Sunday, June 13, 2010

My Story-The Early Years

I was diagnosed with Celiac Disease in June of 2006 after going on Weight Watchers.  Everyone around me was losing weight while I was gaining.  My boyfriend at the time was not sympathetic and consistently told me I needed to go to the gym more (stupid boys)!.  I had switched to "all wheat products"; wheat bread, wheat pasta, wheat crackers, wheat flour and all because I was told it was healthier.  Little did I know I was doing more damage to my body then I realized.  I started seeing all different types of doctors.  No one could figure out what was going on.  I had a severe Vitamin D and Calcium deficiency and at the time of diagnosis a Vitamin B deficiency.  I had horrible stomach problems, acne breakouts, hives, hair loss/thinning, gynecological issues and more (these were symptoms I had for many years dating back to childhood).  It was so frustrating not knowing the culprit.  My Pediatrcian told my mom I had a wheat allergy and that I would grow out of it.  And I thought I did, until I realized I didn't.  Then I finally, after going through many other doctors had found two wonderful and amazing doctors: a specialist gynecologist (Dr. Monica Peacock-NYC (646-672-0528) and a specialist endocrinologist Dr. Susan Thys-Jacobs-NYC (212)-506-0246.  

After many blood tests, vitamin supplements, an Endoscopy, a Colonoscopy and going on a gluten-free diet, I was finally able to start my road to recovery in a gluten-free world.  Sadly that meant leaving the only world I knew: a gluten filled world.  Finding the culprit (CD) was the best thing that ever could have happened to me.  No more unknown symptoms!  All I had to do to achieve this bliss was to embark on my new gluten-free lifestyle.    

It seems so easy now that I am gluten-free savvy, but then it was hard.  I will not lie. This IS NOT easy, but once you get the swing of things, it will be hard to remember how tough it really was.  Which brings me to you.  Here.  To Blog.  I want my readers to know that there is so much out there for us gluten-free gals and guys.  I want you to know that you can still have all those foods you once loved, they just have to be made differently.  I know.  Different means bad.  But I am here to tell you, that this is NOT THE CASE!  At all!  Once I got a handle on this new life of mine, I started to experiment in the kitchen.  I am very creative and have always loved baking and cooking, so now I had a challenge ahead.  So I starting converting recipes and then started making my own recipes from scratch.  And from there I got to the other side.  To here.  To Blog.  To help.  So many symptoms, so many days of doctor's trying to help and figure out the culprit.  Years and years went into my diagnosis.  In the end I am just here to support you, my readers.  In the end you will see, this new lifestyle will be great because you will end up feeling greater. So many people nowadays are getting diagnosed.  It's more prevalent now then it was many years ago.  More restaurants and more doctors have more information and are willing to accept that Celiac Disease or Gluten-Intolerance is a big deal and is relevant to some of those patients previously diagnosed with IBS and other conditions.  But that is now.  And it is still a complicated disease to figure out.  Celiac Disease or a Gluten-Intolerance is often masked as IBS and other conditions.  And many doctors do not believe in this disease at all.  Many think that this is in our heads, or is related to stress or something else completely un-profound.  If a doctor does not suggest a gluten-intolerance or Celiac disease, why would you?  You want to believe that doctors know everything.  So your mind doesn't drift there.  

Not every patient out there tests positive for Celiac Disease, but that does not mean you don't have it.  Many doctor's feel that if you don't test positive to Celiac Disease through an Endoscopy, a Colonoscopy or a Blood test, then therefore you don't have Celiac, and therefore it is all in your mind or could be something else unrelated.  This is probably the most frustrating about Doctors.  Now that there is more research being done on this disease and there are different schools of thought: such as the Gluten-Free diet by way of diagnosis.  If you start to feel better after going Gluten-Free, you have your diagnosis.  No need to eat gluten for 6 months and then go for an Endoscopy and hurt your body all over again.  Why poison your body?  In your heart you know what you feel.  And if you FEEL BETTER well then, you have your answer.

Celiac Disease is a hereditary disease however there are many cases now that have nothing to do with genes at all.  There are many types of Celiac Disease such as latent, or silent CD.    As a child I had a wheat allergy, that I was told I would grow out of, and even after all of this, it never occurred to my family or myself that Celiac was the culprit. 

