Celiac disease is more common than you think

Do you have celiac disease?

Could you or your child have celiac disease?

These are the stories of celiac disease:

“…(she) started to complain of tummy aches often.  Sometimes she would get them a few days in a row, then sometimes we wouldn’t hear about them for weeks.”

“…when I first started having the mysterious and very itchy rash.”

“Her symptoms were stomach aches, although not as bad as some people get.  But when she sat out of rehearsals, we knew it was serious.”

“He had fallen off his growth chart but is back on it since going gluten free.”

“And even though I had seen at least 5 neurological and dermatology specialists, I was not initially diagnosed by a clinician– my cousin had a friend w celiac and she ‘diagnosed’ me.”

“She was waking 2 or 3 times per night to go to the bathroom, feeling nauseous.”

“She would occasionally complain of a stomach ache but it never lasted very long. She was very, very tired for an 11 year old.”

“For several months she had had joint pain, chest pain, headaches, stomachaches, and was exhausted all the time. We went to the doctor several times. The first time she attributed it all to “stress” – but what does a 4 year old in a stable family and great preschool have to be stressed about?”

“When we took her back to the pediatrician for the fifth or sixth visit since she’d started ailing, the pediatrician said she now thought our daughter had a brain tumor, and she advised us to see a pediatric neurologist.”


A decade ago, many people had never heard of celiac disease. If they did, they associated it with people who get extremely sick when they ingest gluten. The problem is that celiac disease has over 300 symptoms, many of which are not associated with gastrointestinal ones. When those with celiac disease ingest gluten the side effects can range from debilitating pain and gastric distress to NOTHING. Many people don’t realize that celiac disease is more common than you think.

According to the National Foundation for Celiac Awareness:

“One person might have diarrhea and abdominal pain, while another person has irritability or depression. Some patients develop celiac symptoms early in life, while others feel healthy far into adulthood. Some people with celiac disease have no signs or symptoms.

These differences can make celiac diagnosis extremely difficult, resulting in 83% of people with celiac disease undiagnosed or misdiagnosed with other conditions.”

As part of Celiac Disease Awareness Month, I’ve collected a variety of stories from my faithful followers whom have very kindly offered to contribute. Be careful; some of these may make you tear up. The hope is that you, as someone who doesn’t have celiac disease, will read it and think twice before saying “I don’t have celiac disease” or “I can’t have celiac disease; my symptoms aren’t that severe” (like I used to say). Please leave a comment and let me know what you think or if you have positive advice for anyone, please share that as well.


Layla, 5 years old, from Bay Area, CA (as told by her mom)

