Sick Since Birth/Celiac

kenziebowling.jpgBehavior is just one of the issues that prompted us to seek out a Naturopathic physician. Kenzie has had issues since infancy. At 9 months old, she underwent testing for some pretty scary diseases because she had failure to thrive. Going from 9lbs 7ozs at birth to only 16lbs 2ozs at 12 months. For several months early in her life, she had what I considered a severe case of baby acne over her entire face. It was horrible. Now I realize it may have actually been eczema caused from her food sensitivities. She would spend 20-30 minutes screaming, grunting and turning red trying to have a bowel movement. She also spit up much more than her older sister had, but not to the extent that anyone considered it “abnormal”. I was breast feeding and she didn’t have any foods introduced until 6 months. Then I went through the standard protocol of one food for a week, then adding another. I didn’t notice a reaction to any specific food, but the constipation and growth issues didn’t pop up until between 7 and 9 months of age. It was probably the addition of wheat and gluten containing foods that prompted this, but it was a slow reaction. Not one that I picked up on as a result of introducing a new food. The doctors didn’t even test for food allergies. Eventually, when all the “scary” disease tests came back normal… they decided to treat the symptoms and label her a “difficult child” regarding the behavior. At 9 months, I was instructed to start offering her a bottle of formula after each breast feeding to ensure she was getting enough nutrition. She wouldn’t drink formula. So, the Doctor prescribed Pediasure instead. Everyday she would get a can of Pediasure with fiber, usually in two servings offered in a sippy cup after she finished nursing. In addition, she was given Miralax once a day in a small amount of diluted juice. This combination helped with the constipation, but she remained a relatively small child.

As time went on, Kenzie became a screamer. Throwing horrible fits and stomping her feet for no apparent reason. She would get up in the morning and stand beside my bed, screaming and thrashing around. Nothing would calm her down until she was done. Most of the time, she didn’t even know what she wanted. In between the fits, she was a happy child who was exremely active. She started walking at only 10 months and followed her then almost 3 year old sister all over the house.

Kenzie is so fidgety, that I have always called her my “dirty child”. Everything she touches ends up all over her! Every bit of food, art mediums, dirt, etc… I thought I was the Queen of Stain Removal before Kenzie. Something about the combination of her saliva and chocolate caused spots to set for life!

While my 7 year olds can play calmly, Kenzie is hyper-reactive. She can be in the middle of quiet play and suddenly she is having a crisis. She also has a tendency to be a bit rough with her younger sister, likely to hit or push at an alarming frequency.

As far as illnesses go… she is sick all the time. From September until Spring, she has a constant cold. Runny noses… coughing… wheezing. She coughs so hard she will vomit. We rely heavily on an inhaler so she can return to normal breathing. Everytime she gets a cold, it settles in her ears. She will wake up crying. I try to treat as few of these as possible. When her ear starts hurting, I put a couple drops of Floxin in and usually that nips it without having to search out antibiotics.

Potty-learning wasn’t achieved until nearly 4 years of age. And we still have night-time isues. If Kenzie has to go to the bathroom… it is a RIGHT THIS MINUTE emergency. This is getting better and I have faith that in the next year she will have full bladder control. In the meantime, we keep a change of clothes in her backpack… just in case and I get her up to potty before I go to bed at night.

Right after she turned 4, we were prompted by a family friend who has been a nurse for over 20 years. She said that Kenzie had the presentation of a child with food allergies and that Doctors often miss it because they don’t see the child everyday. We were spending the week at the lake house with several families and she saw Kenzie all day, every day during that time. We removed all preservatives, dyes and artificial flavors. Going to foods labeled “All Natural” or “Organic”. This made a huge improvement in the behavior, but didn’t affect the blotchy face, itchy skin and other physical symptoms she had. The MD Allergist we saw did a standard skin prick allergy test. Nothing showed reactive. He basically said that it was our imagination that foods were causing behavior issues, and that our expectations of how she reacts to certain foods will cause her to act that way. Funny, since we had NO clue what foods might be prompting her reactions. He then went on to say that reflux was his favorite diagnosis for kids that had belly aches and coughed at night. So we went home with samples of children’s Prevacid SoluTabs (both dyed pink and flavored w/ artifical strawberry) and a prescription for more to add to our inhaler and Zyrtec she was already taking. He said that the test was just too hard for young kids and the best thing to do was treat for it and see how things went. I have a differnt opinion and chose to not treat my child for some illness she probably doesn’t have. We chugged on with our diet modifications until it was apparent that we needed someone who would look further for an answer. That’s when we went to visit the Naturopath. I had long conversations with her about what was going on and my concerns with the behavior/food relationship. I also shared my concerns with ADHD and that I didn’t want my child labeled by a MD and then medicated to “fix” the problem. Now we have some answers. And are hopeful that removing the Wheat, Gluten, Gliadin, Milk and Whey from her diet will help us even more.