Ahh.  The symptom of Celiac Disease or a Gluten-Intolerance can be utterly dreadful.  And it takes such a long time to get diagnosed, because most of us up until now were not educated about this Disease.  According to Dr. Green’s book on Celiac Disease, CD is one of the most under-diagnosed diseases in the United States.  Celiac Disease: A Hidden Epidemic by Dr. Peter Green you don't hear about it like you hear about other diseases.  I am happy to know that so much research has now been devoted to this.  Finally!  This will help others and help you figure out your new path.  There is so much research and blogs on the Internet dedicated to Celiac Disease.  And that is a comforting feeling.  You are not crazy; this is not in your mind!  No matter what someone tells you.  Even if that person is your doctor.  But once you go Gluten-Free in those months to come, you are going to feel like a different person. And that is what you have to remember when you feel like you are going through hell.  There is a light at the end of this very long and dark tunnel.  

I remember back in 2002 I was meeting my boyfriend's (at the time) family at a Country Club for an all you can eat buffet.  This was prior to my diagnosis.  Everything was breaded, pastas, pastries, saucy sauces loaded with wheat flour, and I piled all of it onto my plate like I was a starving child from Africa.  I think I had almost three servings.  I kept going back for more it was sooo good.  Until it wasn't!  It came on sudden.  I felt so sick I didn't know what to do.  My stomach was in knots with cramps I wouldn't wish on my worst enemy.  It was so embarrassing, I had to excuse myself, and I literally sat in the bathroom for what felt like HOURS.  I think I even broke out into a sweat, tears rolling down my face.  I just didn't know how to cope with whatever was going on with me.  I was in another state at some fancy country club with his ENTIRE extended family.  Oh god! I thought-could this day just be over now?  I had to compose myself, as I didn't know what was wrong and assumed it was my IBS acting up like my gastro doctor had diagnosed me with, and I just dealt with the horrible pains and cramps and stopped eating, praying and waiting for the day to be over so I could get on the train and go home.  I remember my boyfriend wanted to come over after and I was quick to say no way Jos√©!   And of course I just choked it up to a horrible IBS episode.

That's how my episodes were.  It was not constant or consistent.  It was sporadic.  Or maybe it was constant and consistent, but it was constant on a more even and lower level that I got used to.  It was the norm for me, but when it got bad, it was sudden, fast and utterly horrific.

Back in College I had a very serious boyfriend who was aware of my  “IBS" issues.  So that was comforting.  We would go with his family for Chinese food every Sunday when I would come home on Xmas break or a holiday.  Oh god, when I think back to that, and think that no doctor was able to diagnose me correctly, it certainly seems so obvious to me now.  Why didn't my doctor figure this out?!  Chinese restaurants use so many gluten filled sauces.  Oh god, the pain my stomach must have dealt with.

Adding gluten to your body if you have Celiac disease does its damage.  Celiac disease is a multi-symptom disorder that primarily targets the small intestine.  From there it starts and spreads into other areas and progresses into a domino effect.  CD is an absorption disease-or lack there of.  We don’t absorb our nutrients and therefore creates intestinal damage.  When the body of a CD person ingests Gluten-our own body attacks itself and destroys the Villi a part of the intestine that would normally enable us to digest and absorb properly the nutrients our bodies so readily need.  Ingesting gluten is like adding poison to our bodies.  If not detected early on, CD that is, can do unrepairable damage.  However once you go gluten-free, it takes about 6 months for the body to heal.  What I was doing to my body and I didn't even know.  Yikes!  Well, one Sunday too many, we were at the local Chinese restaurant when I started having a horrible gluten attack.  I was healed over in pain in the bathroom and could not function.  I had to go home immediately!  My boyfriend drove me home and I was in the front seat hurled over in pain and crying.  Oh god, that brings back memories!  When we pulled up to my dad's house I was already running up the stairs before my boyfriend even locked the car door.  I had no time to dally I left him by himself.  My parents didn't know what was wrong, I had run up the stairs to not only vomit for hours but lots of other "fun stuff" that I will not mention, but you get the drift-Sweating like a pig and crying.  My step-mom had given me some kind of muscle relaxer that really helped.  And then once the episode was over, I was fine.  And during this episode I had no idea what was really going on.  I had no idea that this was Celiac Disease.  

As a teenager I can’t tell you how many times I took Fiber Con or Pepto-Bismol or Imodium AD.  It helped, but I always had to take these drugs to feel better.

In college I always had these "mysterious" stomach problems.  It really affected my social life and college experience.  I still enjoyed it, don't get me wrong, but I imagine had I known what was really going on, my experience in college would have been so much better.  But I know that I can't look back and regret.  I can only learn, and help others.

