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
      103,625
    • Total Posts
      918,379
  • Topics

  • Posts

    • glutened by lays potato chips?
      I ate some baked lays last night and felt very sick all night and haven't been feeling great all day today. Other than that I didn't eat anything different from what I normally eat and there was no risk of cross contamination with anything.. These were the only thing I had that was different. They're labeled gluten free so I figured it would be okay, but I started feeling sick pretty soon after eating them. I'm not sure if it's another ingredient in them or what (and i know it's not the soy).. Has anyone else had a reaction to lays potato chips?
    • Symptoms In Toddlers?
      Welcome Ashley! Here are the current tests.  The DGP versions seem to work a bit better than the TTG in small children.  So, ask for the complete panel (and get it all in one stick....my 15 year still hates to get blood drawn ! http://www.cureceliacdisease.org/screening/ Your doctors are wrong!  They must be reading old medical text books.  Not all kids or people have failure to thrive!  You can even be symptom free!. I was anemic and had no intestinal issues when I was diagnosed.  celiac disease affects everyone differently and that's probably why so many folks are not diagnosed. Your kids (parents, siblings too) should be tested every few years (sooner if symptoms develop) per all the leading celiac researchers/doctors if a first-degree relative has celiac disease (like you!)  celiac disease can develop at any age! Hope this helps!   
    • amalgam dental fillings - remove or not?
      Do you have celiac disease?  This is a celiac forum and that's what we are most knowledgeable about. http://www.cureceliacdisease.org/screening/ Amalgam fillings do not have lead that I know.  What you read was probably mercury.  You could have them removed, but only by a dentist who has the knowledge and skill.   I think you need to do some more research so that you can make an informed decision. I wish you well. 
    • Newly diagnosed and totally overwhelmed
      Welcome! Go ahead and rant!  Scream and holler!  Weep.  It is totally normal to go through a grieving process.  We have all been there!  You are NOT alone! When you pick yourself off the floor, start researching.  Learn about the gluten free diet.  Start with easy-to-digest foods that are naturally gluten free (meat, fish, veggies, fruit, etc.).  You may have to give up dairy for a short time until your villi heal (the villi tips release enzymes that help digest lactose (milk sugars).  Skip all the processed foods until you are improving.  That will give yourself time to forget what bread really tastes like.  Avoid eating out for a few months -- it's easy to get cross contamination.  Best to explain your gluten-free needs when you, yourself, "get it".  Read our Newbie 101 thread under "Coping" for valuable tips.   You can go out and drink with your friends.  You might have to avoid alcohol for a few months.  But when healed you can drink!  Just no beers, malted beverages.  Most distilled liquor (e.g. volka) is gluten free.   So, is wine.  Skip the gluten free beer for a long time.   Find other celiacs in your area.  In the meantime, visit with us.  It does get better.        
    • amalgam dental fillings - remove or not?
      Hi everyone, I'm going through some health issues right now and when searching for possible causes of my symptoms and blood test results, I see lead poissoning popping up quite a few times. Now, I have many amalgam fillings in my mouth since childhood, so naturally I'm thinking if that might play a role and if removing them would make a difference. But from what I read online removing the amalgam fillings is not recommended and does not bring any health benefits. I have mixed feelings about this issue and would really appreciate some advice. Thanks in advance for any comments. Greetings from Mexico. :-)
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,716
    • Most Online
      1,763

    Newest Member
    Acomys
    Joined