When Kindergarten started this year, Daddy was making bets on how long it would be before we were called to the Principals office. I was sure that with the right direction she would be fine. Turns out, she is doing fine. Good even. The Teachers are aware of our needs and how to direct her toward success. I pack ALL of her snacks and lunches, not allowing any substance from joint snack items or school lunches to pass her lips. The staff is great at staying in touch with me, saying that Kenzie was more red and blotchy today or having more fidgeting than normal. This helps us stay on top of what foods might be prompting her reactions, both physical and behavior.

With the diet modifications we have made, Kenzie should hopefully return to normal body function and feel like a “normal” child at school. I worry about her teen years… will she get rebellious and decide she wants to eat the foods she shouldn’t have? What if she does and then there isn’t an immediate response? Will she understand that eating something once may not affect her, but bringing these offenders back into her diet may cause life-long health and behavior issues?

Our child is not a “problem”. She is an amazing… smart… funny and loving child. She can put together a puzzle in a quarter of the time it would take me. She is going to be a whiz with math and science, and might need a little help to slow down and take her time when writing. She is starting to focus on her letters more… instead of sending her eyes wandering all over the room and saying “I don’t know”.

We are embarking on the changes needed to help her be able to succeed and I am positive it will help!

Six Month Update…

We have officially been GFCF for Six months now.  The changes have been astounding.  The tummy aches have all but disappeared… another strange phenomenon is that all night time accidents ceased within weeks of the diet changes.  Coincidence?  There have been major improvements in regard to focus ability… she is less figidity and is able to pay attention better.  The teachers report she is well within the “normal” range for behavior.  Learning to read is well underway and she is right on par with other children her age.  I am confident that we found the answer we were looking for.  The combination of her diet and supplementation of DHA and vitamins has been astounding.  In it obvious if we miss a day of the DHA… so we are careful to not miss days.

*Almost 3 years Gluten Free… and life is relatively normal.  I can definitely see any accidental contamination or food sneaks.   We’ve also cut out almost all refined sugars and switched to raw, local honey or palm sugar or rapadura when sweetener is needed.  This has made a big difference for all of us.

Five Years Gluten Free!

Kenzie was never scoped for Celiac… her blood work (the second round) was positive and she responded so well to a GF diet that I didn’t feel it was worth it!  That said, later we found out that I am in fact a gene carrier and have Celiac, and that Kenzie’s older sister ALSO has Celiac.  The baby girl looks Celiac, but biopsied negative at 3 years old.  She is a genetic carrier and is gluten free as well.  The baby was diagnosed with relux at her endoscopy and prescribed medication (just like Kenzie had been).  We’ve come to learn that dairy is the cause of her relux symptoms… so she is GFCF.

I’ve not kept Kenzie on a dairy free diet… and I’m wondering if that’s part of the problem I’m seeing again in her behavior (more defiant behaviors have returned) and increased frequency of colds again… Guess it’s time to go cold turkey again… she’s going to hate me for it.

36 Responses to Sick Since Birth/Celiac

  1. jenefur says:

    Wow, what a journey you’ve had with your daughter. I pray that the new diet is working for her (and for you!)

  2. wendy says:

    I’m so glad you’re finding the help that you need through diet changes. What a difference it makes! Hopefully as your daughter continues to detox from everything that has been introduced to her body, you’ll continue to see improvements. I’m wondering if you’ve considered corn as a problem food, though. From some of the symptoms that you still have (pee immediacy, splotchiness, behavior, etc.), it could definitely be a possibility, unless you’ve already ruled it out. I see the same symptoms in both myself and my toddler with corn.

  3. theo says:

    Hey, I just came across your blog, and read this… it really struck a chord for me, the description sounds very similar to my littlest one who is 17 months at this point… even the same exact weight at 12 months! screaming all the time as her form of communication, supposed reflux and put on zantac but not tested, asthma/reactive airway requiring an inhaler.. fussy and screaming at night all the time etc.
    we went and saw a naturopath and now are both (she’s still nursing) on a rotation/elimination diet. i will follow your blog, you have great ideas, i will watch your little ones progress with hope.

