Brand New And Scared

[afitgirl]

I don't even know where to start.  I don't even know if I have celiacs truly.   I'm at a loss.   I'm a teacher, private personal trainer with specialization in fitness nutrition, and teach 25 fitness classes a month.   I'm a healthy sick person, I guess.    I've know I had low iron for years.  I didn't realize it meant...dealthy low.   3 weeks ago I dropped to the ground passing out and was rushed to a hospital.   Blood transfusion, supplements and 3 weeks  later my hemoglobins when from a 7.6 to a 11.1.  My iron skyrocketed yet my ferritin remained below normal.   Heavy periods they said.   Birth contril pills and an sceduled ablation were the answer.   By chance my OB decided to run a celiac panel.  Boom positive.  My IGA- read positive and my TTG was  17.   Immunoglobin A serium was in the normal range.   I can't quit crying.  I'm so scared.   I went out to buy a bunch of gluten free products to sample and I just cried in the lane.  

I know I'm heading to an endoscopy, I know I keep eating gluten until then.   But from what I read with results like that I'm doomed.    95% chance of finding damage if there is a positive ttg, I've read. 

I have three small children.  I'm scared for them too.  I don't want this life.   I'm sad.   It feels scary and I feel like I will be the one holding my family back from fun things.  

PLUS I LOVE GLUTEN! 

I'm sorry.  I'm really sorry.  I know that I sound so dramatic.  I just lived a life of healthy person and I'm scared. 

Thoughts? advice? 

[BlessedMommy]

Welcome!

 

Yes, you do more likely than not, have celiac. 

 

The great news is that from here on out, you can focus on getting better. There are many great foods out there that can help to take the place of some of your old favorites that you will have to give up. 

 

You should also get the children tested, since celiac is genetic.

[Wi11ow]

I was pretty emotional when I found out too. It seems like such a huge problem. But there are lots of things you can still eat. Fresh veggies, fruit, meats like chicken, turkey, beef, fish, rice, potatoes. I know there will be others along to help you out here. This is a great site to find answers. Lots of great people. Check out the newbie information. It's a good place to start. I cried on and off for days. Every time I thought I was ok, "it's only food", something would come up and set me off again. Food can be an emotional thing.

 

Ask questions. I have been gluten free for only about 3 weeks now, but I haven't tried many of the products yet. Some of them have more sugar and calories! You can do this. Check out the What's for Dinner posts. You can get some ideas from that.

 

When you can take gluten out, think about your health getting better.

[cyclinglady]

Welcome!

You have every right to be sad, upset, angry and all the other emotions that go along with grieving. The good news is that you will get better and you will get use to gluten-free lifestyle!

I was like you. A fitness instuructor and severely anemic which was blamed on heavy periods and a genetic anemia.

Read the newbie section under coping and take the advice given for speedier healing. Get your children tested (there is no huge rush....they will be okay) Do not eat tons of gluten before your endoscopy. I went crazy eating my old gluten favorites and then ended up with some intestinal issues (ate a loaf of sourdough a day, really!) which have resolved.

I am doing great. Beat my Girl Scout troop on a recent 5k and am back on my road bike. My one daughter tested negative which is a miracle since my husband has been gluten-free for 13 years. She will need retesting every 3 years or sooner if symptoms present. Our doc keeps an eye on her iron levels, etc.

Hang in there!

[afitgirl]

Thank you!  Thank you so much for your replies.  I'm so lonely and I walk around in a fog.  I think I feel worse emotionally everyday.     I do plan on getting my children tested but I wanted to wait a bit until I was fully diagnosed.  I don't even have many GI symptoms!   I most likely wouldn't have known for years.      My husband is truly supportive and really trying to help me but I'm just so upset.    I try to cry alone and not involve him as much as possible.   Food is such a huge part of my life.   I see how it would be easy to live gluten free at home but I can't imagine on vacactions.  Especially not 1st world countries.    We love to cook, we love to eat out.  Although I eat extremely healthy I still consume wheat.  Sigh. 

