Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Hi- My Name Is Valerie :)
0

5 posts in this topic

Hi everyone. My name is Valerie. I am a nineteen year old female and I will be beginning the gluten free diet tomorrow as well as going dairy free. After over a year of various tests and g.i. doctors, I tested positive for lactose intolerance and positive on the blood test for celiac disease. Since my colonoscopy/endoscopy was not as helpful as I was hoping, I will be having genetic testing for celiac disease soon. 

 

For now, I'm here to get to know people and to hear their stories. As a young adult, I am wondering if anyone in the Massachusetts area knows of any good resources and/or support groups. I'm very interested in getting to know people whether it be online or in person. Feel free to ask me any questions. (if you don't feel comfortable posting to the forum, it's fine to message my inbox on here too)

Good luck to everyone, officially diagnosed or even if you are still in the process! :)

0

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome to the gluten-free club!  It will be interesting to see the results of your genetic test.  I have hunch you will be positive for one of the genes and that will get you an official Celiac diagnosis.  Here on the forum we like to get info out to everyone who participates, so we highly suggest posting things to the forum instead of using Pm's so info is accessible to all.

 

There is a good Celiac center in Boston: http://bidmc.org/Centers-and-Departments/Departments/Digestive-Disease-Center/Celiac-Center.aspx

 

There is also the New England Celiac Organization that looks like they have meetings in that area: http://www.healthyvilli.org/

 

You can also just do a google search, especially in big cities there tend to be groups that meet up.  It is nice to go somewhere and be able to eat the food and not feel out of place. :)

0

Share this post


Link to post
Share on other sites

Valerie, welcome to the cool peeps club! I have to say it's nice to see your positive attitude towards the celiac diagnosis. While it's not ideal (especially at a young age when you may not be married yet and thus still have to deal with dating), the positive attitude is a good thing!

I myself had quite the struggle finding celiac as the answer to 10+ years of unexplained medical problems. It took me walking into the hospital with a dangerously low blood sugar level and being sent to a nutritionist to even think of celiac as an answer. I can now attribute 99% of my unexplained medical history to celiac (joint pain, muscle spasms, TIA, blackout, abdominal pain, anxiety, depression, fatigue, irritability, and the list goes on).

As far as a support group, I have been looking for one myself (they are scarce where I live), but a coworker said age saw a listing in the newspaper classifieds for one not far from where I live, so that's I be a place to check as well.

0

Share this post


Link to post
Share on other sites

Im in NJ, also been looking for a group. I am so glad that you are taking control and doing this for yourself. I really wish I knew about celiac disease when I was 19, you will have such a better life sticking with a gluten-free diet. A little about me. I have had health problems since I was a small child. I used to go home everyday in grade school with a stomach ache after lunch. Throughout childhood, I continued to have really severe sicknesses.I was sick often and usually not just a stiffle but a 103 degree fever or something around there. Into my teens I was sick with a string of sinus infections, it was really a never ending loop. Around 16 I started noticing I was sleeping alot and didn't have the energy to do the things a normal 16 year old kid would do. At 17 the doc diagnosed me with chronic fatigue. She said that when things are stressful, it can trigger fatigue. Well when things are stressful, we also eat comfort food like mac n cheese! Over the last 13 years, I have had strange illnesses like an ER visited that resulted in no real diagnosis but simple 'inflamed organs'. I have struggled with constant brain fog, random fevers, flushing in the face after eating meals, "IBS", random muscle aches, muscle loss, daily headaches, EXTREME fatigue, anxiety and depression. I have worked since I was 14 but a few years ago I decided to finally get a college education and a year ago I started at a state university. Since I have been here I have been told that the excruciating pain in my back is arthritis. Now I know that this is common in people with celiac disease, my hands are also starting to be painful when gripping. My first year here was tough, but I managed to get through. In March, I decided to start eating healthier and this meant unintentionally cutting out things that contained gluten. After 2 weeks, my energy improved quite a bit and most of all, the brain fog and GI issues improved. I was amazed by the changes that were slowly happening and I decided to look at my genetic profile that I had previously submitted for ancestry purposes. It said I have a 17 times more likely than an average person to have celiac disease. This made me think about the fact that when my grandmother was living, she never ate pasta! I asked my brother and he said she avoided gluten because it made her sleepy. I thought WOW, she probably had celiac disease her whole life. So I asked my doctor to test me,she told me about the gluten challenge and I put it off because I wanted to continue to be clear headed for finals. She also discouraged me from getting tested, she said its very rare and most people who think they have it, don't. This was a doctor who referred me previously to a shrink because I complained about the fatigue. Well the day after I finished classes I went to the doctor for another problem and she ran extra blood work accidentally for celiac disease. It actually ended up coming back very positive. I am so glad I never had to do a gluten challenge and I am thankful for the mistake that was made. My anxiety has become non existent, I still get bummed out sometimes, but nothing compared to how I was before.