Once diagnosed I wanted share my experiences and thoughts with everyone.  If I could somehow help someone else, it made me happier.  I remember always having this "stretching" feeling, which I could not describe.  No one had a clue as to what I was talking about or going through.  I can't tell you how many dates and fun events I had to pass on because of my stomach.  And what did I do to make it feel better?  I ate chicken soup with wheat noodles and saltines.  Well we know now, that, that was certainly not going to make me feel good.  I used to sleep with heating pads and back then hot water bottles (which to this day my dad still prefers to use-lol).  In addition to my stomach problems, I was always tired.  I never had enough energy that a young girl should have.  I always wanted to sleep and rest.  My friends thought I was crazy.  And sometimes they just thought I was lazy.  I wasn't.  But then? Who knew! 

I also always thought I had terrible yeast infections.  It affected my PMS like no other, and I always had the WORST cramps.  I always joke now that having a baby would be a piece of cake after the pain that I have been through.  It got much worse over the years, but I always just choked it up to that being the way God made me.  I remember always going to the doctor on campus and saying I had a yeast infection.  About 75% of the time it never tested positive for that, but they gave me prescription Monistat or whatever else worked for that.  I always thought it helped, but it never really did, it just masked it for that time.  The reason for the thought of yeast infections is because as a Celiac Patient or a Gluten-intolerant patient we don't absorb our nutrients or vitamins correctly.  I had lost a lot of Calcium and Vitamin D over the years, which work hand in hand together along with Estrogen.  And those three things are essential for a healthy "crotch".  Sorry.  I have to say it.  It's important.  Without the balance of those three, you are left feeling "off".  

Remember that episode in Sex and The City when Charlotte was diagnosed with Vulvodynia?  The doctor said her Vagina was "depressed".  Well Vulvodynia is the general term for unknown vaginal discomfort.  It can be very uncomfortable and can often be masked as a yeast infection.  This I struggled with for years!!  Even when I graduated college and had my gynecologist in the city.  Oh god.  It was awful!  

For me those were my most obvious symptoms.  Along with the obvious I had the UN obvious.  The hives, the dermatitis rashes, dark circles under my eyes all the time, depression, acne breakouts, heavy mood swings, puffiness, bloated-ness, horrible headaches, extreme fatigue, hardcore PMS, lactose intolerance, Eczema, and later in life hair thinning, hair loss.  I would get out of the shower and brush my hair and notice WAY too much hair in my brush.  This was very disheartening.  I used to have the longest hair, and suddenly I was realizing that something was very wrong.  Though my hairdressers and all of them (until now) used to say that was normal.  And of course hair shedding is normal.  But that much, is not.

Of course now, being diagnosed, I know that if I have any of the symptoms above, I have somehow ingested gluten.  And it takes about 3 weeks to about 1 1/2 months for that to get out of my system, if by chance I ingest gluten.  That is how I know.  If I accidentally ingest gluten, I don't always get a stomachache.  Sometimes I immediately do, and other times its severe acne breakouts, or hives, or hair thinning/loss.  And that one smidget of cross contamination is a doozy on my body and takes that long to get out.  For me now it's that easy to detect.  And sometimes you will ingest gluten.  It happens.  The key is to know how to handle it.  And back then I had no clue.  I was as ignorant as my doctors.  I had never been educated about Celiac disease, so why would I think to study it?  (Well I was educated a lot later in life about Celiac Disease, because my grandfather was diagnosed with it at the age of 80, and he had it his entire life)!

And now, I know that if I am feeling any symptoms like the feeling of a yeast infection (a Y.I. is what I call it), or extreme rawness on my skin I know that my vitamin D and Calcium levels are off.  So I bump up and take more of vitamins, and within hours I am feeling better.  I no longer need to rush to the doctor to get some kind of prescription for a yeast infection because it is NOT that.  

