(Scroll past pictures for individual stories.)
Celiac disease affects at least 1 in every 133 of us. Actually, this comes from a study released by the NIH in 2003 that stated that 1:133 not at risk have celiac. Numbers go way up for those at risk. For direct relatives of someone with diagnosed celiac, 1:22, 2nd degree relatives, 1:39 and for those with symptoms, 1:56! So, as you can see, the statistics are much higher than 1:133. And even more are affected by gluten intolerance!
The sad fact remains that most with celiac or nonceliac gluten sensitivity don't yet know it, (although progress is being made). Read our stories below. Many of us suffered years (even a lifetime) of illness before discovering that a change in diet was all we needed. Please read - and share - and share some more (family, friends, school nurses, your doctor! . . . everyone and anyone.) Awareness is bringing answers more quickly, and when you read the kids' stories below you will know how important this awareness is; some just can't wait any longer.
These aren't rare stories. We are just the 'lucky' ones who finally received our answer. And as you read, you won't be able to help but notice that most of these diagnoses weren't initiated by the physician, rather through patient and parent persistence. Not all - but most! We NEED more routine testing and more understanding of the impact gluten can (and does) have on so many of us!! We NEED doctors to initiate celiac testing as one of the first tests run - not last. And we need them to be aware of the possibilities of illnesses (physical and mental) being connected to gluten intolerance (which doesn't show up on a test.) A negative test for celiac does not mean a person is not being affected by gluten.
Angela - My story: I had stomach issues most of my life from bloated belly to just constant pains. I went to the doctor a lot and there was "nothing wrong". As an adult I had joint pain as well fatigue. I eventually got very thin, threw up at least 5 times a day to where it became a normal thing because going to the doctor didn't produce any results and I felt they had me categorized as a hypochondriac. It wasn't until my daughter was around 18 months and I was on the floor playing with her and she pushed herself up from my stomach that the severe pain lasted 3 days. I was nauseous around food, and so thin you could count my ribs. The doctor sent me to a GI doctor who ended up doing an upper GI and colonoscopy. After the test the hospital proceeded to give me soda and crackers to settle my stomach. I was halfway home before I got sick from the crackers. In Feb 2005 I was diagnosed with celiac and have lived gluten free ever since.
Positive Response to Diet!
(because of mom's diligence !!)
Maya, age 5, is Angela's daughter. Mom shared the following: Maya has dealt with chronic constipation since starting solid food. I was told its ok to give her meralax daily to treat it but it never really worked. As a parent I didn't think it was normal for any child to be on meralax DAILY. She constantly complained about her stomach hurting and pain with BM. Finally we had a situation where she was doubled over in pain, crying and miserable. Her colon was severely compacted and nature was doing its thing. I googled constipation relating to celiac and read testimonies on how it's their child's only symptom. Right then and there I made the decision she was going gluten free until further notice. Two weeks later we had a wellness exam. We decide to draw blood for a variety of tests: celiac, ttg and others. She needed gluten in her system in order for the test to come back positive. She ate gluten and the complaints started up again and it hit to the point she was in so much pain I decided to have the blood drawn and put her back on a gluten free diet. Her tests all came back normal but I don't care because I knew she felt better on a gf diet. It only took about a week for her BM to become normal. And after about 2 weeks my daughter came up to me and asked if she could be gluten free forever. And as they say, the rest is history. A few months after going gluten free I was looking at Christmas pictures and Easter pictures and I couldn't believe the positive effects of going gf. She is no longer swollen / bloated and has lost 5 lbs and a pant size. To this day she is always questioning her food, making sure its gluten free. She knows the difference in how it makes her feel and wants to remain healthy.
(and the health that followed led to ambition
and motivation - and a new life.)
Rhiannon - The symptoms that I suffered before going on a gluten free diet were depression, anxiety, bloating, severe constipation (anywhere from 5-10 days without a bowel movement), lethargy, extreme nutrient deficiencies (my iron was so low that the doctors wanted to do a blood transfusion), hysterectomy at age 30, gall bladder removed at 22, arthritis by age 16. Hmmm, you name it, I dealt with it! Thank BOB that I didn't end up with cancer!
I lived 20 years of doctors telling me everything was in my head and then handed depression meds and meds for IBS. So, I used the elimination diet and self-diagnosed. Since I've been on the gluten free diet, I rarely ever get depressed and my anxiety attacks are about 1/10th of what they used to be! The constipation has gone away. I have more energy than I ever thought a person could have. I found motivation and a will to live because mine was all but gone in 2007! I went back to school, got an Associate's degree in business and went on to Culinary school. I now own my own dedicated gluten free bakery in Lincoln, NE and am constantly running my mouth about the miracle that is the gluten free diet! (Eazy Eatz Bakery, Lincoln NE)
Jacqui: Suffered from fibromyalgia, GI issues, ranging from constipation to diarrhea, gastroparesis in 2010, and spent eight months throwing everything back up. Didn't leave home except to go to the doctor for eight months. In desperation, I found a nutritionist that helped me. GI doctor had done countless tests. Biopsy did not show positive for celiac. But I went back to him about six months ago, and he diagnosed me with celiac because of the evidence from getting off of gluten. I dropped 90 pounds. Fibro symptoms went away! Praise God! Gastroparesis left! I had sought medical help for over 30 years! I've battled for decades trying to find the reason for depression, anxiety, heart palpitations...which they said was mitral valve prolapse...but a gluten free diet took that away too!