I feel like I have to go to all my favorite places one last time.   And it's so final.  It's not like a diet with an end cheat meal day.  It's for eternity. 

[notme]

I feel like I have to go to all my favorite places one last time.   And it's so final.  It's not like a diet with an end cheat meal day.  It's for enternity. 

 

aw, it's only until you die.  of old age, hopefully, and not a complication from untreated celiac.   once you start seeing symptoms start clearing up, you will be more encouraged.  it takes a minute to wrap your head around it, trust me, i know.  i was in denial in the beginning, until i was so sick i couldn't function.  honestly, once you start feeding your body the 'right' foods you will probably be pleasantly surprised at other things (seemingly unrelated) that may clear up.  celiac makes your body not absorb any of the vitamins and minerals your body needs to stay healthy when you eat gluten.  once your body gets all those good nutrients, it will repair many things!  sure, it's a pain sometimes.  but it beats being IN PAIN  good luck  

[afitgirl]

Yes, you are right.  

But I think that is my problem.  I don't feel sick.  I have so much energy.  I hate to sleep because I want to be active constantly.   I exercise and live life fully.   I thrive with a full plate.   I had a extreme (crime scene type) period every 20 days.  This has most certainly contributed to the anemia.  BUT other than that I felt wonderful.  This celiac panel was done as a way to put my mind at ease about absorption before I got the uterine ablation.   This has blind sided me.     I probably never ever would have known..... which makes me hope that I will have a negative biopsy?  Is there any chance of that or is that more like a miracle?

[Gemini]

Actually...you only think you feel good.  Wait until you go gluten-free and then the anemia goes away and you'll begin to realize you were not well......really!  I was like you....thought I was not bad but I was very, very sick.  It happens so slowly over time that you don't notice how bad it really is.  Until the day I went into a restaurant for dinner and did the same as you...I passed out cold on the floor and ended up in the ER, with a red cell count so low they thought I was hemorrhaging somewhere inside.  I wasn't. I had Celiac.

 

Take a deep breath and relax.  The diet is not horrible and there is tons of food you can eat.  We'll tell you all the good stuff, like the best bread, to help you on your way.

 

tTg does not correlate to severity of damage. Some people have low numbers and have no villi left so you never know.  But it's bad enough that you are severely anemic to the point of passing out.  You don't want to live like that, do you?

[Georgia-guy]

Food is such a huge part of my life. I see how it would be easy to live gluten free at home but I can't imagine on vacactions. Especially not 1st world countries. We love to cook, we love to eat out. Although I eat extremely healthy I still consume wheat. Sigh.

I feel like I have to go to all my favorite places one last time. And it's so final. It's not like a diet with an end cheat meal day. It's for eternity.

Fitgirl, I definitely feel your pain about food. :-( I myself am a "foodie", I love going to new "hole in the wall" restaurants, and I live to cook. Italian cooking is actually my favorite (talk about a load of gluten). I am not a chef by job, but I am a chef at heart, I am the one all my friends come to for good recipes (most of which I make up walking around the grocery store grabbing things off the shelf), and I have actually catered a few friends' weddings. But I have known something was going on, and have been searching for an answer for several years. Everything a doc suggested and tested for was ruled out (most often by me before testing because it only explained a few issues). It wasn't until I was talking to a dietician friend of mine that celiac even came into question, and I went a little while without gluten to see if it made a difference, and it did. I started feeling better in a couple days, and by the end of a week and a half without gluten I could definitely tell the difference. Unfortunately for me, I am not fighting to get my insurance to allow my doctor to run the tests...looks like it's time to pull out the credit card to pay out of pocket. Trust me when I say this, your quality of like will improve. Things you don't even realize are going on you will realize "wow, I wasn't as healthy as I thought I was"

[CathyO]

I'm newly diagnosed, too. A trip in an ambulance and a few days in the cardiac unit got me here. I'm 60, so imagine the changes in my lifestyle! Unlearning everything I know about food and cooking. Did I mention that I collect cook books?

