A Picture Speaks a Thousand Words
Celiac disease affects at least 1 in every 133 of us, according to studies released in 2003. Some now actually say its closer to 1:100.  And even more are affected by gluten intolerance!  The sad fact remains that most 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 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.

Our stories below give you a window into just a fraction of the 100's of symptoms undiagnosed celiac can have.  I am not a health care professional or a celiac 'expert'- nor do I play one on t.v.   Click on 'Celiac Links' at the top of this page or at the end of this post for just a few of the many sites that will give you more in-depth information about celiac disease.
(More stories shared next month - June 16th.  To be included please send your story and pictures to me at dsimpson@dsimpsonbooks.com)

A Lifetime of Symptoms - A Celiac Diagnosis
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.

   Negative Celiac Test -
          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.

  Discovered Gluten Intolerance on Her Own
     (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)

Diagnosis After a Lifetime of Illness Leads to Health  that Inspires a New Direction in Life. 
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.

Many (MANY) parents have discovered benefits with a gluten free (or gluten and casein free) diet for their kids with autism -
                              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.

SICK, SICK, SICK His Entire First 3 1/2 Years -
                                                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.

Mom's Research of Symptoms Led Her to Request Celiac Testing
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.

    Mom's Dilegence, Research
                         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.
If the link above does not work for you, copy and paste
this address: https://www.facebook.com/trevorceliac?fref=ts

Celiac Tests Were Run but the Report of a Positive Diagnosis was MISSED - - Until AFTER Mom Decided to Change Diet!
          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.

   Just Diagnosed - Through (you guessed it)
                                       Mom's Perseverance!
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.          

I'd been greatly looking forward to this day.  Graduation. My youngest is through college.  It was delayed by something unexpected last year.  But finally, with classes finished, he could proudly wear his cap and gown, leading the way for approximately 450 others while carrying the banner for the class of Arts and Sciences.  A great day indeed.  This mom was full of pride (and tears) - (a lot of tears :)Of course preparation was made ahead as to how to celebrate this special day.  And aren't most (if not all) special occasions celebrated with food?!   So I asked Michael days earlier where he'd like to go for dinner.  I threw in the option of Qdoba's catering (as Qdobas is one of his favs).  And that was it!  I did ask again later, "are you sure you don't want to go to a nice restaurant?"  And the answer was no - and the reason was simply this: at home we can have the comfort of all being around the table together, enjoying conversation more freely.   Together was the key word. 

And that's what we did, and that's what we enjoyed - a fabulously fun meal together.  And even though my table seats only 8, and even though we had room to move in another table, we pulled chairs up to the corners and made room for the 11 of us.  And what fun it was! 

Life is full of changes, sometimes unexpected, sometimes planned.  Grab each day with joy and appreciation for those around you.  Enjoy life.  Celebrate it.  And always remember to say those 3 words to those who mean so much to you, "I love you." 

and discovered the health I had been missing - and ever since discovering how common yet under diagnosed celiac disease is, I have had a dream of everyone getting tested and all who have celiac or gluten intolerance to discover the (emotional and/or physical) health improvements that go with a gluten free diet.

My  passion to make a difference has resulted in these 2 ways for you to use to promote celiac and gluten free awareness:
1. Celiac Awareness Facebook Cover and Profile Pictures

2. A children's book to help others understand gluten free. (shhhh...don't tell the reader it is intended to secretly educate them - and to create some empathy) 
Available in both paperback and kindle versions.  Yes, I have a dream of all teachers reading this book in order to improve their gluten free students chances of being included in classroom celebrations and food related activities.

Please display a banner or profile picture on your facebook page and share a book with someone who would benefit from understanding a gluten free diet.
Thanks! :)

Here is one Book Review and Giveaway opportunity for Adam's Gluten Free Surprise.
This Giveaway ends May 8th.

And I was a guest blogger here.  This Giveaway ends May 5th.