  4. Sommer says:

    You said you used to use Shaklee years ago. Have you considered it again? Have you seen the landmark study?

    Landmarkstudy.com

    http://www.shaklee.net/sommer

    I don’t usually do this in the comment section but it might help you. MIGHT?

  5. Lorena says:

    Hi Jamie,

    What a story! As a mom and a human being, I know how hard it is to watch a (your) kid suffering. I’m glad to hear that you got to the root of the problem — things should take a good turn from now on. Unfortunately, food disorders and allergies are so common nowadays … but this does not make them any easier to live with.

    All the best to you and your family!
    Lorena.

  6. MrsMama says:

    Your story sounds familiar. Only we didn’t figure out the underlying cause until our daughter was 13. Like you said, with diet changes and supplements, our daughter has improved drastically. She is feeling so much better, that she *wants* to eat “right” and to stay on her restrictive diet. We’ve just had to be creative so she feels like she’s not missing out too much.

  7. Jessica says:

    As a recovering celiac, I can tell you that your daughters aches and pains are very real. Poor baby. I feel so sorry for kids who suffer undiagnosed. You are doing wonderfully good things for her now. Don’t stress about those teen angst years. They may take care of them selves.

    I can also tell a huge!!! differecn if I have had my B12. Anyone with foiod allergies of any severity if low in B12. You do not absorb it well form your food soa pill form supplement is not helpful either. Ask your Naturopathic about injections. There is no overdose risk, they are cheap and VERYYY helpful. I got a new lease on life when I started taking them. My Dr gave me 3x the “monthly maintnance” 3x a week.Read: massive anmounts. But I needed it. I could tell a difference within hours if I missed one. That went on for over a year till it started to slack off. (If you forget to take one, you dont need it as badly. That is what my Dr told me when I started and I found it to be incredible true. ) Feel free to email me if you have any questions.

  8. Devion says:

    WOW! What a story! I have a 2-y-o and a 7-week-old and cannot imagine going through such an ordeal knowing that my baby was hurting in such a bad way! I am thankful that you kept looking for answers and didn’t accept a dr’s inadequate explanation just because they have a degree. Like you said, they don’t see the child 24/7, so they can’t get an adequate picture of the whole issue from just the parents’ consultation. WOW! I am just amazed at the difficult journey that you went through and am so glad that you got things straightened out.

    You said that the nighttime accidents were over, but before I got to that point where you said that, I was going to suggest chiropractic. Many people do not know that chiropractic can cure bed wetting. I thought I’d go ahead and post it in case it could help someone else out.

    I pray that your daughter’s life will be full and lacking nothing as far as food and treats are concerned! 🙂

  9. Mary says:

    This sounds like my oldest child she’s 2 now, We took her off of all dairy in feb she was about 22 months. She was getting horribly constipated, had what the doctor kept calling seasonal allergies, as well as not interacting as well as she should have been, (bad eye-contact, “spacing out” and taking a while to snap out of it)

    Her constipation seems to be coming back, as well as attitude problems that seem to be more than just “terrible twos” We had her tested for a Gluten allergy but I have a feeling it won’t show anything.

    Glad to see another Mother that didn’t mindlessly take her doctors word. As the Mommy YOU are the expert in your child.

  10. Wow, in my busy life I didn’t read this page! I will let you know that my Son did not turn autistic, but when he got sick he turned into a child I didn’t know!

    We found out quick for him. For me I was a Celiac for at least 12 years before learning about what I had. I was diagnosed at ADD. I’m not now! 3 years and doing GREAT.

    I’m glad you path is going well. There are a lot of Autistic/Spectrum Kids in Kyle’s GF group that are doing wonderfully. One is now 12, fully mainstreamed and the captain of the baseball team!

    Happy thoughts towards you!

  11. @Eileen… Kenzie (K3) age 6 has Celiac, tons of allergies, MCS (Multiple Chemical Sensitivity) and ADHD (which is diet controlled). Kelsey (Little Critter) age 3 has Sensory Perception Disorder and is looking to be somewhere on the Autism spectrum. Two very different kids with the same dietary needs! It’s funny (odd) how encompassing the GFCF is!!!! It’s worked wonderfully for us.

