Celiac awareness month is in May but really, it should be all year round. So many people still do not know about this disease which can affect everything from the brain to the skin. You can test negative for celiac disease and still have it (your antibodies may not have been elevated that day) or have what is called Non Celiac Gluten-Sensitivity or NCGS. For those with the latter, gluten affects them as much as someone with celiac disease.
I received so many stories from my last post that I decided to create celiac stories part two. Here are the next set of stories my followers and friends have graciously shared with me. I hope it helps at least a few of you out there.
Karen, Belmont, CA
When did you (or your child/family member) find out you had celiac disease?
Daughter Kristen, in 2008.
What were her symptoms?
Short Stature. Some stomach aches. Nothing consistent. Nothing that would have alarmed me to think there was something wrong.
How did you find out?
When Kristen was at her check up in 2006, she was on the smaller side of the growth chart (despite her 10 plus pound birth size). At this time the doctor felt she would be a “late bloomer” which made sense, since her parents were very late bloomers. At Kristen’s next check up two years later she had not gained any weight and grew nothing in size. The doctor suggested a blood test for celiac disease, based solely on her short stature. The blood test was positive and was confirmed by an endoscopy performed by a pediatric gastroenterologist. Kristen was 11 years old.
Does anyone else in your family have celiac disease? If yes, was this before or after your diagnosis?
Yes, Kristen’s brother. We found out after Kristen was diagnosed and since then all family members have been tested. Daniel was diagnosed very early and had only the very beginning of villi damage at 7 years old.
What happens when he/she gets glutened?
Brain Fog. Some stomach aches. Mostly fog though for Kristen. Daniel gets stomach aches with some loose bowel movements.
It took years of being gluten free for Kristen to recover. Her inability to grow was due to her malnutrition and her villi being scalloped. Her bone age at the time of diagnosis was 4 plus years less than her chronological age. We had dexa scans, bone age tests routinely, and labs as well. We were followed by a pediatric gastroenterolgist who wanted to give Kristen growth hormones every single visit. We declined the hormones (for a few good reasons) though it was really difficult for Kristen, who was teased due to her small size. In the end, Kristen won without hormones. When she turned 16, she caught up in size. She also had delayed puberty.
It all started the summer before my 8th grade year started. I had recently been through tons of stress and a horrible 7th grade year. My body was changing and in a period of so many transitions but I was still enjoying every food that came my way. Until one day I had a friend over and my mom ordered us pizza. I had been eating pizza my whole life so I ate and then we settled down to watch a movie we had rented. A little less then an hour later I knew something was wrong. I had never had so much pain, cramps, and stomach discomfort in my life. I had to secretly keep going to the bathroom (so my friend wouldn’t notice that there was a problem. Obviously 12 year old embarrassment!) I tried to calm myself, take some pepto, and just watch the movie but I was in so much tummy turmoil I had to tell my mom and make up an excuse to get my friend to leave. Thankfully she did and was none the wiser. After she left I slept through the rest of the day and night. That was the day I realized my body hated me. We thought I might have gotten heat exhaustion from being outside the whole morning in the sun, but after more days and weeks went by with similar episodes, we knew we had to act.
I had a friend who had been recently diagnosed with celiac disease and she told me my symptoms sounded like I could be a candidate. So the next step my family and I decided to take was to cut gluten from my diet. I would do anything to be able to eat again. So I began to transition all gluten products out of my diet and became vigilant about cross-contamination. Within a few weeks I started to feel better. I was actually able to eat without being sick or feeling much discomfort.
At this point I had already missed so much school from visiting doctors (who were no help) and being sick practically every day. The memories of eating a bagel and being doubled over in pain were still so fresh in my mind. I also began to think back to when I was younger and could pinpoint times when I would go out to eat or have dinner, or a big Italian feast at my grandmas and how sick I felt afterward. I was young and just thought I had an upset stomach so I never told my parents about these episodes. I discovered later that these had been foreshadowing events.
