• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Did You Know Someone With Celiac
0

17 posts in this topic

Recommended Posts

carriecraig    2

I have a good friend that I met in college who was DX'd when he was a baby, so he knows nothing but the gluten-free lifestyle. I had known him for 8+ years before I was diagnosed, and my husband and I would make comments (to each other, not our friend) like:

* I heard that you can grow out of this disease, so

* It's been so long since he was diagnosed, he should just try something and see what happens

* No pizza, beer, bread???

My how we've come so far...

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


dlp252    5

Yes, a lady I work with has had it for years. About 4 months ago when I started researching celiac she told me two other people we work with have it as well.

Share this post


Link to post
Share on other sites
happygirl    6

I knew no one with Celiac when I was diagnosed.

Since then, have met people through this board and local group.

But, in the past few months, I have learned that a neighbor of mine in high school (still family friends of ours) was diagnosed with Celiac, and a girl I went to high school with has Celiac.

And, now that I have Celiac, so many people that I tell say, Oh, so and so that I know has it also!

I have yet to just meet someone randomly that also has Celiac.

Share this post


Link to post
Share on other sites
nikki-uk    28

Yep,I know what you mean-it's a learning curve for all our family when my hubby was dx 18 months ago.

He was very ill and the docs told me they were looking for Crohn's diease or Coeliac disease.I went home and googled the 2 diseases-and promptly decided that my husband had to have Crohn's as he was far too ill for it to be 'just an intolerance to a food '!(Oops! :o )

Do you know,I have never met another coeliac-maybe they're hiding.I suppose it's not the first thing you'd tell someone.

I am however a coeliac spotter!

This involves knowing someone who has complained of maybe their IBS,(it could be celiac disease-I'm thinking)

Or a friend who is alway's tired,and looks anaemic and underweight! :ph34r:

Share this post


Link to post
Share on other sites
jerseyangel    409

No--I had never heard of Celiac until shortly before I was Dx. (Hard to believe now!). I have not personally met anyone with it, but my husband's aunt has an in-law with it. I just heard about that last week.

Share this post


Link to post
Share on other sites
Ads by Google:


CMCM    3

I am fairly suspicious my mother in law has it....all her symptoms cropped up suddenly in 1967 just after a serious hysterectomy....she developed psoriasis, migraines, and what she calls IBS, lots of other things that are pretty suspicious of celiac disease. My mom's celiac disease was triggered by her hysterectomy, too. BUt with my mother in law, she simply refuses to acknowledge the possibility of celiac disease because she doesn't want to change her diet. For several years now she has really been chained to her house because of a reluctance to get too far from a toilet. Some people you just can't tell anything. <_<

Share this post


Link to post
Share on other sites
Guest barbara3675   
Guest barbara3675

My granddaughter (who is 7 years old now) had celiac disease since she was one and her mother, my DDDIL was the one that suggested that I get tested a year and a half ago (I am now 60). I am gluten intolerant and carry the gene. The DDDIL put together some symptoms I was having and thought maybe it could be celiac. The doctor test came back negative so I was tested through Enterolab (full panel including gene testing) and it came back positive. I am grateful to her for putting this all together as I feel so much better these days and know that in my latter years, I probably won't have so many troubles as my elderly mother is having now. She (at age 87) is now trying the gluten-free diet to see if that will help her. She started it recently and says she is feeling somewhat better already. It was easier for me when I went gluten-free as I had been cooking and baking for my granddaughter for several years so I just expanded on what I already knew and went from there. I don't buy a lot of gluten-free food anymore other than bread, rolls and crackers etc, I just buy regular products from the store that are gluten-free. I think you can think this thing to death which isn't good, you just need to incorporate it into your life and just get on with it. Barbara

Share this post


Link to post
Share on other sites


Ads by Google:


jenvan    7

I had a friend from college had been diagnosed 2 years before. The funny thing is in college we went on a mission trip overseas together and used to say we must have picked up some parasites there :) Little did we know we did have the same disease...