  12. Allie says:

    hello, i have just stumbled upon your blog while looking for a recipe for corn free marshmallows. my sons both have a lot of food intolerances but there is hope…food allergies and intolerances are caused by leaky gut. once the gut is healed, those foods can be eaten again since foreign proteins are no longer getting directly into the bloodstream. hth.

  13. Karen Joy says:

    Jamie ~ I can’t believe I never read this page. Thinking back… my 7yo, who has been g.f. since he was 13 months (due to celiac disease) went c.f., too, in Feb ’07. Within two months, he stopped wetting the bed, which he used to do, nightly. I never put the two together. He still has an accident once every 2-3 weeks, but he doesn’t have to wear Pull-Ups anymore, and his bed-wetting is mostly a non-issue. He’ll go through spurts, though, where he wets the bed 2-3 nights in a row. When/if that happens again, I’ll look closely into his diet, to see if I can find a culprit. Thanks for the info!!!

  14. Felicia Claudio says:

    I want to thank you so much for posting this information. My 6 year old daughter has only been gluten free for a few weeks, but what a world of difference. She has been misdiagnosed her whole life. Same diagnosis as your child, refulx, etc. I think your site and all the symtoms people post for their children will help other families get diagnosed. Sadly our children had to be in tremendous pain for so long before we could fix it. Below were my child’s symtoms:
    Severe stomach aches daily
    Severe ear infections (13 in one year)
    Lactose Intolerance
    Occasional bed wetting

    Good luck to all the parents!

  15. Carrie says:

    Hi Jamie,

    Reading your story has reassured me that I do know what is best for my child. He also has been listed as having “Probelm Behaviors”, all the tests have come up non reactive, we to are always sick, asthma, colds, ears. he screams for no reason and doesnt even seem to realize it. Our school district has been very supportive helping getting ready for Kinder without labeling him. We just started the GFCF diet.

    Thanks for shairng your story 🙂
    Carrie

  16. Michelle says:

    WOW! This sounds so similar to my daughter. I’ve been so reluctant to remove the wheat/dairy because I know it’s going to be difficult for me. Your story really inspires me though. Thanks!

  17. Andrea says:

    Hi, I just found your blog and was very interested in what I read. I have a child with Autism who has been on the GFCF diet now for two years. He was diagnosed at 2.75 years and started the diet at almost 3.5 years of age. I had already known of the diet beforehand but convinced myself that it was wrong for my child. He was already a picky eater and I thought that if he only ate 4 things (for example) why would I take 2 of them away. He was non-verbal, not toilet trained, a generally happy kid who randomly screamed for no reason and it seemed like it was happening more frequently just before I started the diet. Within a three days of being on the GFCF diet he stopped screaming, had slightly better focus and eye contact and started to phonetically say the alphabet. It was amazing. The toilet training came one year later – the summer before he started Senior Kindergarten. We have found out that he is largely affected by added dyes and artificial flavourings. He has a yeast overgrowth in his bowels that we are trying to control too. It’s amazing what something as little as diet can do to positively affect your child. We notice that his focus is affected when he sneaks food that has gluten in it. Be patient, it can sometimes take upward of 9 months to get gluten out of your body but only 3 days to get dairy out.

    Good for you for posting this and letting others out there know that you have done what some are not quite willing to tackle or like I said, convinced themselves that it is not the right thing for them. I sometimes kick myself for not having tried it earlier with my son but we’re doing it now and it’s helped him tremendously.

    For your child that might be on the ASD spectrum I’d like to add that while seeing a Naturopath might be working for you now you might also look into a DAN! doctor. DAN! is for Defeat Autism Now. A DAN! doctor is one who typically is a GP but chooses to treat children with ASD through vitamins, supplements and detoxification. So far my son has been tested for things that a ‘regular’ GP would not test for and it’s amazing what has been found. He’s been tested for heavy metal poisonings (often mimics Autism), yeast overgrowth, food intolerances through blood work not the prick test, vitamin deficiencies, etc. I live in Canada and unfortunately there are rarely any labs that tackle tests like these so we’ve had to do a lot of them through U.S. labs at a costly rate but it’s been worth it.