Toward the road to recovery, my mom had gotten very proactive.  She had taken me to her gynecologist in long island, Dr. Rechter, M.D. in 2002.  She was a fantastic doctor, and a bit more open to the UN-obvious.  She had me on Difulcan for 1 month straight (this was a pill that you ingest rather then insert for yeast infections-but a low dosage) until we figured out what the problem was.  She had diagnosed me with Vulvodynia (as Charlotte in sex and the city was diagnosed with). I was allergy tested for everything under the sun.  I had gotten so unbelievably skinny then because I was told to extract almost everything from my diet (except gluten-go figure).  When nothing came back as abnormal- She then referred me to a Specialist Gynecologist named Dr. Monica Peacocke, M.D.  She was a quirky woman who I still see to this day, who was super sweet but very professional.  She ran tons of tests (not celiac tests) and everything came back normal. She tested for yeast, bacteria's and so on.  Nothing.  But something-obviously.  She then put me on Folic acid, which was a pill I had to insert.  Her reasoning for giving me this was to restore the moisture I had lost because of all the Yeast infections medications I was using when that was not the problem.  I will never forget when she told me with my mom in the room that I had been misdiagnosed and in fact had the crotch of a 65-year-old menopausal woman.  That my crotch had basically dried itself out.  All the good estrogen and good bacteria had disappeared.  Oh god!  No wonder!  Thank god, my boyfriend at the time wanted to "wait" until we were serious.  I have a feeling he might have been gay, but that is a whole other story.  Thankfully at that time, that worked for me.  And the Folic Acid helped a little.  But not enough.   She then put me on a low dosage of Estrogen to also restore what I had lost.  After some time I had gone back to her, and said that it was definitely better but something was still not right.  I of course couldn't explain.  So she sent me to an Alternative Endocrinologist named Dr. Susan Thys-Jacobs (Dr. Susan Thys-Jacobs Alternative Endocrinologist).  She had done all sorts of blood work.  As it turned out I had a horrifically low level of Vitamin D.  I was soo deficient, it's no wonder I couldn't function.  Most doctors nowadays prefer your levels to be anywhere from 70-100 on Vitamin D.  My level after testing was diagnosed 12.  I also had a calcium deficiency, and a Vitamin B/iron deficiency.  WOW.  Dr. Thys put me on her product called Premcal.  Which comes in 3 formulas.  The Premcal l I take is the Regular strength.  And I used to be on Extra Strength.  Premcal is a unique combination of Vitamin D, Calcium and Magnesium.  I have to say that this saved my life.  And I am still on it to this day.  When you take such high levels of Vitamin D and Calcium, it is important to take magnesium because Vitamin D and Calcium can be constipating.  I now take 7,000 units of Vitamin D and 1000 units of Calcium.  What a difference!  And this has helped my PMS, restored the moisture that I lost and drastically reduced all of my symptoms.  BRAVO!!  Instead of getting my period every 20-21 days for 10 days straight with such heaviness and cramps and PMS  galore that I would have to miss work because I was hurled over in bed, I now only get it for 6 days every 29 or 30 days, with 1 day of cramps, and barely need to take Advil for the pain (prior to this product I was taking prescription muscle relaxers to help with the cramps and pms all the time), and I can completely function at work, at home or where ever I am.  It now does not affect my life, and I can now live my life.   And all of this stemmed from having Celiac disease and not absorbing my nutrients and vitamins, which actually go hand in hand.  This disease does damage, if you are not careful.  I was lucky enough to not have other terrible symptoms other people have.  I was lucky that I didn’t have intestinal cancers etc.

After that restored, of course I was thankful, but had yet to be diagnosed with Celiac Disease.  The first few times I was tested for Celiac Disease nothing came back positive.  As I said, not everyone who is diagnosed, is diagnosed the traditional way.  After so much thought and research in my case, Dr. Thys suggested I try going gluten-free and see how my body responds.  Of course at this time I was willing to try anything, even if that meant changing my entire life to something completely different then what I was used to.  I was at this point ready and willing, because I did not want to feel awful and sick anymore.  This was me, being proactive.  I had to be.  Because if this was going to help me, then I needed to embrace this new school of thought.

But It wasn't just bread that I had to eliminate.  Going gluten-free is difficult and trying.  There is gluten in almost everything!! Besides the obvious pastas, breads, pastries, cookies, crackers, there was salad dressings, sauces, teas, marinades, peanut butters, mustards, condiments, cake frosting, rice’s, starches and so much more I can't even list.  I literally had to throw everything out in my apartment and start from scratch!  I was taught to learn how to read labels, and know what to look for.  I was taught that I had to read between the lines, because some products do not say gluten-free and some products often have other ingredients that also have gluten in them and I would have to know that Caramel coloring or Malt meant gluten.  This took time-believe me.  It was hard.  I found myself going to three different supermarkets every time I went food shopping so I could get all of my essentials.  Arrgh! So annoying, and time consuming.  It was a killer, really, but not as much of a killer, had I just disregarded the thought of celiac disease entirely. There were many days where I wanted to cry because it was so frustrating.  It was hard, seeing my friends eat things I couldn't, and some didn't understand.  Some friends would say what's the big deal; I’m sure you will be fine if you have a little, which led to my cheating.  My fault!! Completely-that I would let friends so ignorant of this disease dictate what I should and should not eat.  But again going gluten free is a journey, and we make mistakes.  We are only human. 