Did you know about the disease before?  Nothing at all.  Hardly even knew what gluten was.
Does anyone in the family have it?  No.  I got tested, as well as her dad and brother.  All negative.
How did you find out?  In Spring 2014 Layla started to complain of tummy aches often.  Sometimes she would get them a few days in a row, then sometimes we wouldn’t hear about them for weeks.  I tried to figure out in my head if there was something she was eating that was causing this, but I couldn’t figure it out.  Gluten was not even a thought.
In Fall 2014, she started Kindergarten.  Within the first few weeks of school, she had visited the nurses office a couple times, complaining of a stomach ache.  We thought it might be anxiety or being home sick, and sent her back to class.  Finally, around the 3rd or 4th time in the nurses office, my husband suggested we talk to the doctor.  I emailed her doctor at KP and she suggested blood tests to make sure she didn’t have a stomach bacteria, plus she added the ones for Celiac.  Again, I didn’t even consider celiac or a gluten allergy.  But slowly the test results all came back and most came back normal…until the final two, which diagnosed Layla with Celiac disease.  One week later she had an endoscopy and one week after that they confirmed the diagnosis.   After I started learning about celiac, I realized that the joint pain she used to experience in the middle of the night was also probably related to it.
What symptoms does your daughter have now (if any) if glutened?  To be honest, since she has been off gluten either she has never been glutened or she does not get any symptoms if she does have gluten or cross contamination.
What has been the biggest challenge?   Cooking at home has been easy.  I found pastas, sauces, breads, waffles, cereals, etc that are very good.  It is going out that is hard.  Going to visit friends or family and having to prep them about Layla is hard.  Depending on who it is or where we are going, I may notify them ahead of time or just take food for her.  Since she is 5 years old, it sometimes makes her sad that I take food for her but overall she is a pretty tough girl.  Restaurants are also hard bc we can’t go to most places and I am always nervous about cross contamination.  I am hesitant to go on vacations bc being out of our comfort zone and having to find places to eat scares me.  I know it will get easier with time, but it has only been 6 months.
Lisa, Mansfield, TX
I’m going to guess I was born with the gene but it wasn’t activated until my first son (almost 24) was born. That’s when I first started having the mysterious and very itchy rash. Saw a dermatologist who kept waffling between thinking it was eczema or psoriasis, but just treated with strong topical steroids. It would go away but always came back. And then I started having trouble with anemia. Was referred to a hemotologist who did extensive blood studies and finally decided I just was iron-deficit anemic because of a non-stop, albeit, light menstrual period. So had an endometrial ablation in 2006. A year later was still anemic, so had to have an IV iron infusion. And then a couple of years later started having the GI symptoms. I also was diagnosed with Sjogren’s Syndrome back in the early 2000’s, which is an auto-immune disorder that causes inflammation in the moisture-producing glands of the body, which primarily affects the eyes and mouth. In 2012, I nearly lost both of my corneas due to extensive damage from severely dry eyes. I decided to see my rheumatologist about the Sjogren’s to see if there were any new medications that might help my eyes. She’s the one who suspected the Celiac’s when the blood tests she ran came back showing no measurable amounts of iron in my blood. And that’s when I was finally referred to a GI doctor.
Within a week of going gluten free, my severe acid reflux was gone, and so was my insomnia. At my 3 month blood test, I had begun to absorb iron, so my body was beginning to make red blood cells again. At 6 months, I had my first red blood cell count that was in the “normal” range on its own in 20 years.
It’s been 2.5 years since my diagnosis, and while I still have trouble with my eyes, I no longer have to wear moisture goggles, so I think the Sjogren’s was actually a by-product of the undiagnosed Celiac’s, and as my body can now absorb nutrients, it is healing itself. There is 20+ years of damage to undo, so I think it’s a slow process. But my eldest daughter tells me I am night and day different in my energy level now. I still get tired. But I feel so much better. It is weird, though, to eat out or eat with other people. I purposefully tell my server, “I have to order gluten free,” so it’s just not just some diva diet craze. Or, I’m at an office birthday party, and once again, have to decline the cake. The last one was an ice cream cake, and people were like, “Can’t you just eat the ice cream?” No, I can’t. All-in-all, though, so much better.
Sara, 10, Bay Area, CA
From her dad: My daughter Sara was diagnosed just before Thanksgiving last year.  Her symptoms were stomach aches, although not as bad as some people get.  But when she sat out of rehearsals, we knew it was serious.
Sara: I had no idea about gluten free things or celiac disease, and I don’t think my parents knew about it either. It all started in early November.  After dinner almost every night (when I was supposed to be in bed), I went into my parents room and asked for a Tums.  At first, they thought I was just trying to stay up late.  Their thinking changed when I started to sit out from dance class, and sit out of theater rehearsals.  My parents talked to my doctor and started to make things gluten free.  They hadn’t told me yet. Slowly, they talked about it with me.  I was pretty upset when I heard that I couldn’t eat cake and cookies, but then I found wonderful cookies and cupcakes and things that are even better than regular treats (in my opinion)!  Although I can no longer have special treats at birthdays and things, I can always find time to talk about it with my friends.  After I stopped eating gluten, not only did I no longer have stomachaches, but I also could remember things better!
Beth, 12 year old son, Chicago, IL
My son has type one diabetes and we only found out about the celiac from a blood test. No real symptoms that we were aware of –though in retrospect there was significant weight loss that we attributed to the diabetes. He had fallen off his growth chart but is back on it since going gluten free.
Because he hasn’t had symptoms, we don’t know if he has been glutened. I do worry about it–our kitchen is now gluten free, but he eats at friends’ houses that aren’t and we also still go to restaurants. He has been gluten free since October, and we were hoping to find out at his 3-month GI checkup that the blood tests were all good and our level of vigilance was sufficient. Unfortunately one of his original blood tests hadn’t been done to the degree of detail needed to know if there was sufficient improvement (because he was still higher than should be) so I don’t have total peace of mind yet that he is not getting glutened. At his next appointment they will be able to test against the 3-month numbers which were done correctly so that we will be able to know better. I’m hopeful they will say whatever we are doing is good enough and not that we have to stop eating out of our kitchen at all!
Alison
I not sure how “unique” my story is… I probably went about 20 years w symptoms (mostly migraines and DH rash) as well as prolonged anemia, but no severe GI symptoms before finally being diagnosed. And even though I had seen at least 5 neurological and dermatology specialists, I was not initially diagnosed by a clinician– my cousin had a friend w celiac and she “diagnosed” me. When I approached my Primary care doc for testing she “never thought I would’ve had celiac” and was shocked when the tests were positive.
Hmmm it’s really difficult for me to tell if I’ve been “glutened”. In the five years since diagnosis twice I’ve had pretty severe diarrhea for a couple days but that could have also possibly been some kind of food poisoning. I know there’s been a few times I’ve eaten small amounts (like after the fact I find out my friend mistakenly put some soy sauce in a pot of soup) and haven’t had much of a reaction. Sometimes the DH rash will re-appear on my elbows or I’ll get a migraine but I haven’t been able to discern a noticeable pattern/timeline and often am unable to figure out the “source”. I think perhaps sometimes for me it’s an additive exposure- if I eat out multiple times a week and I don’t eat any real gluten items but there’s small amounts on cross contamination that if I’m exposed several times I’ll react by rash or headache.(?) But I’m not certain on this!
“A”, 16, Palo Alto, CA (as told by her mother)
My daughter “A” was 9 years old when she got a bad stomach virus. It was going around the school, so we figured she’d just get over it and be fine. She did get mostly better, but then relapsed. She was waking 2 or 3 times per night to go to the bathroom, feeling nauseous. During several weeks of this, we went back to our pediatrician a couple times, who ordered a battery of tests which included a celiac panel. At that time celiac testing was not always considered for these symptoms, however the doctor reasoned that with A’s Irish heritage, she was more at risk for celiac. Note that this is not actually true — celiac is no longer thought to be more prevalent in certain ethnicities, but at that time this is what our doctor had heard. We were fortunate that she decided to send celiac testing as A’s TTG was off the charts high. By that time A had been suffering for at least a couple months, so we were all relieved to have a likely diagnosis with some hope for relief. She was referred to a GI doctor for evaluation, and he did an endoscopic duodenal biopsy. The results were classic for celiac — lots of damaged villi were found. We were then referred to a nutritionist for assistance with a gluten-free diet. Note that no one else in our families had been diagnosed with celiac (still true today), and this was something we did not know much about. Having no family history of celiac is actually pretty common for those with celiac.

