Celiac disease is more common than you think

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.

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.

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!

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!

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!

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.

Rita, 13 year old daughter, Bay Area, 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.

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.

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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.