And sometimes I remember I would eat gluten anyways.  I would think it wouldn't affect me.  Some doctor's call this cheating.  Is it worth it?  HELL NO!  I remember I would go to restaurants with friends and have a piece of bread anyways, thinking oh it's just one piece.  It won't affect me.  But it would, and not later, immediately.  The last time I had gluten was at my friend Meredith's bachelorette party.  I think that was August of 2006.  Oye.  We had gotten her a Penis shaped cake from this amazing bakery that sadly no longer exists called Masturbakers.  I really wanted a piece, because the group said it was so good so I had a slice.  It was delicious.  So fluffy and squishy and the icing was delightful.  Did I feel anything at that moment or for the rest of the night? No.  Not at all, which was unusual, so I thought I was in the clear.  Then later that night around 1am, my friend and I drunk went to the pizzeria and each had two slices of margarita pizza.  Yum!  The difference was that she was not Celiac and I was.  I can't even tell you the pain I was in after eating that pizza.  I was beyond sick for over three days of pure stomach dissatisfaction along with ridiculous symptoms to follow.  It was horrific!  My stomach was constantly growling with this weird noise, as if my own body couldn't understand why on earth I would do this to myself.  I only wish I could have thrown up the pain was so bad!  After that experience, I NEVER cheated again (intentionally that is).

And I have had episodes since then and even now, but not often.  I do everything in my power to make sure I don't ingest gluten, but sometimes waiters and restaurants don't understand, or I go to a party and later find out the ingredients were not what I was told.  It happens.  I don't take this lightly, but the only way to never ingest gluten would be to never leave your home.  And that is no way to live.  This is a serious disease, but cross contamination is going to occur at some point of your gluten-free life.  The trick is to do what you can to prevent that from happening too many times and to know what to do when it does happen.

After going Gluten free for I want to say about 3 months, I had noticed drastic, I mean DRASTIC changes.  Even within the first month, I noticed change.  I was shocked.  How could I not have known about this!!??  It was baffling.  As it turns out many doctors in the U.S. don't fully recognize Celiac Disease.  It is more accepted overseas in Europe and Australia, go figure.  Only now, are doctors actually having that little light bulb go off in their head.  All of those symptoms I once complained about slowly started to disappear.  The breakouts, the hives, the dark circles, my mood swings, and most of all, something I didn't mention before, I got sick less.  Not stomach sick, but sick.  I used to get strep throat about 3-4 times a year, whopping cough, the flu every single year, horrible cavities etc.  If someone got a cold, I got it worse.  Every single time.  I was always on antibiotics!  It was crazy.  I was constantly calling in sick from work, my co-workers thought I was faking it.  It was such an ordeal.  The truth is, is that when you are ingesting poison into your body, your entire body including your immune system falls by the waste side.  It makes sense.  You are not absorbing vitamins or nutrients correctly so obviously to follow suite, you would get sick more often.  My immune system was shot.  Once I went gluten free and even to this day, I barely get sick.  It was nothing like it was before.  I stopped getting horrible cavities.  Because they say your tooth enamel softens when you don't absorb your nutrients correctly.  Your whole body slowly and steadily starts to deteriorate.

After all of my symptoms started to disappear, my doctors diagnosed me with Celiac Disease.  I had not had the endoscopy or the colonoscopy till years later.  So I was finally healthy and gluten-free.  And I finally felt GREAT.  It felt like a miracle.

I have to thank all of my doctors for working this through with me.  Without them I would not be where I am today.  For that I am grateful. 
Dr. Susan Thys-Jacobs
Dr. Peacock
Dr. Rechter
Thank you.

*** Going gluten free and going super marketing can be a difficult experience.  Tis why I lend my services.  I shop at Westerly Natural Market Westerly Natural Market and Whole Foods Whole Foods and finding GF products if you don't know what you are looking for and/or are a newbie can be trying.  If you need guidance you can email me and set up an appointment with me.  This is, if you are in New York City, Hoboken, Brooklyn or Queens and are willing to venture into the city for a gluten free adventure.  I charge by the hour and will not only take you shopping, but also show you what you need to look for and ask.  If you are interested in this activity you can email me at and in the subject header write supermarket-shopping appointment.  I usually do this on the weekends, but if I am available during the week I would be happy to accommodate you.  I am super friendly, don't be shy!! : )

xoxo Julie

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