The next 3-6 months were very difficult as we tried to figure out how to manage the GF diet and also raise A’s flagging spirits. She was depressed and anxious from being ill for so long, and now she had to deal with a difficult diet which comes with social issues as well. We were sad for her as well. It was very common at her school for parents to bring in cupcakes for birthdays, pizza for celebrations, and such. She had to quickly learn to say no, and we had to do lots of education of teachers and other parents. It took over a month for her to start to feel better, and about 6 months to become normal again. Her TTG didn’t normalize for about a year. Her spirits also recovered, but that took about a year.
She is now 16 and doing very well. She has only made a few mistakes with gluten, and depending upon how much she ate, her symptoms varied from mild stomach upset to several days of diarrhea and exhaustion without much sleep. She knows she can’t cheat without consequences. She manages the social side of this with grace and she doesn’t let it get her down. Meanwhile, it’s been wonderful to see how much society has changed in its understanding of celiac, leading to more GF meals, pizza, products, and acceptance overall of this dietary restriction. We no longer have to launch an education session for her teachers each year, and she can handle explanations on her own if needed. We have always provided her with food and treats she can eat and we never expect others to do that for her, but we are often pleasantly surprised at how others will try to accommodate her. We often provide GF treats for entire classes which have been well received. There are always some people who don’t get it or don’t care to try, but for the most part celiac is not a cause for problems in A’s life or in ours.
Rita, 13 year old daughter, Bay Area, CA 

