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posted at 07:13 am on 05-15-2010
Just a quick celebratory writing.
Last night my daughter woke me up. We were up for several hours.
She had to poop. This is the first time in her LIFE that she has had to STRAIN or PUSH to poop. The poop made a loud PLOP sound as it hit the water.
If you don't have a kid with a bowel issue you may not understand why this is a reason to be happy.
For my child this means that her intestines are healed!!!! I am so happy!!!! It has taken almost 1 and a half years, but the gluten is all out of her system!!
(note: the several hours is not that she was pooping for several hours, just that the sensations were new to her. The first gradual sensation that she had to poop took her some time as she is used to just grabbing her butt screaming "potty emergency" and runnning to the toilet. Pooping took no longer than pooping should, but she then had to spend a long time processing this new experience.)
Advice for parents considering gluten free diets
posted at 10:21 am on 03-24-2010
To avoid all the mistakes I made, this is what I would suggest.
1) Before any diet changes write a list of all physical / behavioral symptoms you think are related to food.
2) For at least two weeks keep a food log. Write down (with times) every food the child eats and any of the physical / behavioral symptoms you are looking for.
3) After two weeks review the food log. If it seems to support the theory that some food is causing the symptoms start calling doctors. If you can, identify which foods. THere is not point cutting out the gluten if the log indicates the child is reacting to dairy etc.
4) Start calling doctors. Find the doctors with the best reputation and make appointments. You will want to have a pediatric gastroenterolgist and a good dietician lined up. You can always cancel if you don't neet to go.
5) Have the pediatrician administer a celiac test. This must be done before the child is taken off gluten.
6) Take the child off of gluten. Be sure to continue the food log.
7) The pediatrician celiac test results should come in. If it says celiac contact the local celiac group and get help. Celiac disease will require a serious lifetime commitment! Be happy you are already on the list for a good gastroenterologist and dietician.
8) If the test reads negative, but the food log indicates response to gluten it could be non-celiac gluten intolerance.
9) Continue with the food log but go off of gluten.
10) It may take as much as 6 months for the gluten to leave the system, so you are looking for an initial withdrawl period followed by gradual improvement. Keep the appointement with the gastroenterologist, be sure to bring a copy of the food log with you.
Keeping to a gluten free diet is tough. For us it is actually much easier than it was living with my daughter when she was on gluten, constantly sick, and having cyclic tantrums. After about 3 months you will find that you have some stand by recipes and restaurats and that you are used to packing picnics wherever you go. For us eating gluten free is now a very healthy pleasurable lifestyle, for a family without a gluten-intolerant person eating gluten free is a pain in the butt.
Putting it all together
posted at 06:59 pm on 01-17-2010
So, now that "the diet is over" as my daughter says, and I have learned more about gluten and food intolerances and aspergers I can look back and see exactly where I went wrong. It is somewhat cathartic to do this, which is why I am writing it down. Maybe some other parent may find him/herself in a similar situation and they could learn from my mistakes without having to actually waste their time/money/sanity themself.
First, I was unable to breast feed due to my own medical issues. As most infant formula has gluten in it, so from the time she was born she always showed symptoms and I didn't have the luxury of a breast feeding parent to see that her symptoms changed based upon diet.
At that point her symptoms were red cheeks, a runny nose, an inability to sleep, and dark circles under her eyes. I chalked the dark circles under her eyes up to an inability to sleep, the runny nose to being a winter baby, and the red cheeks down to dry skin from constantly having her nose wiped.
As she grew her poop never changed from the the runny baby stool to solid stool, but she was our first child and we never questioned, not having extensive experiance looking at dirty diapers we figured it was solid poop that got smooshed up and mixed with pee.
As she started solid food she absolutely refused to eat fruit. She would eat vegetable baby foods, but no fruit. Her dark eyes, red cheeks, and runny nose were more pronounced. I thought she was just catching every cold on the block since she didn't get enough nutrition because she refused fruit.
Flash forward a little bit to when she was about 2. By this point I was becoming obsessed with nutrition. Everything, including bread and granola bars, were made at home. I was doing everything in my power to get fruits and vegetables into her (she had stopped eating vegetables while I was pregnant with our second girl). I eliminated sugar from our diet, replacing it with honey or applesauce in my recipes thinking that would calm her sometimes manic behavior and help her to sleep. I would make whole wheat /flax seed/ banana applesauce pancakes for breakfast, and then bake spelt oatmeal cranberry raisin nut bread for snacks throughout the day. I snuck oat bran into her yogurts.