May is Celiac Awareness.  The seeds that continue to be planted and grow are making a difference.  The time from onset of illness to being diagnosed is being reduced.  Here's a simple way for you to plant some seeds:  Awareness Banners

May is 10 days away - Celiac Awareness Month.  I hope you include one of these profile or facebook pictures to increase awareness.  Its an easy way for you to do your part in increasing awareness.  Click here to invite your family and friends to join.

As a teacher and as a mom who just wants what's best for all children, I have this constant thorn in my side to keep trying to make a difference.  The best way I could come up with was through the kids' book I wrote, Adam's Gluten Free Surprise, Helping Others Understand Gluten Free.  I envision any teacher or grandparent who reads it to have increased empathy and understanding for their student or grandchild who requires a 100% strict diet.  But getting this book into the hands of family and teachers is not easy.  There is a current giveaway going on right now, for example - but 10 times the number who entered the book giveaway entered the food giveaway. 

Click here for a chance to win a copy of Adam's Gluten Free Surprise:  GlutenAway.   The first Giveaway is for a wonderful assortment of gluten free products.  Keep scrolling for the 2nd giveaway opportunity.    Expires April 22, 7PM EST   No kids?  Donate to your local school and help a teacher understand :)

When I cook, I'm an 'about this' and 'a little of that' and 'maybe some more of the other stuff' kind of cook.  No exact measurements here, but it should give you an idea. :)

O.K. - I know its early - but here's the idea - To get as many as we can to change their Facebook profile and /or cover pics for at least one week in May.  How cool would it be for others to see these popping up all over their facebook walls :)

There are a few samples below.  Click on the 'Celiac Awareness' tab for more cover and profile pic options   This is just a start as the selection will grow through April.

Special color or wording request?  Email me at dsimpson@dsimpsonbooks.com

I just saw this headline about Gwyneth Paltrow's daughter cheating on her Gluten Free diet once a week.   Hmmm...First, I think it's fabulous when parents do their best to make their child's diet as healthy as they can.  If everyone were so cautious with their family's diet, making sure they ate nutritiously  and restricted the junk food, what a fabulous world this would be, for sure. 

But . . .

When someone is gluten free because they believe it to be healthier - not because of celiac or gluten intolerance - eating something with gluten is not 'cheating' on a gluten free diet, in my humble opinion - rather cheating on a self imposed (or mom imposed) strict diet.  Again, I'm not knocking anyone for implementing a diet they believe to be a healthier way of eating - but this title to this article sends out a message that is potentially harmful to our kids (and adults) who cannot cheat once a week - or ever.  It can be harmful to our kids who see this and think "maybe its o.k. to cheat now and then" - but more importantly it diminishes the importance of how strict we need to be in the eyes of family, teachers, restaurant employees, etc who might already question whether or not we really need to be down-to-the-crumb strict.

Also - hmmmm - last I knew, Cheetos and Coke were gluten free.  

*Please note - This is not a slam against Gwyneth Paltrow or anyone who decides to be gluten free (or put their kids on a gluten free diet) without diagnosis.  I personally believe a whole bunch more than who are diagnosed with celiac would benefit from a gluten free diet.  Its the article title and statement of 'cheating on a gluten free diet' that bothers me . . .  I view this kind of cheating as cheating on the overall imposed healthy diet, if this makes sense - not on 'gluten free'.  Like I said above - I always love to hear when parents take good thought in what their children eat.  NOT slamming anyone for choices other than word choice.

Just imagine the possibilities.  What if all children were routinely tested for celiac and if all physicians understood celiac (and gluten intolerance when testing is negative)?  Just imagine.

I asked moms to describe their child’s health improvements once gluten free.  Below is what I heard in one short hour of just one day on one small FaceBook page.  Fortunately many many more kiddos are benefiting from a correct diagnosis.  But tragically, so many more kiddos are still suffering from symptoms – some life threatening, most life impacting.   Most often this lack of testing is due to a lack of parent’s awareness, because, as you can see below, many of these kiddos are gluten free because of mom’s perseverance once learning of the possibility of gluten being the root of issues.

