Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Did You Know Someone With Celiac


carriecraig

Recommended Posts

carriecraig Enthusiast

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...


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



dlp252 Apprentice

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.

happygirl Collaborator

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.

nikki-uk Enthusiast

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:

jerseyangel Proficient

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.

CMCM Rising Star

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. <_<

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jenvan Collaborator

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...

Susan123 Rookie

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

StrongerToday Enthusiast

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.

mookie03 Contributor

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!

hlm34 Apprentice

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.

luvs2eat Collaborator

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!!

Rusla Enthusiast

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.

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.

chrissy Collaborator

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

kevsmom Contributor

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

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,904
    • Most Online (within 30 mins)
      7,748

    AnneSN
    Newest Member
    AnneSN
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Xravith
      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.