A Year, A Novel, A Thank You

[Adalaide]

So it seems that after all this time, celiac is just a joke in my house.

Yesterday we were at the store and I was very closely examining something or other, reading the ingredients considering my options. My husband was waving something in my face and I was ignoring him. When he didn't give up I finally looked up and he was waving a bag of wheat germ at me.

Today he is at work and sent me a picture of cupcakes decorated like dogs that are called scottiecakes. I told him it is actually called poison by text. This turned into a text battle of him trying to get me to lick my phone.

A year ago tomorrow is when I got the call with my biopsy results. This was quite a shock since I hadn't even known I had had a biopsy. In a daze I googled celiac, hoping for the best, fearing I was dying, praying it was an answer. It was far worse than I feared. Life as I knew it was over. I didn't cry, I bawled. I sobbed like a child, those dry, racking sobs until I was physically ill. I cried more. I begged and pleaded with God. I told him that this was wrong, and that the doctor had to be wrong. I told him this was too much to bear. I begged for anything in the world but this. I bargained. When there were no more tears and no more prayers I just laid in the bed and continued sobbing uncontrollably until I slept.

I usually handle things better, but I'm also rarely blindsided. There was no road to diagnosis. While I had been sick for many years, this was never brought up. Not even with the idea of a blood test let alone the biopsy by which I was diagnosed. It was like I got hit by a gluten free semi out of nowhere. I kept thinking of two things over and over. First was that the sicker I got, the more I turned to my diet to fix my problems. I added more and more whole grains, WHOLE WHEAT to my diet to help be more healthy. The sicker I got, the more I tried to be healthy, the more I was poisoning myself, the sicker I got... I vicious twisted cycle. Second was that I grew up spending every Saturday of my life in my grammy's kitchen baking. It has always been my favorite hobby. I make killer breads, the world's best pie crust, to die for cookies. Everyone looks forward to my holiday care packages. I bake all the time because I enjoy it, and I enjoy sharing that with everyone I know. Mostly it was something that I shared with my Grammy. I felt like a piece of my soul had been stolen.

My birthday is Jan. 5 and I got my head together pretty quickly. I was ready to go gluten free before my birthday but also realized that a few extra days at that point were not going to kill me or make me any sicker than I already was. I enjoyed my birthday as planned, which included the last time I've ever had red velvet cake. On Jan. 7 I officially went gluten free, and have never once cheated, although I have been tempted many times.

The road has not been easy. Since then I have been diagnosed with pseudotumor cerebri, which has a whole new set of dietary restrictions. I am currently and successfully challenging many of these and expanding my diet and whole new ways. My body also betrayed me with the rash. I consider myself insanely lucky to have developed it at this stage, known immediately what it was and what to do. Because of that I was able to immediately restrict my diet (AGAIN!!! GAH) and ditch the rash in fairly short order and can now tolerate moderate amounts of iodine in my diet. I have cried in grocery stores. I have had complete meltdowns about how unfair it all is. I think I shared my story about "the toaster incident" which may have been a slight overreaction on my part.

After a year though I feel healthier than I ever remember feeling in my life. That isn't saying much. I can still barely exercise, 7-10 minutes 2 or 3 times a week on my elliptical is enough to about kill me. My neuropathy is as fun as ever. We still have no real explanation for the swelling in my left leg. I tire easily and can't stand more than 2-3 hours before I have cramps so bad in my feet and legs that I'll be taken out for days. But, I have more good than bad days. I can sit up in a chair for more than 15 or 20 minutes at a time. I don't sleep for 16 to 20 hours a day. I feel like a person!!! And best of all, celiac is just something that happens to be part of my life. Sometimes it is rather annoying. Sometimes I get really pissed off. (The other day my husband pointed out to me at the gas station that they had red velvet donuts. I almost strangled him.) Mostly, my diagnoses saved my life. If my gallbladder hadn't gone bad, and my insurance hadn't refused to pay for the surgery which left me getting worse until I needed emergency surgery and an ERCP the day before Christmas, I may have died young and undiagnosed. Over wheat.

I just want to say thank you to everyone who has ever had a kind word. For me or anyone else. Some of you have become dear friends and I couldn't possibly count or name you all but I will always remember that it was Skylark who was the first to offer me gentle words of encouragement that first night. For any of you who are new and who have ventured through this novel, I hope you see that there is hope. Yes, this is for life, but it doesn't own you. I conquer hardships in life with humor, and that may or may not work for you, but I highly recommend it. It gets easier, I promise. A year in there are still rough days some days, but over all I have to say that I couldn't be more thrilled to be a celiac.

[nvsmom]

(((HUGS))) Happy healthy anniversary.

[IrishHeart]

You know what I always say, babes..."Every year is a healing year."

You have come this far and next year, there will be even more progress. I promise!

I did not believe it myself 2 years ago, but here I am.

Those of us who come back from the walking dead are survivors, warriors and tough broads indeed.

Your sharp sense of humor was one of the first things I noticed in you and I thought "this girl is going to be all right".

Humor saves yer arse everytime.