 

Valerie keep going with your gluten free diet and stay healthy!

0

Share this post


Link to post
Share on other sites

Thanks for the resources, LauraTX. That also makes sense about the pm's. Boston isn't too far from where I live and healthyvilli.org looks just as helpful :)

Georgia_guy: I hope the support group you heard about turns out to be a great experience. I never thought of the newspaper- that's a good idea. As far as dating goes, that is going to be a struggle in some ways, but I'll just take my time. Just one more reason not to rush into a relationship, I suppose. 

user001: I can relate to the fatigue, anxiety, and depression. Yesterday was my first day eating gluten free dairy free and also my first day without any stomach pain. Not sure if it's a coincidence, but it was nice either way. I'm so glad to hear that you've felt better after switching to the gluten free diet. 

Thanks everyone for commenting. What an amazing support network!!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,094
    • Total Posts
      920,330
  • Topics

  • Posts

    • Hi!  I've had good luck at the Minnesota state fair because most food booths are only doing one thing so there is no cross-contamination. For example: french fries or chocolate covered bacon or Indian kebabs.   But I live in California and I am heading to the state fair today! Does anybody have any great food suggestions that are definitely gluten-free there? Thanks, Celiac C.
    • Hi.  I have been reading your post and thinking about how my pain was around diagnosis.  It was above the belly button, I think where you are describing.  At the time I assumed I had a stomach ulcer.   I had been taking Neurofen for an ear problem and assumed it was the NSAID that had caused my stomach ulcer (which I actually didn't have, when I had an endoscopy a few weeks later my stomach was looking great! My small intestine was not!).   Going back to the pain, it was a burning feeling.   My doctor prescribed Omeprazole but it didn't touch it.   In fact I ended up with bad D. which eventually lead to me having all the tests for Celiac Disease.   I still get that pain if I eat oats (pure oats) that are supposed to be OK for most Celiacs.     I get various pains in different places in my digestive tract from time to time, but that burning pain is something I won't forget. The other thing I had that you mention was that pain between the shoulder blades.  I had that - I felt almost like someone was pushing my shoulders down.  So odd. I get palpitations when I am anemic.    I hope you get some answers soon.  It is pretty tough having to keep going from one doctor to another, but sometimes it is the only way.   
    • I sit in an ice bath after a long training (running or riding).  It speeds my recovery, I swear!  
    • Oh, one last thing..... ICE PACKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! You'll feel better. Hey, you have a tub? Want to join the polar bear club in the privacy of your own home? Fill that thing with cold water & dump a 5 or 10 lb bag of ice in there. I'm serious.
    • I don't care what she specializes in, you MAKE her do a dh biopsy. I'm not being mean. Please understand that. It's just that I've heard this a thousand times before - no, a thousand one hundred!  Here's another thing ~~~ get her to order a eTG aka TG3 serum (blood test). That is specific for dh.  Oh gosh! Don't you just hate the ones in your ears???!!!!! Nah, we hate ALL of them! I swear though, when those suckers get going in & on your ears it just drives you stark raving mad!!!!! You've convinced me there is more than ample reason to strongly suspect it's dh.  Here's a tip..... the patterning the lab will be looking for is very easily destroyed by scratching so pick you out some prime places that are new & maybe, just maybe you haven't scratched them to smithereens thus far, and make some super thick gauze bandages & place them over those places so even if you reach to scratch (& we know you will! right?) the gauze will remind you & hopefully help to protect it. The biopsy needs to be taken from a clear area adjacent to a fresh lesion. No steroid creams okay? Not till after the biopsy. BTW, if she wants to put you on steroids after the biopsy be warned, 99% of the time there is such a backlash of the rash the moment you go off the steroid that you will wish you were never born. A dx of dh IS a dx of celiac disease & no further testing is needed. Please come back & update us after you see her tomorrow. In the meantime you have my heartfelt sympathy. Take those cold showers & grit your teeth. Hopefully you will soon be able to go gluten free & start getting some relief.   
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,132
    • Most Online
      1,763

    Newest Member
    Feralgurl
    Joined