thanks for the tips. 🙂

      • Heini says:

        Hi Becki,
        When you see your gastro specialist ask for test to see if you have any parasites: I had parasites called Blastocystis Hominis diagnosed by stool test in 2010, they can be eliminated by metronidazole antibiotic (which also attacks Bb in cyst form, so herxing likely, particularly if you have not used that abx before) – prior that I used to suffer from bad gastroenteritis on regular basis.
        Then many lymies have leaky guts (course of erythromycine helps and pro/prebiotics), and then there is the yeast overgrowth that gets worse with antibiotics. When you say pasta is sort of ok for you, but pizza and bread cause problems – that’s how I was. If you think what baker’s yeast does to bread and pizza dough – that’s what is happening in your tummy, and you need bigger pants, as did I in the past. Bevare of dried yeast added in many food products (often meat/fish that is coated with breadcrums). Pasta does not have yeast in it.
        Good luck and better health for 2013!

      • Becki says:

        You are a wealth of information. I can’t thank you enough. 🙂

        On Sat, Dec 29, 2012 at 2:43 PM, Bloody Lymey

      • Heini says:

        Have a look at this:

        Gastrointestinal and Hepatic Manifestations of Tickborne Diseases in the
        United States

        Syed Ali Zaidi and Carol Singer

        Division of Infectious Diseases, Long Island Jewish Medical Center,
        Long Island Campus for the Albert Einstein College of Medicine, New Hyde
        Park, New York

        Click here to read the rest of this free article :-

        Happy and Healthier New Year!

    • Becki says:

      PS I was pondering the gluten thing again ……. I used to work at a pizza place that bought bulk bags of flour called “high gluten flour.” This was in the ’80’s. I’m wondering if places still use that or not for things that need more help “rising.”

  3. Heini says:

    sorry I don’t know where the link disappeared – or is it a security feature that it drops off? I’ll put it below again –
    http://cid.oxfordjournals.org/content/34/9/1206.long

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