    I’d like to add one more thing. Regular GP’s are big promoters of antibiotics as a cure-all for everything. What they fail to tell you is that these antibiotics not only kill off bad bacteria in your body but good bacteria too leaving your body open to more infections. With a lot of doctors guessing at what they think is wrong and using their prescription pads as ‘magic wands’ they tend to leave out vital information like to take a good probiotic with the antibiotic. If your child has been on antibiotics for your doctor’s lack of trying to solve the problem, it’s not too late to put them onto a good probiotic to build up that healthy bacteria in their guts again. Also, a good fish oil is great for healthy brain function.

    That’s all. I’m rambling now. Thanks for the blog. Best of luck to you and your family and that teenage girl that you know.

  18. Amy Jussel says:

    Hi Jamie, I too had no idea about your GFCF trials and tribulations, wow, what a firsthand story of hope, inspiration and a great big exhale. Our nutrition guru for Shaping Youth just did a piece on gluten free surges in product positioning, and I plopped your link there, as I feel it’s REALLY important people know there ARE options out there and ways to get help…here’s her blog, btw:

    http://rebeccascritchfield.wordpress.com/2009/03/13/is-gluten-free-the-new-fat-free/#comment-5947

    Thanks for the ‘linky love’ on the ludicrous ‘tween Dora’ concept/post…I’m hoping Mattel/Nickelodeon will take all this input quite seriously, considering moms have sounded off to the tune of over 13,000+ of us on the petition already, woohoo! Here’s to REAL discovery…whether it’s about gluten-free foods or adventures and exploration!

  19. Adrianne Wallace says:

    Living in MT has made finding good health care for my son (diagnosed ADHD) difficult. We are now remotely ‘seeing’ a ND in Oregon who suspects celiac. (Waiting for test results.) I have my doubts but trying an elimination diet hasn’t worked.

    We have adhered to a GF/CF diet for the past 2+ months but, because my son is 9 and I’m not trying to keep him from playing over at friends’ houses and breathing down his neck at school, I know he’s had both gluten and casein repeatedly even though he hasn’t gotten any at home.

    The doc says that it takes a long time to see if gluten is a big player in my son’s behavioral issues. Here’s my conundrum. When he was little, up until age 4, I controlled virtually everything he ate. (Grandparents sometimes had their wicked way, but I was strict with them, too.)

    At age 7 (almost 8), he goes to birthday parties, friends’ houses, children’s religious education at our church… I send GF/CF treats to school & church when I know I need to and am on top of it but the other day, some child’s dad brought in cookies just for fun!

    HOW IN THE WORLD (please, anyone, can you tell me?) DO YOU FOLLOW THE GF/CF DIET WHEN YOU CAN’T FOLLOW YOUR CHILD EVERYWHERE HE GOES?

    I am so frustrated and despairing that, if this is our key, we will ever be able to unlock the door. Our son is a typical kid: fairly obstinate, in love with mac-n-cheese, & unable to see the big picture when he doesn’t really understand the issue with his behavior and, when staring down a brownie, simply doesn’t care. I don’t blame him and I don’t know how to fix it.

    WHAT HAPPENS NEXT?

  20. Whitney says:

    Howdy!

    I wanted to share a bit of myself with you, this might help and give hope as your girl grows older with Celiac Disease.

    As I was growing up in my mother’s health food store in Texas I slowly developed physically even though I put away food like a high school football player, was diagnosed with hyper focus/ mild autism, extreme seasonal allergies, and a joint condition no one could figure out. My mother got advice from countless experts that shopped with her, none of which even thought of celiac. Finally after MDs threatening to give me a double knee replacement at 17 years old she started sending me to any alternative doctor that would see me before I went off to college.

    An acupuncturist was able to get my lymph system moving again, and thus got my joints working again pain free. From what he explained to me, my body was trying to clear my body through my lymph system but had gotten so clogged over the years that it was causing the lymph nodes and channels in my joints to swell as they were the only places where movement occurs. I was able to go off to school with significantly less pain.

    I progressed through a year of college with my seasonal allergies becoming worse and catching anything that circulated through the student body, including a bout of mono that lasted more than a month and resulted in 5 simultaneous secondary infections that laid me out for another month.

    After I felt like I slept through a semester of college my mom called me home and found another person for me to see. To my surprise I was taken to a chiropractor and naturopath, where the first thing he did was take an extended blood drop test. On the monitor, the instant he put the slide under the microscope stated “Wow, you just ate something you are veeeery allergic too.” Thinking back on my favorite meal of chopped bbque sandwich and a large sweet tea, and being a teenager I was very concerned my favorite foods were about to be taken away from me.