As we began toilet training it was very apparent that she couldn't control her bowels. I tried eliminating dairy (which was very difficult since my husband was a firm believer in the benefits of dairy calcium for growning girls). I was obsessed, we actuallly had to go to marriage councelling over this! My husband eventually agreed that she had diet issues. For whatever reason when he agreed to cut out dairy he began reading about how healthy asian diets were. He started cooking a lot with miso, he also upped his use of soy sauce.
By now, looking back, you can see the pattern. We knew something was up, we tried to get healthier, and in doing so we increased our intake of gluten astronomically. There was gluten in the spelt, oatmeal, whole wheat, oatbran, miso, soy sauce, as well as gluten from the store bought dried raisins and cranberries and blueberries and "dry roasted" nuts we were feeding her.
I only knew of gluten as it was referred to in cooks illustrated as being a protein in wheat that helped bread to rise. I had no idea it was found other places. The first place I read about gluten intolerance was in a DAN! book, not knowing anything about who DAN! were, but their desription of gluten intolerance fit my daughter to a T. I also, at this point knew I should call a neurologist, however, the one with the first availiable apppointment turned out not only to be a DAN! follower, but also somewhat of a scam artist.
Looking back, my first mistake was thinking all her problems were somehow connected. Her food preferances are not as much a characteristic of gluten intolerance but of aspergers. Her "miracle recovery" when we started the gluten free diet had nothing to do with AS, just releif that she no longer had gastrointestinal distress. Had I known about either her gluten intolerance or her aspergers earlier then I would not have had to put my whole family through the elimination diet. Had I known what gluten was then I would have tried to eliminate it when she first strated the toilet training. I can see why so many people beleive in the DAN! stuff, there is probably an overlap of kids who have food intolerances undiagnosed and whose improvement, along with therapy services, makes it look as thought they have miraculously recovered from autism. I don't want her to "recover" from her aspergers.
My second mistake was not taking her to an allergist when I suspected dairy intolerance. I don't really know why I didn't do this. I thought that you took kids to see the allergist when they broke out in hives, or swelled up, or their whole face turned red. I had no idea that you could take a kid to an allergist for having a runny nose and red cheeks. In my defense I did mention to the pediatrician that she was having problems with the toilet training, but the pediatrician was like, some kids take more time at it than others. At this point my instinct was like "this is really not right," but I felt that I had to wait for her to be older before I brought it up again. That was probably my biggest mistake.
My third mistake was not looking at other parents. I prided myself so much on keeping a healthy household and cooking from scratch that I never saw the distinction that I kept things so healthy because I NEEDED to whereas they were able to have sweets and treats every once in a while because their kids were healthier than mine. This mistake was sheer hubris. I need to learn from it.
My next mistake was following the advice of the first available doctor rather than the most reputable doctor. This, I suppose is understandable in that I really needed advice and my pediatrician told me that the neurological stuff was beyond her. At this point it would have been wiser to see a different pediatrician or to ask who she would recommend or which neurolgist she had worked with before.
There were a lot of things I wish I could have done differently. I suppose the purpose of hindsight is to learn from ones mistakes, rather than wallow in guilt about them. I am really really really trying to learn from this. I still feel guilty. I have a lot to feel guilty about.
Good News we are now just GLUTEN FREE!!!!
posted at 07:11 am on 01-01-2010
We have been able to reintroduce all foods back into her diet except for gluten (obviously)!!! Thus, now she can return to a semi-normal childhood, eating things like yogurt and gluten-free cereals (many of which have either corn or soy in them!!!) As of now we have not tried straight cow's milk with her, but she has been able to tolerate goat milk really well! She has also had one entire cup of cow milk yogurt with no ill effects!! The negative reaction to the soy appears to be that we had had soy at a gluten free chinese restaurant. Going back to that same restaurant she had the same reaction, but drinking a straight up glass of soy milk she had no reaction, so we are thinking that the restaurant is not as gluten free as it claims. This is a shame, really, since they are supported by the local celiac awareness group and should know better. My husband and I are so excited!!! We can now bake with eggs and corn derived baking powder!!!! My husband wants to start baking his own gluten free breads!!! He has been dying to bake, but the lack of ingredients made it hard.
