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Hi- My Name Is Valerie :)

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Posted 19 July 2014 - 12:46 PM

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! :)

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Posted 19 July 2014 - 04:52 PM

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/Cen...iac-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. :)

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I am my husband's "Silly Yak Girl" :)
I was diagnosed with Celiac Disease in January 2013. I also have Lupus and Common Variable Immunodeficiency(CVID) for which I am on IVIG.

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Posted 19 July 2014 - 07:55 PM

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.
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Been having issues since forever
First issues I can connect to celiac was in middle school
Vit deficiencies, muscle spasms, fatigue 😴😴, migraines 😣😣, abdominal pain, joint pain are most prominent
April 2014- Nutritionist suggested celiac
May 2014- "reverse gluten challenge" © 2014 by "georgia_guy" 😁
28 May 2014- Officlal member of the Silly Yak Club per tests done at private lab out of pocket-have to stand corrected on previos statements, I have now seen the actual results...IgA defficient, IgG was high on both tests
29 May 2014- Start of Gluten Free life!
I am weird and random, and I proudly claim it!



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Posted 19 July 2014 - 11:03 PM

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!

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Beef and pork free due to intolerance since 2005, Gluten free since March 2014, Coffee free due to a developed intolerance June 2014, Egg free due to a developed intolerance August 2014
Misdiagnosed since 2000 with chronic fatigue syndrome, major depression and anxiety disorder.
Requested doc test for Celiac disease in April 2014.
Blood test positive for  Celiac disease May 2014.

Celiac Dx confirmed via small intestine biopsy 6/26/14
Fatigue,.depression, anxiety, daily headaches, and a laundry list of other symptoms have diminished slowly since I stopped eating gluten.

Who knows how much longer I would have suffered if I continued to rely on doctors to think of testing me for celiac disease.




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Posted 21 July 2014 - 04:10 AM

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!!

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