    The dr started by testing my reaction to HCl, which we normally produce in our stomachs to digest foods. I am working on a biochemistry degree and one of the first things we learned about HCl production in the stomach is that it is shut down when the stomach lining reacts with something the body is allergic too, thus preventing the body from digesting it. Most people will quickly realize how much everyday food actually has wheat in it if they ever get the diagnose or attempt to try for a gluten free life.

    He finally explained to me the only way to actually test for food allergies is by a blood test and the only way to “officially” test for celiac was by a biopsy. My mom was in no way going to submit me for a biopsy but did allow the blood test. He told me there are only three labs in the United States (at least as of 6 years ago) that can test for a full spectrum of food allergies. Most dr’s don’t even consider this.

    My Dr sent my blood off to one of the labs and about 3 weeks later after I had returned to school we got the report back. He amazingly wasn’t as astounded as I was that my list was 3 pages long, 10 point font. He circled my major allergens and told me that I should get off them for 6 months and then we would test again. I flat out told him that there was no way, there was wheat and garlic and pineapple and chili powder on this list and it just wasn’t going to happen. He told me to read up on Celiac Disease and that I might change my mind. Turns out I was already well down the road of Celiac Disease and had many many symptoms and he did not need a biopsy to diagnose me.

    I spent about 3 years in denial, I would not eat bread but would eat fried foods, cold pizza, and other things which I considered “not as bad” because they “didn’t hurt as much”.

    I slowly started to notice the difference, that my symptoms of agitation and hyper-focus became worse when I had anything containing wheat. I got the upset stomach and IBS when I had other things on my list like garlic and chili powder.

    Really it is a show and tell with your children, when they are old enough and starting to rebel have them read a book like “The Gluten Free Bible” that explains why the whole family chooses to be gluten free and why their future spouse and friends will help out to keep them healthy. If they have trouble understanding why they lose energy during the day or a relative recovers in 3 days where it takes a week or more for them to get over the same issue, have them read “The Spoon Theory” which you can find on the web through a search engine.

    There is hope and there will be some pitfalls but the biggest thing is to let them know you love them regardless. My mom has become a Gluten Free Mecca in Texas due to her stocking of GF products and having a daughter willing to guinea pig this stuff and any recipes we are adventurous enough to try. She loves to surprise me with new and interesting things, like finding a completely GF restaurant that we can share when I go to visit. I was lucky to find a man who truly loves to try anything I put in front of him and has even agreed to have a completely GF wedding catered by my favorite GF restaurant and bakery. My future parents-in-law have reached out to me and discovered Outback Steakhouse has a GF menu, and we met one of the head chef/mangers that teach the standard chefs how to prepare GF, I just love that I can go to a national chain and get a desert that isn’t bad for me.

    I want you to know there is hope for your daughter, that yes she may act out when it comes to that time, but she will work through it with you by her side.

    Good Luck with all of your cooking endeavors and just let everyone you know what you’ve discovered… IBS is a symptom, acid reflux is a symptom, and we do not have to suffer. If you don’t like the diagnosis you are given, try again… there are answers.

  21. tami says:

    Wow, it’s like reading my youngest daughter’s history all over again. We got very lucky because we had a very astute pediatrician who kept insisting that my daughter had food allergies even when the first allergist said she was not. She did eventually test positive to eggs, peanuts, corn and peas. She’s also lactose intolerant.

    Five years later she does not test positive to any of those any more but she’s still definitely sensitive to corn, especially very processed corn like high fructose corn syrup. Giving her HFCS is like giving her 5 Red Bulls with a Jolt cola chaser.

    I found the following website VERY helpful and I bet I’ve given it out at least 200 times over the past years. http://www.cornallergens.com/symptoms/corn-allergy-symptoms.php My daughter had almost none of the traditional symptoms but more than half of the non-traditional ones.

  22. Emma says:

    Thank you for posting this. I went through the same thing with my son when he was 2 and he eats no dairy, gluten, artificial anything or dye. Doctors told me the same things they told you – “reflux” and gave us medication which I never gave to him. He is still largely affected by outdoor allergies but just bought him an air purifier for his room that works wonders. Keep up the good work. I’m amazed that people won’t at least try this for their children (why wouldn’t you do anything you could to help your child even if it’s not easy) and how many doctors think it’s nonsense. Continued success!