My daughter, Marina, was diagnosed with celiac disease just a few months before her 11th birthday. She would occasionally complain of a stomach ache but it never lasted very long. She was very, very tired for an 11 year old. She would go to bed (without any encouragement) at 7:30pm and wake up at 7am and say that she was very tired when she woke up. We couldn’t figure out how a child could be so tired all the time. During the day Marina was often yawning, struggling to stay alert and active. Once in a while Marina would also mention that her knees (joint pain). She was also somewhat “grumpy” but we chalked that up to her personality and fatigue. The only symptom that was really persistent was her fatigue. Doctors thought she was anemic or had an issue with her thyroid but she was tested and these weren’t the culprits.
At a routine check-up, Marina’s pediatrician looked carefully at Marina’s growth curves (both weight and height) and said that she was concerned that Marina was “falling off the growth curve”. She said that something was not right and that Marina ought to be tested for celiac disease. The combination of slowed growth/failure to thrive and Marina’s fatigue gave her reason to suspect that it was celiac disease. We had Marina’s blood tested and she tested positive for various markers. Then she had a biopsy of her small intestine at Lucille Packard Children’s Hospital and the GI doc said that she had celiac disease, no doubt about it. My husband and I were very surprised as we did not related Marina’s symptoms to what is commonly considered for celiac. I am 100% Italian, we make our own pasta and gnocchi at home and this was quite a surprise to all of us.
Now 2 years later, Marina is 13 and doing really well. She is cheerful, rarely tired and enjoys staying up late at night (even way past her bedtime). She has started growing and developing appropriately for her age and she grew nearly 3 inches in the past year! Her focus at school is fantastic and she is an excellent student.
We were all gene tested for celiac and my husband and both daughters have tested positive for the gene. I’m the only one in the family who does not have the gene. Our youngest daughter has no signs of celiac yet but she also eats a 90% gluten free diet. We are 99.9% GF at home as it’s just easier for us to manage. We make gf gnocchi, pasta and all of our favorite recipes. We are also very fond of your cookbook and use it frequently!
We believe that there are other family members who have CD but they refuse to be tested.
We are so grateful for our pediatrician, who just retired from PAMF in April of this year. She diagnosed Marina fairly quickly (we had only been seeing her for 8 months or so, having just moved back to the Bay Area from Chicago) using growth curves from Marina’s pediatric visits in Chicago.
Marina’s baby teeth still have not completely fallen out and her pediatrician and dentist believe that CD has had an impact on this too. Marina is doing really well. She is very, very compliant and, in spite of all the challenges of early teen years, she has had a mature perspective and is learning how to advocate for herself in tricky situations. She’s also participating in a clinical study with Stanford Hospital on teens with CD and how they use and respond to text messages for the management of CD.
When Marina gets gluten, nothing really happens at all. She might feel a little more tired that evening. Of course, she is super careful so probably isn’t getting more gluten then would come in cross-contamination from eating out (which we only do occasionally and are selective). There was one incident in 6th grade where she thought she was eating a GF tart that she baked but it turned out that the teacher had given her the non-GF tart to sample and she didn’t know it. That evening she seemed more tired than usual but other than that, there are no symptoms. I’m sure this is better than having a terrible stomach for days and days but it is concerning to us that we really don’t know if she’s getting gluten from her symptoms. That said, her blood is back to normal and she feels great so we’re not concerned.
Lisa, 10 year old daughter, Piedmont, CA 
My daughter, Julia, was diagnosed with CD when she was 4 years old. She is now almost 10. For several months she had had joint pain, chest pain, headaches, stomachaches, and was exhausted all the time. We went to the doctor several times. The first time she attributed it all to “stress” – but what does a 4 year old in a stable family and great preschool have to be stressed about? We kept going back. The doctor did a blood test for everything possible – leukemia, everything. It came back positive for CD. She then had an endoscopy and small intestine biopsy to confirm it. After she went gluten-free it took several weeks for her symptoms to subside.  No one in our immediate family has CD. Rumor is that a great-uncle had it as a baby, but that he grew out of it (this was in the 1940s), so I doubt it was actually CD. When she gets glutened not much happens – maybe a stomachache and some bloating. But I can count on one hand the times she’s had gluten since the diagnosis, each time only a tiny bit, so we don’t really know what would happen if she had a lot. She is amazing about staying gluten-free and checking ingredients before she eats anything. It’s hard for her sometimes, not to be able to have everything the other kids have, and to have to think about it and plan for it all the time, but she knows it’s important, and she is very responsible about it. We are very proud of her.
Lisa, San Francisco