Share this post


Link to post
Share on other sites
Susan123    1

My friends son was in and out of hospitals until he was 2 years old. He was diagnosed with Celiac disease. I used to leave the hospital after visiting hours and say if I could just take that away from him so that he would be healthy. One year later I was diagnosed and one year after that they said he really didn't have it it was another autoimmune response going on. Karma

Share this post


Link to post
Share on other sites

Many years ago I worked with a woman and both she and her daughter are Celiac. I remember thinking "how weird". I also worked with a woman who was allergic to citric acid, which is in almost everything!

At my current position, there are two other people who are gluten intolerent - that I know of anyway.

Share this post


Link to post
Share on other sites


Ads by Google:


mookie03    2

I knew one person who had it before me- my friends mom- and she was diagnosed about 1 year before me. But since my diagnosis, i have noticed that almost everyone i have told has said "Oh, i just heard about someone who has that - my friend's sister's husband's brother's...etc"...u get the picture. In my experience, knowledge of this disease is really starting to spread and my friends now get so excited when they meet other celiacs- they cant wait to tell me about it!

Share this post


Link to post
Share on other sites
hlm34    1

my boss has it. she has had it for years and has been a tremendous help to me. its great to have a support system. turns out my uncle has it now too. after he heard i had it - he demanded he have the test - and yep, he's got it. he had digestive problems for years. pretty sure my sister has it.

Share this post


Link to post
Share on other sites
luvs2eat    60

I'd never heard of it till I was diagnosed!

My symptoms started in the summer after spending weekends boating in the Delaware River. My doc thought I'd picked up some ugly bug or something and put me thru a course of Flagyl while we waited for my blood work to come back.

My daughter's fiance started having mild gut symptoms that progressed over the next year till he finally took himself to the doctor who suggested gluten intolerance. He thinks I "witch cursed" him!! haha

After my diagnosis, I'm convinced that my sister's lifelong eczema and skin/internal allergies and my brother's occasional eczema are gluten related... but neither will be tested!!

Share this post


Link to post
Share on other sites
Rusla    1

I knew a woman ten years ago that had Celiac, she was rake thin but still cooked with wheat flour and ate things made with wheat. She lost all her teeth and would lose weight if she ate wheat but she never said it endangered her health. I think she really didn't know how dangerous it was because doctors are no better versed in Celiac now than ten years ago.

I thought there was no way I had it because In the last 5 years all the weight I gained. But then I lost lots of teeth too. It was my sister who impressed upon me that two of her friends have it and one I knew was a pretty big guy and I should have tests done.

Share this post


Link to post
Share on other sites
Guest nini   
Guest nini

When I first moved back to GA almost 10 years ago, I got back in touch with an old friend of mine from the high school days, she said that her mother had celiac and didn't eat anything with gluten. I thought this woman was nuts. After hanging around with them for a while, my friend kept telling me that she thought that I had Celiac. After I had two miscarriages I reluctantly tried the diet but I didn't know about all the hidden glutens and I wasn't that vigilant with it. After I got pregnant with my daughter, my OB/GYN told me to go off the gluten free diet because "it was bad for the baby"... I listened to him and ended up having a very tough life threatening pregnacy.

Share this post


Link to post
Share on other sites


Ads by Google:


chrissy    2

i have a friend that has celiac---been diagnosed for 8 years---and she has been trying to get me to be tested for it for a couple of years. from talking with her, i actually knew quite a bit about the disease when my children were diagnosed with it------and i test negative. it seems like either people know someone with it, or they don't know what it is. not too many people know what it is without knowing someone with it.

christine

Share this post


Link to post
Share on other sites
kevsmom    0

My brother has had Celiac for several years. When I began having symptoms, I thought "No", but I was wrong. I suspect that I have a second cousin with it. He is 7 years old and very small for his age. He has always had bowel problems, and has to take medicine to make him go to the bathroom. He wears the same size pants as his 5 year old brother.

I have been trying to talk my cousin (his mother) into having him tested.