  23. Trina says:

    What an amazing story and I applaud you for sticking with what you believe in and felt was right for your child instead of listening to others. I have 2 boys ages 2 and 4 and have fed them (mostly) an all organic/natural diet since they started eating. It’s amazing the change in their behavior with just a tiny bit of too much sugar, artificial flavors and colors. It’s hard at times and I do get funny from moms in my play group because I feed my children “too healthy”. So glad Kenzie is doing well and LOVING life!!!

  24. Becca says:

    Okay…so I NEVER post on these websites, but I found you by searching for a corn free marshmallow alternative and was curious to find why you were so strictly following a corn free diet. Most sites I find are following a allergy free diet due to physical reaction to the foods, but finally someone else has found that the behaviors that our kids display can and are affected by their diets. Our story is similar in that my youngest son was labeled ‘difficult’ right from the very start. He was put on reflux medicine at his 2 week doctor appointment and always had some sort of rash on his face (labeled baby acne and told not to wash it with soap). He was so gassy at a week old that he smelled worse than the dog! He was exclusively breastfed until he was 6 months old and then very carefully introduced to food. By the time he was a month old he wouldn’t allow ANYONE to hold him but me (not even my husband) and when someone would try to talk to him he would cry like he was scared. People told me I was spoiling him, that he was too much of a ‘Momma’s Boy’. This went on until he was a year old. He still would interact with only a select few people, and could throw a tantrum like no other child I had ever met…by that time I had started to ask about autism and others kept insisting that he was just a spoiled brat. Finally on a summer trip to visit my mother in law it was suggested that he had a milk allergy. My mother in law took all dairy out of his diet and the red patches disappeared with in days, but he was still very clingy to me and the littlest thing would set him off. Even my mother in law didn’t connect his behavior and told me that I was giving in too much and that the problem was that I needed to just let him ‘cry it out’ and just leave him with a babysitter. At this point the pediatrician has suggested a skin test, and we had even made the appointment…but a neighbor of mine suggested that I try her homeopathic doctor first. We jumped at it due to the fact that I was soooo dreading the torture of a skin test. She used a meridian stress test and identified diary, corn and wheat as his problem foods. Within a week of changing his diet even our friends and family commented on his change of personality. In about 3 months he was actually seeking out and initiating interaction with people that would completely ignore in the past. Now a year later (he is 2) and still has some 2 year old issues…but for the most part is a changed child. We are pretty care full about his diet and have also identified any artificial dyes as a trigger for him. Every once in a while something sneaks by us and we can tell with in an hour that he has gotten something that he shouldn’t. It is during these times that we ask ourselves how he could have possibly lived with these tantrums and attitude for as long as we did. He is still our ‘more difficult’ child…but is an absolute joy to us! We have changed our entire family’s diet so that it less likely that he will get something he shouldn’t and my husband and I have both noticed a huge difference in how we feel! I can’t wait to try these marshmallows…we are going camping this weekend and there are somethings that you just can’t help but miss!

  25. sharron says:

    sounds so much like what we went through with our oldest daughter (still at times wonder if gluten is a factor, but the blood work said no) to find out it was dairy and egg… she was the poster child for excema! It is mostly gone… I can tell you that at age 11, almost 12..she is a happy pre teen, still some moments that i feel are probably normal for a girl! The teen years are upon us and I feel hopeful! Good luck!

  26. Monica says:

    Like many of you, we had a similar experience. My oldest daughter was a preemie and the ICU nurses labeled her difficult that first week of life she spent in the hospital. They claimed she was the fiestiest preemie they ever saw. Then they blamed us for rubbing her bottom raw during diaper changes because it was all red and a bit of skin was gone. We were horrified and knew we hadn’t rubbed her skin off. She was super fussy and had digestive issues. She seemed in pain. Eczema, insane diaper rash, gas, pain, ear infections galore, etc. As time went on, we suspected allergies. Her first pediatrician told me it was impossible for children under 3 to have allergies at all. The diaper rashes must be due to neglect. I was actually setting my alarm for every 3 hours at night to change her to keep her dry 24/7, but they still blamed me. Nothing is worse than wanting to help your child and you don’t know how and then top it off with others saying you are the cause. Ugh! Her behavior was terrible and lots of tantrums, spaciness, poor balance. Then sometimes, totally a sweet love bug. We took matters into our own hands and did a rotation diet. Eventually avoided artificial everything. She is allergic to wheat, corn, soy, dairy, chocolate, and several fruits. When she accidentally eats the wrong thing, her behavior changes within a couple hours and lasts for 3 long days. Her preschool also felt we were making up the allergies even though they could see the rashes. They just didn’t believe food could change your behavior. Decided to take her out of school and with a controlled diet, we have our loving, caring, girl on a regular basis with good consistency. Phew! Wish us luck for kindergarten this fall.