Please tell me I'm just crazy
posted at 07:24 pm on 12-04-2009
So I took my daughter to the pediatric endocrinologist today. The reason we went to see the endocrinologist is that the pediatric gastroeneterologist looked at my daughter's chest and felt her up for about 10 minutes and asked if I'd ever noticed she was a little too developed up top for a person her age (3.5 at the time). I told him I thought she was just pudgy. He gave me a referral and recommended I see a pediatric endocrinologist about pediatric thelarchy (premature breast development.) He then went on to explain that she may be hypersensitive to estrogen. As you can imagine, this was just about the last thing a mom wants to hear. Puberty early, really really early.
Anyway, as we continued with the gluten free diet she slimmed down a bit, grew a bit taller, and appeared to "grow into" her breasts. This is pretty common in premature thelarchy and I was hoping I could put the entire thing down to bloating and general system malfunction due to gluten.
We began challenging new foods. She tolerated eggs ok. She tolerates corn ok (although she gets a massive sugar rush from it and treats gluten free whole 'o's' the way other kids treat m&m's. We then went a bit wild and thought it would be safe to try gluten free soy. We went to the gluten free chinese restaurant for dinner. By bath time that night (about 3 hours later) she was bloated again and the breasts had returned. I really really did not want to beleive that this was happening.
Her birthday came soon after, and the place we had ordered the cupcakes from puts soy in their icing. I am very limited in my options of where to get food since we still have not yet added dairy back in. There was only a little bit of soy in the icing. I ended up not being a the party (I got taken away in an ambulance, long story) so I didn't get to see her eat the cupcake. I did notice afterwards that while she wasn't bloated she did have a bunch of pimples around her mouth and one on her lip that looked like a cold sore.
The pediatric endocrinologist told me that all that could be related to soy intolerance. He looked at her breasts, said there was nothing unusual, then he ordered a lot of blood to be drawn and gave me a 'script to have an xray of her arm taken so he could look at her bone density. I got the blood drawn, but didn't stick around for the xray (there's only so much you can really put a four year old through in one day!)
I don't want to do this anymore. I don't want to continue being the "diet dragon" and constantly thinking about all the things we can't eat! My poor child looks almost like she's developing a paranoia about allergies, and I don't blame her. I don't want to put her through the xray. I don't want to have to drag her to yet another doctor for yet another blood drawing ever again. What are the chances that I'm just a vicarious hypochondriac? Is it possible that it's just me that is crazy and there is nothing wrong with her. In all truth, at this point, I'd rather that that were the case.
Anyone out there with anything similar? Does anyone know anything about food intolerances?
Sensory vs Sensitivity vs Strong Willed
posted at 12:05 pm on 11-15-2009
I have never written a blog before. I am an internet neophyte. I'm not even sure I can use a chat room correctly. I am a mother with some serious concerns about my child and I am faced with some tough decisions. This is my story, expanded from what I put in a thread on yeast issues not too long ago. If anything in here makes any sense to you and you can help me find answers, great, please let me know. If anything in here makes sense to you and helps you find answers, I'm very glad I could help. If you don't have answers but candirect me to a good book or websight I'd be more than willing to take a look. I am writing this based on the advice of DW_a_mom, who read my entry in the yeast thread and thought something about what I said made some kind of sense.
From before my daughter was born she has been different. Literally, the sonogram tech said "Wow, if it keeps moving like this you've got a firecracker on your hands."
When my daughter was a newborn she didn't sleep. The only way to get her to sleep was with a bottle and to have her sleep on top of someone. Even then she could only sleep at most 2 hours at a time. She was also a very kicky sleeper. At about 3 months my husband and I developed shifts, one got 4 hours in bed alone, the other 4 hours on the sofa with the baby (she slept best with the T.V. on Food Network.) Other than not sleeping, she was very healthy, growing, and astoundingly alert and attentive to all around her. She was a very smiling child.
When my daughter was about 6 months old she was starting to say clear words. By 7 months she said her first clear two word sentance, "Fuck You!" I had had to put her down for a minute. She was one of those babies who could NEVER be put down, constantly in sling or backpack, or sleeping on top of one of us when she slept.
