Diagnosis and the 5 Little Stages

I’m grieving. Yes, I am grieving the loss of bread…pizza crust…everything bagels…beer.  I’m grieving stress-free trips to restaurants…grieving easy family get-togethers and stress free events.

I was diagnosed with celiac disease last week.  So thankful (to the point of tears) that I finally have a firm diagnosis for what has perhaps been plaguing me for over a decade. It’s likely that issues I’ve been fighting since I was a child could be the result of CD.

As this is my first post about it…I’m going to go ahead and nerd it out for a paragraph or two and give you a few ins and outs of the disease (afterall, it’s helpful to be educational every once in a while)…

Celiac disease is a lifelong autoimmune disease affecting mainly the small intestine that affects nearly 1 in 132 individuals in the US. Those suffering from the disease are unable to ingest gluten, a protein found in grains like wheat, barley, rye and malt. Eating gluten acts as a poison (always exciting), damaging the hair-like projections called villi that line the small intestine, leading the intestines to stop absorbing nutrients. (See picture below.)

The pictures show the difference between healthy villi (left) and damaged villi (right). The damaged villi gets brittle and flat. The efficiency to abosorb nutrients to our body has reduced tremendously.

If CD goes untreated, it can damage the small bowel and lead to an increased risk of certain long-term conditions and cancers.

The cause of celiac disease is unknown, although according to the Celiac Disease Foundation, it may be linked to a group of genes on Chromosome 6. Some experts believe that stressful events such as surgery, severe emotional stress or childbirth may trigger symptoms for the first time.

What are the symptoms?  Well…there are many. Celiacs may experience some, all or none of these:  abdominal cramping, distention and bloating, chronic diarrhea or constipation – or both, fatty stools, anemia, malabsorption, nausea and vomiting, depression, mouth ulcers, bone or joint pain, fatigue, infertility, and osteoporosis.  I experienced most of these (although to preserve any dignity I still have I will not specify which ones)…and there are also additional things my doctor believes may be the result of CD.

Now that you’re edumacated on the what and the why…you may be wondering how you cure it.

Well (frown) – there is not currently a cure for celiac disease. There’s no medicine to fight the effects of gluten should it be ingested. However, (happy face) the relief from the disease is 100% in my control (and some of you know how I am about control).  I am in charge of my “treatment” – no pill to take, no shots, no weird concoctions to drink every morning…100% Hannah E. Hayes regulated.

Eliminating all gluten from the diet is the only way to combat CD. It is the only proven treatment for healing the gut and promoting regrowth of intestinal villi. (Three cheers for happy villi!) The time it takes to fully recover depends on how long the intestinal damage has been occurring.

According to my doctor, my insides look like a war-zone…but after being on a completely gluten free diet for the last few days…I feel like I’ve been reborn.  Distention has been alleviated…stabbing pain in my side is gone. I feel incredible.

However, as a self-proclaimed carbohydrate addict, this has not been an easy last few days…I am currently in the midst of what I would like to call: My Gluten Free Journey through the 5 Stages of Grief

1)      Denial – My doctor had suspected that this is what had been plaguing me…but prior to the results, and even a while after, I was in a serious state of denial – As bad as I was feeling, I was sure there was no way some stupid bread protein was causing all my distress…afterall, how stupid does it sound? “Sorry…that pasta you just ate is making your villi lay down.”  Someone at work was eating pizza in front of  me and all I wanted to do was lick it. Certainly licking it wouldn’t hurt me (although it turns out, it may have), but he probably would have hurt me for licking his lunch. I was convinced that I’d never be able to live or follow this new diet…I of course was wrong.

2)      Anger – The day of the diagnosis – as I was trying to figure out what to pick up for lunch on the way to work, I became extremely upset. I felt like gluten was in EVERYTHING. And in all honesty…it’s in a lot of things: Soy sauce, vegetable broth, bread (obviously), beer, lunch meat, salad dressing, soup…even Communion wafers (how will I explain that at the pearly gates?!).  I was angry that even going to a family function where food would be served would be such an ordeal. I was pissed off about having to stand and wait for the pharmacist today so I could ask her whether or not my Adderall has gluten in it. (Side note : Some pharmacists need to get it together – not you of course, Betsy.  Pharmacist said, “well I don’t really know what gluten is so I don’t know what to tell you.” I can’t be the only one that has a gluten restriction in Greensboro…certainly I’m not the only one who has ever said anything to this Pharmacist about it. As cross-contamination is one of the most detrimental issues with a gluten-free lifestyle, I found myself quite frustrated with the lack of concern.)