  27. Marilyn says:

    I too was looking for a corn-free marshmallow recipe and found your story. While my son’s problems were less complicated, we did have difficult times 30 years ago trying to figure out the puzzle. Food and environmental sensitivities were the main problems for us and fortunately we found the Feingold Association. There weren’t a lot of groups like this in the 70’s so this was a great place to start for us. We did expand into other dietary and chemical problems but the thing I think you might find helpful from the Feingold Association is their resource materials for folks on special diets. They have books to help you help your child follow their food program! I suppose there are many similar books out there these days but it can’t hurt to have plenty of things to choose from when these are the day to day situations you deal with for your child or yourself.

    I would also say to hang in there! What you are doing to help your child (and your family) have a better life is definitely worth it! Our son could barely focus, didn’t sleep, had poor motor skills, the list was long. Now he has grown into a very responsible adult with his own family. He is a glass sculptor who must stay extremely focused and use a wide range of fine motor skills. In helping him, I also discovered that I had many food and environmental issues as well. Keep up the good work. There are so many more options and awarenesses out there today but it is still a challenge to stay ahead of the game.

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  32. demi says:

    your daughter’s problems sound a bit like myne.one thing i noticed is that doctors all over the world think we are nuts when we say that food is causing us problems.at least you got to the end to see why she was behaving like that.i started having problems when i was 17,now ia m 30.but in my teenage years i didnt get any height.doctor did all tests in hormones and said i was ok btu she couldnt understand why i was only 1.51cm with such good hormones.i was eating like a pig but didnt gain any weight.and noone ever thought to test me for gluten.noone.so in my 17-18year old when i had more problems ,like going breathless and have so bad acne,plus PCO,etc…a homeopathist finally told me that i have gluten intolerance and dairy and i shoudl also avoid sugar.i didnt beleive him at first but when i got gluten free and seeing my blood tests also that eh made…i beleived him.usual doctors always said i was nuts and that i should go to a therapist.never did.but i am thankful that this man came to my life and opened my eyes.sadly it was too late to regain my lost height…hahaha..darn!!!!if doctors found it when i nwas 13-14..i could have gone taller!!!snif snif!!…well so the point is that trust yourselves and get second and third opinions.when your body tells you sth is wrong,listen to it.dont shut your ears!

  33. bluebell@mailinator.com says:

    This may be of interest to you all: http://www.breakingtheviciouscycle.info/beginners_guide/beginners.htm

    This diet made a huge difference to people I know with celiac disease, autism and a variety of other intestinal issues.It was written by my friends grandmother. It is based in science and sounds like you have already implemented most of what it reccomends but it still may help.

  34. Thanks! The book is part of my collection. . .and we are now a grain free family.

  35. Rhonda says:

    Wow..,if you edit out Mackenzie and substitute Declan….our journeys have been almost identical. In one sense we were lucky that Declan was diagnosed with “autism” which afforded me a wealth of resources for GFCF. We started when Declan was three as GFCF and did biopsy at 4.5 for a diagnosis of Celiac. We also do supplementation of DHA AND B12 injections which we also see clear changes when I am inconsistent. I have gone grain free due to my joint inflammation and pain. We also do fermented beverages for probiotics and are about to start incorporating fermented vegetables. I am now considering grain free for my son since reading your story. Thanks for sharing and PLEASE continue!

  36. My youngest girl, Kelsey was on the verge of an Asperger diagnosis but we haven’t moved beyond SPD (Sensory Processing Disorder -or- Regulatory Disorder). I haven’t thought about B12 injections. . . I’ll have to chat with our naturopath.

    I swear grain free is making a huge difference. The kids are getting more carbs than I am in the form of potatoes/tubers and some natural sweeteners (honey, palm sugar). I bake a fair amount of treats for them as well, like coconut flour muffins from elana’s pantry or almond flour biscuits.

    What fermented veggies are you adding? I’m finding some resistance . . . but the kids love yogurt, kefir, and kombucha.

    Thanks for stopping by!

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