I got my life back! I now know I am also sensitive to egg, soy, and dairy.
I now get to spend my life mentoring hurting women, and making international mission trips.
or who are on the autism spectrum.
These pictures show Brandon at 3 years and then at 6 years. He is on the autism spectrum. Mom said a gluten free diet was behind "an amazing transformation". The puffiness around his eyes disappeared, he stopped spinning in place, brain fog cleared and he is now able to listen and follow simple instructions.
and Now - Healthy!
Anthony was a sickly child, visiting the pediatrician's office over 34 times in his first year of life. He broke his arm at 8 months, was hospitalized with pneumonia at 6 months and then again at 3 1/2. At 6 months old he weighed a whopping 21 pounds, then his growth was stunted. At 3 1/2 he only weighed 24 pounds. Every time he got sick with an upper respiratory infection he would vomit about once a day. He had the blood work for Celiac done at age 2 1/2 and it came back negative. The doctor treated him for cyclic vomiting and GERD. He actually went a stretch of 60 days one time vomiting once a day. He was life-flighted to Children's Hospital in Pittsburgh at 2 1/2 for pneumonia and a plural effusion. Sick, sick sick! He was always sick. Having Celiac myself my mother's instinct kicked in. Enough was enough. At his pediatrician appointment I tore off his shirt (when he looked like he did in the picture) and said, "I don't care what your blood work says....Look at him! Look at my child, he looks like a child with Celiac disease!"
So we then got our referral to a GI doctor.
Diagnosis still was not easy even though these doctors knew exactly what they were dealing with. The reason his blood work came back negative was because he has a rare IgA absence. A complete absence of the component of his blood that could tell us if he had celiac and the reason he was always sick! He was scheduled for the biopsy 3 times. The first two times he was too sick to go under anesthesia so the procedure was canceled. The second time we still drove the 2 hours knowing he was still probably too sick. My husband and I lost it. My husband is a mild mannered person but he started screaming at the nurses and doctors, "My son is going to die and no one is doing anything about it!" I was crying hysterically. The doctor sat us down and calmed us down and talked to us. He put him on some supplements and got us scheduled again pretty quickly. Before the procedure the doctor talked to us saying that we won't have any answers today because the biopsy had to go to a pathologist...yadda yadda yadda. When he came out from the procedure he said that "I am 100% sure you son has Celiac disease" and he was the worst case he has ever seen!!! and he's seen thousands. Finally! We got the answers we so desperately needed. I saw the worry in his face. So he got us some vitamins and supplements to get him feeling better and put some weight on my poor baby's body! I didn't sleep for 3 1/2 years! No lie. Every little cough we were at his side because we knew vomiting was a split second after. It was horrible. I am making it my life's mission to spread the word so that NO family has to go through what we went through. I am hoping to start my non-profit within the year.
Tasha: My 3 year old was diagnosed with celiac disease at 2 years old. She had always struggled with diarrhea, but then it became worse. She started having a sensitivity to milk...that turned into severe stomach pain after she drank it. Then the diarrhea got much worse...horrible mornings!!! Then she started randomly vomiting. The bloating in her belly turned her (belly button) from an outie into an innie. But after three doctors and numerous appointments, I was told that she just had toddler diarrhea syndrome. Toddler diarrhea syndrome?!?! So I looked this up...and the only symptom is unexplained diarrhea, but if the child had any of these other symptoms it could be crohns disease or celiac disease. So I researched it a bit and took her back to the doctor. They ordered the blood work and she was positive. They had to do a biopsy for a definitive answer...which was positive. But...before they did the biopsy we had to go another 2 months feeding her gluten or the biopsy could come back negative! Worst two months of my life! She had not eaten in over 14 hours when they went to do the biopsy and she still had undigested food in her tummy. A month after going gluten free and she no longer had an issue with milk. Diarrhea gone. Bloating gone. Horrible stomach pain gone. Much happier child.