Congrats on rising up like a phoenix and seeing that being a celiac is not a death sentence, but in fact, a chance for a brand new life.

I'm right here with you, holding your hand ( and giving you a swift boot in the butt if you ever need it ) and I am delighted FOR you--- that you are healing. Stay strong.

Looking forward to hearing about your giraffe encounter. I hope you squeal like a little girl and your hubs gets it on camera. I want pics!

I. Just. Love. You.

[bartfull]

Adalaide, I only have one thing to say to you:

((((((((((((((((((((((((((((((((((((((((((((((((HUGS!!!!!!!!!!))))))))))))))))))))))))))))))))))))))))))))))))

[julissa]

and a thank you to you for sharing your story. you are right, it does give me some hope. at this point in my journey which has just started a week before Thanksgiving, I can't see past all the restrictions I have. I can't imagine a normal life again. I feel like I am ruled by food, and I am afraid all the time when I am around gluten. it is beyond ruling my life, it is taking over. I hope in a year I can write a novel like yours, thanks...

[VeggieGal]

Hi Adalaide, its good to read your experiences and Happy Anniversary! I'm new to all this (positive bloodwork and awaiting biopsy..so Im grumpy on gluten at the mo!)

I so related to your comment.....

"

[mushroom]

You are so right in your approach. If you treat it like a death sentence, it will feel like it. If you treat it as just one more challenge in life to be overcome, it WILL be overcome. Attitude is everything. All you others coming along, listen to Adelaide. She knows whereof she speaks. It is all right to cry, rant and rave, so long as that is not all that you do. Get it out of your system, and then deal with/to it. 'Shroom, in her motherhenliness.

[Celiac Mindwarp]

I always smile when I see your name at the top of a message. I always know whatever is coming will be straight, funny and from the heart. Congratulations on your first year, and massive good wishes for the year to come x

[GottaSki]

Congratulations!!!

That first year is a b%$@# and I can honestly say it is the hardest -- things can still go pear-shaped but you are strong and will overcome each road block given time.

May this year be your best ever - Cheers!

[rosetapper23]

Sweet Adalaide,

I believe we've all walked in your shoes--the tears, the frustrations, the comfort we wish we could get back again.....but it gets so much better, as you know. This next year will be MUCH easier for you--I guarantee!

I'm a bit worried that you're still having muscle cramps, though. Have you tried mixing 1/2 teaspoon of organic flaxseed oil and 3/4 teaspoon of organic safflower oil into a smoothie or glass of juice on a daily basis? It really does work to make your muscles "normal" again. Cramping and muscle weakness used to be one of my biggest complaints, and going gluten free didn't take care of it. However, I read about mixing these parent essential oils after reading Brian Peskin's book, "The HIdden Story of Cancer," where he explained how they can help people's muscles recover from exercise more quickly. My muscles have felt great ever since, and others on this forum who have tried this solution have told me that it has helped them, too. Also, muscle weakness and cramping can be an indication that you're low in manganese and/or silicon. I take chelated manganese and BioSil on a result basis so that my tendons, ligaments, and muscles remain healthy. Just suggestions, honey.....

May 2013 bring you happiness and great gluten-free fare!

[Adalaide]

Thank you everyone. ((((HUGS)))) back!!! I love you all too! May 2013 bring happiness and be the best year for all of us.

I used to be afraid life would never be normal again. This did take over my life, enough that I learned what I needed and then was able to let it slide into the background. I'm not afraid of gluten, not exactly. I am though scared to death of toddlers. Walking, breathing gluten bombs!

In my worst grocery store moment I was tempted to beat some people senseless with bread for looking at me funny while I cried in the bakery section. I do try to keep the sense of humor but it is true that some days the best it gets is simple restraint of my desire to strangle some people. (Usually family.)

I'll look into what you said Rose. A year ago if I spent 30 minutes making dinner I would have cramping so bad I wanted to die, so my few hours now are pure wins. I assumed it was a sign of healing and that I've come a long way, but if there is some sort of food or food type thing I can add that will help I am open to trying. I try to avoid pills whenever I can.

[GFinDC]

What do you mean we can't eat red velvet donuts ?!? Just kidding!

But licking the cell phone pic, eww! At least nobody will be eating Twinkies anymore!

Thanks for the post Adelaide. It's easy to forget how it feels to be starting out on the gluten-free diet as a newbie. I mean really, who would want to remember that anyway? It sure gets a lot easier with some time though. And some help from gluten-free friends on celiac com.

[rosetapper23]

Adelaide,

Yes, I hope you're open to taking the parent essential oils. They have to be taken in the correct ratio, though, which is why I provided the measurements. You should start feeling better immediately. Muscle pain and weakness were part of my life for 50 years before I learned about this apparent deficiency that I had. Other celiacs have been helped immensely....and it's a very simple solution. Also, your skin and hair will look great! It also clears all plaque from your arterial system. A recent echocardiogram I had showed that I have ZERO plaque in my veins and arteries, and the technician told me that this is extremely rare. Believe me, the ratio of oils truly works miracles!