3)      Bargaining – Maybe, just maybe, I’ll start to feel better…then a little bread won’t hurt…soup won’t hurt…a sip or two of beer won’t kill me.  Despite my doctor’s warning (that I needed to treat this like I would a severe peanut allergy) – I was contemplating whether or not I’d be ok with a cheat day…or a cheat meal at least.  Well, without really trying to “cheat”, I had a flavored vodka drink the other night. While plain vodka should be free of gluten, most manufactures make no gluten-free claims when it comes to flavored liquors as there is significant cross-contamination normally. Well – that one little drink, fought back. While it wasn’t severe, I could certainly tell that I had made my insides extremely angry…so despite my original theory…there is no cheating or slipping up. I can’t take feeling that poorly anymore…it’s not worth it.

4)      Depression – Am I sad about no more gluten? Hell yes I’m sad. I’ve always wanted to travel to Italy…for the food of course. The pasta, the pizza, the meatballs (why can’t I have meatballs? Breadcrumbs are used as a filler)…wine is ok…so I can enjoy that. But I can spend a lot less money and fly over a lot less ocean and enjoy wine here…I’m sad that I won’t be able to enjoy wedding cake at my sister’s wedding…I feel like such a burden with my family, especially in the event of a get together…I’ve got a cousin with a severe peanut allergy and no one has ever yelled at him for being special, so I don’t know why I feel like it will be different with me…I guess there’s just a lot more involved in determining whether something has gluten vs. whether or not it’s got nuts.  I’m sad that I’ve been diagnosed with a disease that I’ll never be able to get rid of. I’m sad that my future children will have to be tested for CD and may have the same limitations.

5)      Acceptance – While I may be sad at what can no longer be – I feel fantastic. All of my symtoms went away. All of them! I haven’t thrown up in 3.5 days (which is a record lately). I don’t hurt after eating. I have energy again! ENERGY!!!! I haven’t know what that was like for months!  I started researching the heck out of being gluten-free…I’ve read other blogs on the subject…downloaded recipes…even found an amazing Gluten-free bakery that just opened in the area (www.lindysgoodiesbakery.com).  Corn tortillas are my new BFF.  The vast array of gluten-free options coupled with the fact that I have never felt better or healthier in my life is why I have happily reached the point of acceptance with my celiac disease. 

And…the icing on the cake…I lost weight this week!!!

Can’t begin to tell you how grateful I am that I’ve got some direction. It hasn’t been an easy road, and to those of you that have suffered along with me, I apologize for the roller coaster…but get ready.  A new and improved Hannah is emerging…and she is going to let nothing stand in her way! Except maybe a biscuit…

“The most significant change in a person’s life is a change of attitude. Right attitudes produce right actions.” ~Willam J. Johnston


Fact or Crap?

Welcome ladies and gentleman to an impromptu version of fact or crap….also known as myth or reality… truth or false…you get the idea!  Now…let’s test your skill…

1)  Fact or crap: When you have the flu, food is the last thing on your mind.

 Crap!! I was the lucky recipient of the flu or some other crazy virus last week, and all I wanted to do was eat!!! What is up with that? I missed 3 days of work, and thank goodness there wasn’t really that much to eat in the house – I would have killed it! Ended up giving in to my craving for egg salad (so weird) – but I made it so could at least control the contents.

 2)  Fact or crap:  Working in teams at the gym is not a good thing when you’ve increased your fiber intake.

Fact!! So let me paint this picture for you…increased fiber, plus having your gym partner hold your feet while you try to do as many sit-ups as possible in a minute…I think you know what comes next. I guess it was a good icebreaker…ok maybe not. Maybe “wind” breaker would be a better term to describe it. Explains why she has stayed far away from me since then…

 3) Fact or crap: I’ve noticed a huge difference in the way my clothing fits.