Cindy

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
      107,913
    • Total Posts
      938,658
  • Member Statistics

    • Total Members
      65,840
    • Most Online
      3,093

    Newest Member
    Scott Nelson
    Joined
  • Popular Now

  • Topics

  • Posts

    • Yeah been there, done that, I have broken down to learning to how to cook acorns even, fall I steal pumpkins from the city decorations after halloween so I can eat the seeds and sell the meat in baked goods at the markets. I sometimes used to take produce from the grocery stores. Note you can sometimes talk with a manager and haggle on damaged produce they would toss.  I do not do steal them anymore, my family now offers to support me more now days, and the farmers market and bakery sales keep it where I can just afford food.

           It is  risky state, you have to MAKE sure you eating plenty of fat and protein. Otherwise your body eats itself, as the next best source for fats and protein is the stuff stored on your body as the fat and muscles your have. I live this way myself bit more mild since I can not eat meats. But I eat plenty of egg whites, nuts, seeds, and leafy greens. I literally eat every 4-5 hours at least a protein shake to prevent my body from turning on itself. You can actually body build in ketososis. You just need to really load on the fats and protein, it makes for a LEAN and slow building process....not as easy as carb bulking but my only choice due to my ulcerative colitis having carb, and sugar triggers.

          I am allergic to corn and break out in a rash from it....my mother is hispanic and well you see where that goes, I recall about a year ago she hugged and kissed me on the cheek....well she had eaten something with corn or drank a soda cause I ended up with a red rash in a lip imprint on my cheek bit amusing story for you.   I did a post earlier about where to bulk buy foil sheets, and freezer paper online from my supplier for my bakery I will update this later today with links for you. Buy in industrial rolls and they last you 4-6months
       
    • FYI newly diagnosed should not have oats right away. 
    • You may want to ask your doctor for a celiac panel. That would be a good start. The biopsy needs to be done next to an active lesion and they need to be looking for DH.  Unfortunately it can take a while for DH to be diagnosed because many doctors are not very knowledgeable in the skin form of celiac. Keep eating gluten until all celiac related testing is done. Then you can try the diet if the doctors haven't been able to figure things out or won't test properly.  It can take some time for DH to resolve so you might not notice a difference right away and folks with DH tend to be very sensitive to even small amounts of gluten so you must be very strict. Hope you get some relief soon as I know how miserable the rash can be.
    • Take the opportunity to get healthy!    Nuts, seeds, fruits, take these as snacks on your drive. I personally love almonds and pumpkin seeds. Or bananas and blueberries. Or if you need protein there's lots of gluten free protein bars at gas stations. I like to pack hard boiled eggs too.  One thing I do for long trips is I make sort of a granola/protein bar at home and take it with me.    1 cup oats 3 eggs two spoonfuls of peanut butter some cinnamon and a banana.   mash it all together and bake it like a cake for about 20 minutes. Chop em up into little bars and bag em for your trip. just get creative and try new things! 
    • I totally understand.    Ive noticed the same thing when I started really ramping up my fitness program.    To start, cut out the 30 day challenges. If your serious about fitness, you will incorporate it as a normal entity of life. We already have compromised immune systems so putting sudden outbursts (or challenges) of stress on it will only make you more susceptible to pathogens and ultimately, get you sick.    Take a week, only stretch, light cardio, very light strength training, and lots of rest. Next week, add a little more. Show your body that you can handle it, but do it push it by any means. This new training regime is forever, it's your lifestyle. Take it easy, and play it smart. Slowly add more intense training over time... slowly. Get to a point where you feel your nutrition and fitness needs are being satisfied, and you're productively making differences.   i personally work out 3-4 days a week. But if I go too hard, I get sick. Then I get frustrated that I can't exercise, I work out anyway, and get even more sick. It's just not smart. So I stopped that. I have respect for my immune system and its limits. I took it very slow, and increased my intensity over time. Now I'm at that golden point in my life where everything is balanced. Progress (in terms of personal aesthetics for myself and my interests) is slow, but it's progress. And it's a hell of a lot better than the go hard and get sick cycle.   Best of luck to you friend! I'm sure you will find your way! Learn your body. Know that you are strong, you are powerful, you just have to play it smart. 
  • Upcoming Events