We went back to my gastro, after I had been gluten-free for about 3 months, and she wanted to do a biopsy of my small intestine to check for celiac disease. By that point it wouldn’t be 100 percent accurate since I had been gluten-free for those 3 months previous. However, I was put under for my first endoscopy and the results were that there was visible severe damage to my stomach and small intestine (indicative of celiac), which now looked to be healing. Small amounts of tissue were taken and sent to a pathologist, certifying a celiac diagnosis. By going gluten-free I was able to heal my body and actually eat again!
Being gluten-free comes naturally now, I know what I can eat and how to live. I hear and read so many stories of people struggling with transitioning and living gluten-free. Maybe it is because many don’t expect the diagnosis. But I know for me it was a blessing.
13-year-old boy, San Francisco Bay Area:
I always felt like I have gotten sick easier than other kids, but about a year and a half ago I started feeling sick to my stomach at least one day every week. Slowly, the stomach aches occurred more often, and eventually I never felt good enough to do anything. I was very tired all the time, I felt weak, and I was losing weight. I also got painful white spots on my tongue. I tried probiotics, which helped my tongue, but not my stomach.
By last summer my anxiety started. I had major anxiety about almost everything I did as well as my health. I never felt well, didn’t want to eat, and continued to lose weight. My doctors treated me like I had an eating disorder. After a few months of eating a diet very high in calories, I was still not feeling well and not gaining a significant amount of weight. I was anemic, low in vitamin D, and dehydrated most of the time. One of my doctors did an initial screen for celiac disease that came back inconclusive. Luckily that doctor referred me to the GI clinic anyway, I went through additional testing, including an endoscopy, and was confirmed to have celiac disease.
It has been almost 6 months since I was diagnosed and been gluten free, and I feel more than 90% better. I have a lot more energy and I have gained weight. My stomach still bothers me, but it only occurs once or twice a month. The hardest part is trying to find gluten-free food. We have found that even restaurants that say they can do gluten free aren’t usually gluten free enough to keep me from getting sick. So I am learning to take food with me wherever I go.
If you show any of these symptoms ask your doctor if you can get tested for celiac, because many will not ask you.
Jean, Sunnyvale, CA
Symptoms: recurrent miscarriages (5 in 3 years), chronic GI distress, waking up anxious and rushing to the bathroom every morning, rash on elbows and buttocks (for decades), foggy head most of the time, lots of mucus on my tongue/in saliva, fine/easy to break hair. My mom now tells me when I was an infant I always threw up wheat cereal – everything else I could eat fine but she kept feeding me the wheat cereal (advice back in the late ’60s) until I “grew out of it.” All of the symptoms are gone after going gluten free (took about 6 months – had to also go dairy free for the first 3 months).
After going gluten-free for a month I went to HealthNow trying to get an official diagnosis (I had no idea I was supposed to get tested first). I tried a 2 week gluten challenge and blood work showed raised antibodies but not at the positive range for celiac. I then went to a gastroenterologist who did an endoscopy and found severe inflammation of the small intestine but not flattened villi. So while I didn’t receive an official celiac diagnosis, if I ingested one crumb of gluten I’d be miserable for 3 days (starting with severe gastrointestinal symptoms 30 minutes after eating). I also had an unexplained positive anti-nuclear antibody test for a couple of years which kept going higher. I tested it again 3 months after going gluten-free and it is and remains negative.
Nine months after going gluten free I was pregnant again (#6) – for the first time ever the ultrasound matched the gestation time – all the other times there was retarded growth and even after 2 pregnancies with a heartbeat I lost them at 10-13 weeks. This time I lost #6 at 12 weeks and was devastated. At this point I had just turned 40 and had it tested – down’s syndrome. So now my body was healed but my eggs sucked. I did 1 round of IVF which also failed. We were ready to try IVF again but got pregnant naturally the month after the failed IVF. My daughter (very healthy, now 5 1/2) was born after a very normal healthy pregnancy. Had I not discovered gluten was making me sick, she would not exist.