By 8 months old she was walking independantly. When she was 13 months old she woke up on Christmas morning, looked at her stocking, and said clearly with expression "Christmas is magnificient!" By the time she was 15 months old she could find Antarctica on a map and tell me that was where the penguins lived. If I asked she could also find Australia, and tell me that was where kangaroos and koalas came from.
My husband and I were very tired people. She still had problems sleeping. Ferber worked, but it was only a last resort for us after I had our second child and our first (the daughter this writing is about) was still not napping! Still we were very happy parents and thought we had a young genious on our hands. At 18 months old she wowwed her grandmother by saying, clearly and distinctly "Grandmother, put the rhinocerous in the groceries bag. I need it!!"
My daughter clearly (in retrospect) had sensory issues. At the time I was unfamiliar with what sensor issues were and thought she was just a "quirky" kid. She could not tolerate the sound of a vacuum cleaner. It would throw her into a rage!! She would run about emptying shelves, overturning boxes, and bashing her head against the wall. She would bang her head against the wall whenever I brushed her hair.
From the time we started solid food my daughter was a selective eater. She never liked fruit (even babyfood!) her favorite babyfoods were string beans and spinach. What mother complains when her child loves spinach? her first solid food was spinach with vinegar. Eventaully she loved spinach with vinegar so mucht that I would pack it as a snack for outings. You don't know stinky until you small a diaper bag full of spinach and vinegar after a long hot afternoon at the playground.
By the time my daughter was 19 months old she was drinking tobasco sauce straight from the bottle. She was addicted to stoneyfields yogurt. So addicted, in fact, that I stopped buying it. She refused to eat anything until I bought it, eventually passing out from hunger!! I became a very sneaky chef. The only way to get fruit or vegetables (other than spinach) into her was to bake them into muffins and/or microplane them into sauces. I became a master of the whole-wheat/flax seed spinach blueberry carrot muffin.
You get the idea. Problems sleeping. Very intelligent. Strong willed. During this time I had a second child, and completed my masters degree, so when the regression began it was at first thought to be a reaction to becomming an older sister and/or mommy "working" alot.
At 2.5 years old my daughter began having tantrums. She had never had tantrums before, so it took me a while to catch on that this went beyond the extent of normal tantrums (she did, literally, tear the molding off the wall of her bedroom.) These were not normal tantrums. By three years old my duaghter learned to read and the tantrums became cyclic. The tantrums would start with an undulating whale-song frequency in her voice. After whale-song she woud progress to stuttering. After stuttering she would then become violent with a gutteral animal like screaming. After violent she would become self injurous and overwhelmingly in despair. The only thing I could do would be to hold her down, wait 'till it passed, and then try to help her handle it. After a tantrum the discussions would be like this.
Me "What's wrong"
Her "What's wrong is I'm upset."
Me "Why are you upset?"
Her "I'm upset because I'm having tantrums."
Me "What can we do to make it better"
Her "A glass of milk. A glass of milk would make it better. And maybe some banana bread would work too."
At about 3.5 years old the tantrums were nearly constant. The first would begin about 20 minutes after beakfast. The cycle would last about 2 hours from whale-song to tearfull exhaustion, she would eat something and it would start again.
I began fighting with my husband. I tried cutting out milk, but he (having experiance cooking French and Indian cuisine at restaurant level) would find ways to sneak in some yogurt, or a cream sauce, or let her have some of her baby sister's milk.
I thought maybe it was poor parenting. I knew my child was highly intelligent and I figured maybe gifted kids throw gifted tantrums and pull gifted power struggles. I read a bunch of parenting books. I covered the house with earnings charts. I developed a sticker system to reward any trace of positive behavior. Nothing worked, she was becoming uncontrolable. Her sleep was deteriorationg as well. She lost the ability to stay in her room by herself during "quiet time".
I was exhausted. I read every parenting book I could and eventually came upon Keneth Boch's 4-A book. His chapter on gluten-casein intolerance appeared to fit my daughter to a T. I cut out both gluten and casien. My daughter had cold sweats for two nights running and her entire body shuddered!! It was HORRIBLE!! It was one of the scariest things I have ever seen a child go through!! Her tantrums stopped immediatly. I knew I was in over my head. I took her to the pediatrician and called every neurologist I could think of. the only neurologist without a 5 month waiting list was a Hollistic DAN! neurologist. I made apointments with everyone.
