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Did You Know Someone With Celiac


carriecraig

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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...


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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


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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

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    • xxnonamexx
      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
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      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
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