 

I've learned that it's not a death sentence.It's an opportunity to learn even more about food, nutrition, health and my body. We travel frequently. Even internationally (haven't since diagnosis yet). 

 

We've found great alternatives to keep our diet happy at home. We have a12 year old grandson living with us, so we have him to consider. We have our own taste testings to find things we like. We sampled several of the brands of frozen pizza to find our favorites. Gluten free pancake mixes. Pastas. Rating them and voting on them to find our favorites. 

 

Dining out is a challenge, but modern technology helps. There are apps to help find gluten free restaurants. Reviews from others. There are ways to navigate this challenge. Set goals to find places that are gluten free to dine and try them.

 

Dining with friends at their homes will be hard. For right now, we have chosen to have friends come here for dinner rather than go to their place.

 

Yes, it's a huge change. But not insurmountable. Read the forums.ask questions.look for a local support group.

If I can do this, so can you.

[afitgirl]

Wow, thank you you guys for all your support.   It hasn't even been a 5 days for me since getting the blood work so maybe each day will get better?  I just hope I do feel better.   I'm afraid that I wouldn't see a shift in how I feel (more silent) and then I will feel like it's all for nothing. 

I think the problem is my past as centered around food.   As a child/younger adult I struggled with eating disorders. Healing from one and moving to the next.   I've also had a shrink tell me that I have possible OCD with the focus on FOOD.   Shrug.  My children changed my life and I was able to focus more on the athletic training of food and it's properties.  It prompted me making a slight career turn and following a personal training/fitness nutrition certification.    It is the center of my life.  I wish it wasn't true but I don't eat to live.   I live to eat.  

I'm gonna try to make this  a positive thing in time.   I advocate now so much for health and taking care of your body.  Everyone that I have told so far has said, "If they know ANYONE that can do it, it's me."   I wish I had their faith. 

[mamaw]

Hello & Welcome...

others have  given  good  sound  advice.... Once  you  learn  what's  gluten free  &  what  to watch out  for  it  becomes  routine...but  in this  journey  it  takes  lots  of  patience, learning, &  trial & error  along  with  lots  of  emotions that  one  usually  doesn't  know  where  those  are  coming  from... It  is  wonderful  you have  support & understanding  that  alone  helps  make the journey  easier....When you get  down  put  yourself in others  shoes.... those  who  have  no support  of  family  or  friends, those who  have  no  funds  for  health  care  or  gluten-free  food..those  who  struggle  with  other  illness along  with celiac... that  alone  should  make  you find  all the great  things  you have going for you...

Think of  celiac  as a step  in the  road  that  in the  beginning  seemed  impossible  but  soon  the  navigation  falls  into  place  &  all the  missed  food appears.  , only  it  is food  that  heals  your  body  not destroys  it... This  disease  is  better  than  any other  disease------- no  chemo,  no  deadly drugs, just  a  lifestyle  change. (  for  the better)

The  only thing  I  can  say  negative  is that  I  think we all miss  the convenience   of  being  able  to  eat  anything  , anywhere... but  if you  plan  ahead  for  every  scenario  it  too  becomes  easier....

Carry  a  bag  of  gluten-free food  for  work,  car, purse at all  times that  way  you will be never be  starved  &  slip up ... pre-planning  is one  of the best  defenses...... have  sweets  bakes  & frozen  for a  moments  notice.....

We  travel  all over  & we  always  have  gluten-free  food   with us  or  know  where  we  can purchase  no matter  if  we  are in the  US  or  abroad....

 While  you are  waiting  for your  scope  take  this time to  focus  on  the gluten-free  basics plain meats, fruits & veggies...buy  some  gluten-free pretzels, crackers, sweets  & prepare  in your  head  what  is going to happen, this way  you are one step ahead.....

 

Don't  let  celiac  define  who you are  , you  define  celiac  in your  lifestyle....keep the upper  hand.....

 Good  Luck

mamaw