The DAN! neurologist took a bunch of blood tests and stool samples. She told us the tests proved that my daughter was allergic to gluten, casien, soy, corn, eggs, and peanuts. She told us we had to replace any pot in our kitchen to which a magnet would not stick. (to avoid toxic metals leaching into our food). She referred us to a DAN! nutritionist.
My daughter's tantrums stopped. Now that she was no longer screaming incessantly I noticed that her language was no where near as good as it had been. She was not "delayed", but she certainly could not longer say the word rhinocerous or put together a three sentance paragraph. Her eye contact was not very good at all (something I had not noticed before the tantrums began) She also was noticeably less socialy able than her younger sister. Activities that she had previously loved, like jigsaw puzzles, were no longer interesting to her. Sleep was very hard and she did not want to be left alone in her room. She would scream and beg for me to throw away her toys, that the toys were screaming at her. She begged me to cut her eyelids off with nailclippers so that she could never close her eyes again.
I took her to a child psychologist, who serendipitously happened to have celiac. He explained all of her troubling behaviors as stemming from gluten intolerance. The toys screaming was really the buzzing sound of migraines. She didn't want to close her eyes ever again because she was seeing migrain flashing lights. I did some reading and found that it can take several months for gluten to leave the body. Sure enough these symptoms faded as we kept her off gluten.
The DAN! neurologist and nutritionist took away a new food group whenever we spoke with them. She likes spinach, must be because she has a sensitivity to salyciliates. Her cheeks are bright red on a hot day, more hidden salycilates, maybe try cutting out the almonds and walnuts. Crispy anchovy snack! Stop shopping at the asian market! The DAN! neurologist told us she had "leaky gut" that her intestines were bleeding, and then told us NOT to call a gastroenterologist.
I called a gastroenterologist. Our appointment with him came up after being gluten free for nearly 3 months. He put us back on gluten for 1 month, to check for celiac. It was not a fun month. (If I knew how to put a link or make a quote I would refer back to the bagel episode from my post on yeast) The DAN! nutritionist and neurologist decided we should do a "biofilm" treatment. Essentially they wanted to strip my daughters digestive tract of all microorganisms and rebuild it from scratch. They could not tell me clearly why they wanted to do this. They did not tell me what the possible side effects for doing this could be. (Like, maybe she coudl DIE!!!) I chose not to do it and to not see them again.
We took her to an allergist who did a skin prick test and said that she wasn't allergic to anything. He said the tests done by the neurologist were a bunch of voodoo. According to him, and he explained this very well, if you eat something frequently then traces of it will show up in your blood. The ONLY way to know if you are intolerant is through "challenges," to eat create a chart of suspected symptoms, stay off the food for a month, eat the food for 2 weeks, (preferably in a double blind way where my husband sneaks the food into her on random days without telling me and I chart suspected symptoms as I see them) and compare the chart of her reactions on the food (double blind) to her reactions off the food.
Our appointment with the mainstream neurologist finally came through. She diagnosed my daughter as having aspergers syndrome. She told us the diet was a bunch of garbage. When I asked her about celiac she looked dubious, said my daughter look healthy, but we could get her tested if we want.
Our test results from the gastroenterologist came back. My daughter apparently has non-celiac gluten intolerance.
We are now trying, with the advice of the allergist, to see which foods we can put back into my daughter's diet. I believe some of my daughter's food related issues are sensory. I believe some of her issues are related to intolerance. At this point the only way to know is to try each food one at a time. To me this feels like playing russian roulette. We gave her eggs, nothing bad happened, and so we are now expanding her diet to include eggs. We gave her a half box of raisins, the cyclic whale-song tantrum returned and she wouldn't eat for 2 days! I HATE thinking that I can be hurting her by giving her forbidden foods!! Some of what we lived through was so scary I can't even bear to think about it. At the same time I want her to eat a variety of healthy foods and I don't want to punish her by keeping her from all the foods/tastes/textures she loves.
At his point, I beleive my daughter has both aspergers and several serious food intolerances. She has serious problems developing social skills, but really wants to make friends. I do not think that keeping her away from foods she can't tolerate will cure her aspergers. I don't want to cure her aspergers, she is intelligent, loving, in many ways a young genius. I am starting to wonder if sensory issues related to aspergers are making it difficult for me to pinpoint which foods are a sensory issue vs which foods are a sensitivity issue.
Thanks for taking the time to read. If any of this makes any sense to you, please let me know. If you can relate to any of it, please let me know.