But also, unfortunately I’ve heard of doctors and parents who avoid this solution because “it’s too hard”. Too hard?!!   Would we tolerate it if a child was forced to live with an untreated broken arm because it’s too hard to have to take that extra time that goes with assisting this child with dressing and bathing and eating because this child now has a cast?   Of course not!

Too many kiddos are being disciplined for behaviors they cannot control and suffering the consequence of the effect it has on academics and social skills.  Too many are still suffering the effects of being malnourished.   Too many are sick needlessly, period. 
(I am one who learned all this first hand.  A life time of being impacted physically and emotionally.)

Do any of these kiddos sound like someone you know?

1.       This little girl is now gluten and dairy free after mom searched for answers for her out of control asthma and back to back viral infections.   She suffered from fevers that could last as long as a  week - as high as 104 degrees! - for an entire week!  Now, gluten free, no more asthma and no more back-to-back viral infections.  She rarely gets sick – and when she does it doesn’t last long.   They did attempt to reintroduce dairy once and this resulted in bronchitis, so no more dairy.  A functional medicine doctor diagnosed mom with celiac and her daughter with non-celiac gluten intolerance.  No 104 degree fevers since being gluten free.  The bloated belly she once experienced is now flat.

2.       Along with the standard GI issues, this young man’s behavior is greatly affected when he gets gluten.  Mom says that he gets sassy and has temper tantrums, behaviors that disappear when he’s gluten free.    He also experiences neuro type symptoms; slurred speech and clumsy, such as that of someone who has been drinking .

3.       Here’s another little guy who suffered with  bronchitis and pneumonia.   It was so bad during one episode that he was life flighted to a children’s hospital due to pleural effusion.  Testing finally discovered that he was IgA absent, making testing inaccurate and putting off a celiac diagnosis for two years.   It was mom’s demand to see a specialist that finally brought their answer.  But it was almost too late.   He had gotten so ill that his first two endoscopes were cancelled, delaying a diagnosis even further.   He was an extremely ill and malnourished little boy.  He was also a nonstop nail biter.  When mom asked his pediatrician if this could be due to pica, he just laughed at her.  As soon as his vitamin and iron levels were back up however, guess what? – the nail biting stopped. 

4.       Dr. Jekyll and Mr. Hyde.   We so often hear of personality changes.  This mom describes her daughter as naturally very, very sweet when gluten free.  But when she gets gluten her behavior is filled with anger.  Even at just eight years of age, she recognizes this change in herself, saying that she just wants to punch something.  

5.       After experiencing severe asthma attacks prior to discovering an issue with gluten, another mom shared that her son is nearly asthma free now that he is gluten free.  He also experiences anger problems with gluten, as well as dandruff and weight gain.  And his brother, now also gluten free, was sick all the time prior to going gluten free.  He now no longer gets the annual strep throat and tonsillitis that he was so used to experiencing.

6.       The doctor prescribed miralax daily for another child’s issue with chronic constipation, which didn’t help.  She also experienced weight gain and bloating.   After only a short time gluten free, her clothes decreased an entire pant size due to the elimination of bloating,  and she no longer complains of belly aches.   She was tested for celiac prior to going gluten free, but tests came back negative.  Fortunately, mom understood celiac, having been diagnosed herself several years earlier after also having a childhood filled with belly aches.  She made the choice to transition her daughter to a gluten free diet.  And after only a few weeks gluten free she asked mom if she could be gluten free forever – she felt that much better!!

7.       Seizures!!  This child had experienced an uncontrollable seizure disorder – for 9 years!  He experience 9 years of seizures,  9 EEGs, 10 Epileptic meds with 2 near fatal reactions and brain surgery as the next step towards relief before a gluten free diet finally put an end to this family’s nightmare.  And he’s been seizure free now for 8 years!

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