and Gut Feeling
This is my daughter Abigale. (8) She has had stomach aches and chronic constipation since she started solid foods. When she was 2 she was diagnosed with encopresis (soiling caused by nerve damage from a stretched rectum and colon) and nerve damage to her bladder from being so impacted it pushed her bladder out of the way. After being told time and time again that she would outgrow it, 2 GIs and 7 years of adult doses of mirilax and weekend laxative cleanouts, I finally found a doctor that would do testing to see if there was an underlying cause. She underwent a NG tube hospital cleanout (pic on left) and had an upper and lower scope. The results showed that she had severe acid reflux, was lactose intolerant, and has the gene for Celiac disease, all of which she showed atypical symptoms for so no one wanted to test her. They couldn't fully diagnose her with celiac because her villi weren't damaged enough. So I could keep her on gluten for another 6 months and biopsy again or do a gluten free trial to see if it helped. Within 6 weeks (top right pic) of the trial she gained 8lbs that she needed, and the stomach aches were no more. Her appetite and energy improved greatly. Now 9 months later ( bottom right pic) she is happy and healthy. She still struggles with the side effects of the nerve damage, but is making progress. She may never be fully diagnosed, but I saw no reason to put her through all of that again when a simple diet change made a world of difference.
Click here for Trevor's story.
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this address: https://www.facebook.com/trevorceliac?fref=ts
Here is My Tommy's Celiac Story... Tommy was a happy, mostly healthy 1 1/2 yr old in June of last year when he got a mysterious illness that doctors insisted was related to a virus - for 1.5 months. Turns out it was Celiac, likely a rarer condition called Celiac Crisis. By August he could no longer walk, barely sit up - docs/hospitals told me to try & bulk him up ("let him eat a loaf of bread" was one suggestion). He ate constantly. He was literally starving but everything he ate went right through him. When I couldn't stand to watch him dying anymore, I gave up on the medical professionals and started my own research. I discovered Celiac symptoms online & saw the similarities. I changed his diet and he improved dramatically overnight. Turns out, doctors at the pediatric hospital had tested him for celiac, among other conditions, during our 3 day stay in July but somehow missed seeing the report with positive results (while telling me/my doc that all tests were negative). Tommy is very happy & healthy today. Turns out, celiac is an issue for many of us in this family - his diagnosis improved all of our lives. Awareness is the missing link for so many suffering undiagnosed with Celiac & I am committed to raising awareness however I can. No child (or adult) should suffer, no child should fail to thrive because of a grain of wheat.
We spent several days at a pediatric teaching hospital and saw a dozen docs. The GI specialist did not suspect any food-related issue and said she did not think testing was necessary. A non-gi doc told us she would order a celiac panel just in case. Our follow-up was with the ped-gi specialist & since she hadn't ordered the test, apparently neither she nor the chief of the dept looked at the results (while reporting to us that ALL tests were negative). Amazingly the results were easily accessed in his records when I came in after 1 week gluten free and he had improved; numbers were off charts. You can imagine how angry I was! My message is always follow instincts and be your own advocate - doctors do not know everything.
Breanna was fine up until the last day of Feb this year (she was 13 months old). She spent the day vomiting and then literally would just go on with what ever she was doing. This went on for a couple more days and included diarrhea. We made an appointment with our GP who told us that she was just teething, and she should be fine in a week or two. So we went home and Bree continued vomiting up to 4 times a day. She also sweated profusely, regardless of the room temperature. She became sad and irritable and lost her appetite. This pattern continued for the next few weeks, back and forth to the GP who then told me she had a Viral Infection and we just had to "wait it out" as they could not give anything for a viral infection. I even took her to the Emergency at our local hospital. They gave her an anti-nausea tablet and sent us home. At this point she was literally fading away before our eyes. She spent the days in my arms, or if I wasn't holding her she would just lay on the floor screaming. Her bones were protruding (you could see her spine, her pelvis, collarbones and ribs etc) and yet she had this huge belly that always looked painfully stretched. Her eyes were sunken and had dark circles under them, she had lost almost 2 kilos in 4 weeks. I had, had enough of doctors telling me that she was fine and she would get better. I knew something was wrong.
So on the 6th of April I took her to the TCH Emergency and told them I was not leaving until they did some tests to find out what was wrong with my baby. (Up until that day no one had done any tests until I demanded them) She had blood tests, stool samples, ultrasounds and a feeding tube put in so that she could do the Barium dye test, where we had to sit for 3 hours while they injected her with the dye and then took an X-ray. Then she had to lay there for 45 minutes and take another one and so on (horrible experience!)
Finally, after 5 days in the hospital, the blood tests came back showing she had tested positive for Celiac. She was booked in for an Endoscopy the next morning. The Biopsy results showed she had "severe and total villous atrophy". We went home and I googled like crazy. We joined the Coeliac Society, who sent a welcome pack. We purchased a bread maker and re-stocked our pantry with gluten free goods and as you can see from the before and after posts, so far she is thriving on the GF diet.
One of the Best Ways to Help a Child with Celiac
is to Help Others Understand Gluten Free
Ultimately, I was able to make a change in how one facility handles special diets. But that is one small drop in a very large bucket.
Revise Edition - January 2016
My Son--and his Inspirational Journey.
Will include updates written by both my son and his friend/passenger who also sustained a severe traumatic brain injury. Both recoveries are inspirational and amazing!