What amazes me is that looking back through my life (growing up in the ’70s & ’80s) I actually avoided gluten until I graduated from high school. I always wanted oatmeal cereals, oatmeal cookies, corn chips and so forth. In college and after graduation I started to eat a lot of pasta and whole wheat bread, gained a ton of weight, and felt crappy most of the time. I used to always get diarrhea and stomach cramps when working out so I stopped eating in the mornings before a workout – even when training for a marathon and 1/2 ironmans. Now I realize it was the bagels and cereal that were causing the distress. Now I can actually eat something an hour or two before a workout without worrying about doubling over in the street in pain begging the homeowner whose yard I collapsed in to please let me use the bathroom (they always said no, I would too.)
I find it so frustrating that so many of us have had such painful journeys to get to something that could be resolved with a change in diet.
Alison, San Jose, CA
We discovered that Michael, now 17, had celiac disease when he underwent a routine test for it when he was diagnosed with Type 1 diabetes at age 12. The test results didn’t come back immediately and were therefore overlooked by the doctors for 6 months, at which time they ran the blood tests again and recommended a biopsy, which was also positive. In a way, I was glad we didn’t get the diagnosis at the same time as the diabetes diagnosis because I’m afraid it would have been too much to deal with at once. Michael says that he didn’t have any symptoms of celiac prior to diagnosis, but I’m not so sure that’s true. In hindsight, there were a couple of instances of severe stomach pain in the months prior to diagnosis and he also used to get an intermittent rash, which may or may not have been related to celiac, although I suspect it was because he no longer gets the rash after going gluten-free. He also had a long episode of diarrhea as a baby, the cause for which was never determined, although he was not tested for celiac at the time. Michael does not seem to be terribly sensitive to gluten. Since diagnosis, he’s only had a couple episodes of bloating and gas due to probable cross-contamination. I had also noticed that Michael’s growth had slowed down, but it was never a real concern since he’s always been tall for his age. You can really see the dip on his growth charts though where he falls off his curve and gets back on it after going gluten-free.
It’s just my gut feeling, but I suspect that he had celiac disease prior to the diabetes diagnosis and and perhaps triggered the type 1 diabetes. It’s something we’ll never know for sure. It would be great if kids were routinely tested for celiac disease since it often goes undetected for so long due to differing and complicated symptoms (or none at all). We did have our entire family tested for celiac upon Michael’s diagnosis and none of the rest of us has it. There is no other history of either celiac or type 1 diabetes in the extended families.
Maia, El Cerrito, CA
I was diagnosed with celiac disease at the age of 50. Unfortunately, this was after many decades of damage. In hindsight, I had probably already manifested the disease by the age of 2. I had severe sinus congestion from a very early age. Then allergies and severe depression by the age of 5 or 6, nosebleeds and severe headaches every day for many years. And I was always overweight, which ran contrary to the belief that you must be severely underweight to have celiac disease. I was also very embarrassed by the little red raised bumps on my upper arms and thighs and I had light sensitivity that would make me sneeze when first going outdoors.
I also had chronic constipation rather than diarrhea as another symptom. Later, I had severe cramping and lengthy bleeding from age 10 during my menstrual cycles and had several miscarriages.
It wasn’t until I was completely bedridden due to pain and inflammation that I was finally diagnosed with celiac disease. By this time I had suffered for decades and had been diagnosed with asthma, Hashimoto’s thyroiditis, diabetes, rheumatoid arthritis, fibromyalgia, osteopenia, psoriasis, and still could not lose weight no matter what diet I tried.
In hindsight, I would guess that both my mother and brother had celiac disease too, though both passed away before being diagnosed. And possibly my mother’s sister. When early symptoms are missed the damage goes deeper and is progressive so accurate testing is vital by a healthcare provider who understands this as many people receive false negatives on their tests.
I have been strictly gluten free since 2005 and very rarely have an accident. When I do, my reactions emerge predictably. One and a half hours after ingestion I have severe stomach cramping and diarrhea four hours until the gluten is out of my body. I then feel very weak and brain foggy for days.