Crap! (Can you picture my pouty face?) Not sure why…maybe I’m still holding on to water. Maybe it’s female bloat or I swallowed to much air. (Haha I googled the last one…Swallowing too much air is an actual reason for bloat. If only it were that easy.)  Don’t feel like things are fitting any better…don’t notice a difference in my face or in my appearance.  Would have thought I would have seen a difference by now…in some ways I’d rather lose inches than weight.

 4)  And finally…fact or crap: I can now mark off weight loss goal number #2!

Fact!! Lose ten pounds. Check. Lose 11 pounds. Check. Lose 12.4 pounds. Check check!!! Woot woot!!! So excited for the loss this week! (And I have a confession…I cheated a little this week so I’m even more shocked.)

I think the total loss is why I’m a little bummed about not “noticing” it more. I know I will…I know the more I drop that scale number, the more I’ll see the difference.  I’m such an impatient person!!! Back to that ‘unable to visualize’ it thing. I’m so results driven…I’m seeing them as far as the number…but I’m so self-conscious that I think that’s why I’m in such desperation to see the difference in terms of physique.  As much as I want to sit here and try and convince myself that this isn’t all about what size I am or what I look like, it is. I’m not currently that unhealthy (that I know of) – so to say that I’m only doing this for health would be a lie. Like I’ve mentioned in previous posts, there’s nothing I would love more than to look in the mirror and love what I see. Or to Baywatch it down the beach (yep…including the slow motion running through the waves with a floatation device in hand) and have it look attractive.  I’ll even settle for finally not wanting to break a dressing room mirror with its awkward angles and horrendous lighting.

I’m well aware that fixing the weight issues now will prevent issues in the future, but it’s so hard to relate to that “pain” of unhealthiness if I’m not sure that I’ve even experienced the severity of it.

I know what you’re thinking…”Just think about how much better you’ll feel…think of what you’re preventing.” Well I know that…but I have found that I’m so much more motivated by pain.  That if I associate so much pain with the way I am now, that I’ll change my ways.  Maybe that’s why I’ve been unsuccessful previously…because I’ve never had that hit rock-bottom point in terms of health.  I used to beg an ex (who will remain nameless) to please tell me that I disgusted him…To tell me that the sight of me and my excess weight made him nauseous.  He didn’t do it (thank God) – but I had convinced myself that if someone told me those horrible things, that it would motivate me to change.  Trust me…I thought the exact same things about myself, but telling myself that I was disgusting over and over again just wasn’t doing the trick.

Disclaimer…Previous statement and what I’m about to say is going to sound really disturbing…and it is in a psychological way.  Not holding anything back on this one – But just so you know, I no longer have these same thoughts.

When I’d get a stomach virus I would in a way be grateful that I might lose a few pounds as a result.  If I’d feel a weird sensation in my left arm, I’d wonder if it was a heart attack so I could finally have my wake up call. I went as far as to think that even if it was something as detrimental as cancer, that chemo would be a way to shed pounds.  (I really hate admitting that. I know many that have gone through the struggle with cancer not only is it not an easy road for the patient, but the family as well…I am by no means trying to minimize the struggle of these unfortunate maladies so I apologize if I have offended you in any way.)  I’d wish for something that would force me to change my life.  I subconsciously wanted to be backed into a corner so I had no choice but to succeed.  Why in the hell have I never been able to decide to change? Why did I want something awful to happen to me because I was too weak or lazy to do it by my own accord?

I have tried extremely hard to change my thinking.  I’m trying to remind myself that I’ve got the opportunity to fix it now before I get to the point where something awful happens.  I’m tired of beating myself up and not allowing myself to be what I know I’m capable of (and this goes beyond weight loss too).  I’ve come a long way from the old mentality.  It’s amazing what finally loving yourself does for your way of thinking….having a great therapist doesn’t hurt either!

I don’t know much, but I do know I am a magnificent person regardless of my size…and I promise you this…when I get the outside looking like the inside…WATCH OUT WORLD!

Love to you all. ~ HH

“A person who has good thoughts cannot ever be ugly.  You can have a wonky nose and a crooked mouth and a double chin and stuck-out teeth, but if you have good thoughts they will shine out of your face like sunbeams and you will always look lovely.” 

 ~Roald Dahl