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

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3 thoughts on “Diagnosis and the 5 Little Stages

  1. You will NOT be a burden at family gatherings! And I personally vow to provide a reasonable facsimile of a wedding cake (note I said facsimile) at your sister’s wedding. Here is the GF (see …we’re already getting the lingo down) menu from Outback’s Steakhouse. The friend I told you about who has Celiac’s? This is what we always give her a gift certificate to and, gluten or no, I think some of the choices sound pretty good.
    Delighted you feel better. And please. Don’t. Lick. Anyone’s. Food. Ever.

  2. Pingback: Good. Gooder. Bestest. |

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