I hope my story will help others realize the importance of early diagnosis and sticking to a gluten free diet. I am so grateful to not need a wheelchair anymore that there is no way I will ever intentionally eat gluten. Remember a lifelong gluten-free diet is the only treatment for celiac disease even if you don’t have visible reactions.
Andrea, Los Altos, CA
When did you find out you had celiac disease?
I found out when I was 35, a few months after I gave birth to my first child.
What were your symptoms?
How did you find out?
Doctor was trying to diagnose something else and threw in a ton of blood tests including celiac disease. The celiac test came back positive, but was not the cause of the other problem at the time.
I did not go gluten free for another 4.5 years since I felt fine. In fact my doctor at the time supported that. However, once I moved to California and got a more informed doctor, I was finally convinced to go gluten free. (“Even if you didn’t feel heart disease, you would still treat it!”) I also thought maybe I had symptoms and I didn’t even know and I would feel better after going gluten free, but no dice.
Does anyone else in your family have celiac disease?
I have the gene for celiac, but no relative has the disease. My daughter also has the gene but has yet to develop the disease.
What happens when you get glutened?
Unfortunately, I am now sensitive to gluten. When I get glutened, it is like food poisoning but resolves within 4 to 6 hours.
I bring up asymptomatic celiac a lot since I don’t think doctors are even aware that it can happen. I read that a high percentage of women with fertility issues have undiagnosed celiac.
Louise, San Francisco Bay Area
My son was diagnosed with celiac in the spring of 2013 at the age of 12. His celiac disease may have been triggered by a virus which also gave him something called POTS (Postural, Orthostatic, Tachycardia Syndrome) or dysautonomia. There seems a lot of overlap of children with POTS and children with celiac disease.
Two years ago our family traveled to Costa Rica. My son and all our family caught a stomach bug but my son then experienced a period of extreme fatigue which lasted about two months. While he was experiencing the fatigue he was tested for a variety of parasites and exotic infectious diseases as well as mono but all tests were negative. About 8 months after the stomach bug, he started missing school 2 or 3 days per week due to stomachaches, diarrhea, vomiting, nausea, headaches, exhaustion and feeling cold. The problem was that the POTS gave him a lot of the exhaustion/low temperature symptoms but the nausea, etc kept recurring. Many times we took him to the doctor and she just assumed that he had “schoolitis” or a stomach virus. I stopped taking him to the doctor unless he was sick for 3 or more days. Eventually, I started analyzing his absences and his symptoms. The next time he was sick I brought our pediatrician a list of the dates and symptoms. She agreed that it sounded like something “systemic” but wanted to wait to do blood tests until he felt better. Meanwhile she wanted a stool sample. I had taken him to the doctor at that time due to 3 days of diarrhea. The doctor recommended the bread, banana, rice diet. His symptoms changed from diarrhea to vomiting and he could not keep any food down. Although the doctor wanted yet another stool sample he was not eating and not producing any stool – I called to ask for the bloodwork instead. I had specifically asked for her to include the celiac test – since his grandmother had celiac also. Our doctor seemed surprised that the celiac test came back positive. In fact, another doctor at the office later questioned us about whether he really had celiac, but it was confirmed by biopsy.
Although my son went on the gluten free diet, his symptoms did not resolve. He had an endoscopy which confirmed celiac and no ulcers or anything else, so we waited for him to get better. He got glutened twice over the summer. Once he ate some teriaki beef jerky which had soy sauce in it. He had a stomachache that lasted several days and began struggling with fatigue again. He seemed to get better from that, but got glutened again by eating tortilla chips at Rubios – which are fried on site in the same frier as churros, etc. Then he got another really bad stomachache which lasted about 2 weeks but started the extreme fatigue again. We discovered that he had been exposed to mono some time in the late spring or summer, but his symptoms did not look like mono. It took us a while to get the diagnosis of POTS and get him on the road to recovery. He missed 8 months of school and had debilitating exhaustion caused by low blood pressure, etc. Some medication coupled with a very specific physical therapy program is bringing him back to normal and he has returned to school.