Shortly after I weaned my daughter, when she was about 15 months old, she started vomiting after eating food or drinking a bottle of milk. The pediatrician diagnosed her with a bad cold and bronchitis, on the theory that she was coughing so hard it was making her throw up. My husband and I thought it was dietary related, and a friend who has celiac disease recommended we get her tested. But when we tried to get an appointment with a pediatric gastroenterologist, the wait was eight months unless our pediatrician called saying that it was an emergency. The pediatrician pointed out that our daughter had been growing well up to that point, and she claimed that celiac disease is extremely rare in the United States. We couldn’t get the GI appointment.

Six months passed during which our daughter lost almost 20 percent of her body weight, severely declined in fine and gross motor skills, stopped talking except to use baby signs, and regressed to the point where she just wanted to sit on my lap and watch other children play. When we took her back to the pediatrician for the fifth or sixth visit since she’d started ailing, the pediatrician said she now thought our daughter had a brain tumor, and she advised us to see a pediatric neurologist.

I’m guessing being told your daughter may have a brain tumor is about the scariest thing a parent can be told. In our case, it turned out to be a blessing in disguise. First, the neurologist’s receptionist got us in to see the doctor immediately, and second, the doctor, Luis Bello-Espinoza, observed our daughter for about 45 minutes and then said, “I don’t think she has a brain tumor. I think she has celiac disease.”

I may have been the only parent to laugh out loud upon having been given such a diagnosis. Dr. Bello-Espinoza and I went through the symptoms together: frequent vomiting (check), loose and smelly stools (check), weight loss (check), apathy and general failure to thrive (check, check).

Once we started feeding our daughter gluten free food, she ate like a ravenous rabbit. For the next year or so she was insatiable, eating six or seven meals a day. She quickly regained her body weight and now, at 15 and six feet tall, you’d never guess she was a sickly toddler.

Since my daughter’s diagnosis I found out that I have celiac disease too, which is really strange because I have had exactly zero symptoms my entire life, including during the year I lived in Italy and ate pizza and pasta twice daily. When the gastroenterologist called to tell me the endoscopy was positive, I caught myself saying, “Nooo,” so certain had I been that the test would be negative. (My blood test was positive too, but I had thought the lab switched my daughter’s blood sample with mine; that’s how deeply I was in denial.) Perhaps I developed the disease relatively close to the time I was diagnosed, maybe as a result of late in life pregnancies. Now when I accidentally ingest gluten, however, I get intense migraine headaches.

After I was diagnosed, my sister got tested and found out that she has it, which explains the year in high school when she went from being voluptuous to appearing and acting anorexic/bulimic as well as her poor tooth enamel, chronic stomach aches, osteopenia, and infertility. Amazingly, my sister, who had never been able to conceive, got pregnant within a year of going gluten free . . . and, at 44, became mother to a healthy baby boy. Surprise: he has celiac disease, too.

Finally, in the latest addition to our family saga–which was only figured out because my cousin told her doctor about our family history–my cousin discovered that the cause of the terrible aches and pains in her joints and extremities that kept her up at night was, you guessed it, celiac disease.


Thank you again to all who contributed to this post. It means a lot. Look for a second post with more stories.

To get more information about celiac disease, symptoms and testing, visit this link from my website.

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3 Responses to Celiac disease is more common than you think

  1. mlbatt@charter.net'
    Margaret May 22, 2015 at 12:54 pm #

    Elements of these stories mirror mine. We definitely have to be our own health advocates! I would like to connect with Lisa in Mansfield, TX. We live in the same town!

  2. Support@glutenfreefairygodmother.com'
    Maia Alpern May 28, 2015 at 7:37 am #

    Thank you Amy! Sharing our stories is a great way to spread awareness and hopefully get more people diagnosed and on the path to recovery. Looking forward to more stories. Maia Alpern, http://www.GlutenfreeFairyGodmother.com

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