Saturday, January 14, 2012

Short Anagen Syndrome ~ Part Two

You can read part one of this post to know more about how we came to the Short Anagen Syndrome results and this post will explain why we are going gluten free. 

Last week we had Karley tested for Celiac Disease to rule out a severe gluten issue.  Gluten seems to be beocming more of a link to SAS/LAS.  I had hoped that Celiac Disease was the answer, but after a lot of reading and talking with my sister, I realized we do not want her to have Celiac Disease.  With CD are a lot of other negative things that can happen.  I also now realize that CD and gluten intolerance can be different, at least that's what I believe to be true, although I am not a medical doctor, just a Mom with a hunch.

While we waited for the CD results to come in I got a book from our library called, What's Eating Your Child by Kelly Dorfman.  I find it fascinating, with one problem, it's going to cause me to break my New Year Resolution of not buying books for 2012.  I have the brand new library copy and want to underline like crazy.  Contrary to what our ped doctor says, I do believe that Karley could have a sensitivity to gluten without having Celiac Disease.

Also, while waiting for her test results we took her to a chiropractor/nutritionist.  He performed a couple of tests {I did not mention my thoughts on her possibly having an issue with gluten}.  He came up with a few things, two major.  She is not breaking down her protein {hence the hair growth} and has a gluten sensitivity, maybe that's one in the same.  He recommended a few things among them gluten / dairy free and re-visit in 30 days.  Because I am measuring hair growth I want to do this for three months minimum.  {Please pray for us that we can do it for that long and of course success.}

I also want to add one of the reasons we decided on researching the gluten free avenue was that a friend from the facebook group e-mailed me pictures of her daughter explaining how she arrived at going gluten free.  One of the things that she mentioned was that she had a chance encounter with Dr John Kim who suggested going gluten free.  She was kind enoug to send pictures that reflected noticeable changes, food suggestions and how to shop.  What a blessing! 

Our ped doctor called to confirm that Karley does not have Celiac Disease {Praise God!}.  The doctor has little faith that going gluten free will work, that it's a fad diet and that if a person doesn't have Celiac Disease they aren't sensitive to gluten.  She did offer that going gluten free won't hurt anything and wished us the best of luck. 

And I'll take the wish for luck, we probably will need it.  Any prayers that can be offered up for Karley {and her food providers} would be even more appreciated.

Now it's game on. 

This morning I vaguely filled out a one week meal plan {I can usually breeze through two weeks}. It was a little harder this time around.  I did get a little advice from Misty and a few other tweeters and I was able to pull together a list.  I have a few more recipe books coming as well.

Our plan was that together as a family we would go gluten free in hopes that Karley would see little difference.  My thought was that things would be a little more expensive but I had no idea just how much.  Needless to say, when it comes to buying pasta, I will be making gluten free for Karley only.  It's expensive.  I also need to learn where I can get more for our money, where / when to make things differently for her.  I can see one challenge will be school snack.  They have to bring a store bought snack to share.  So for two days a week I have to come up with something relatively inexpensive for her to eat {willingly, while other kids are eating fruit snacks}.  At home we'll all be eating more fruit and veggies, but school will be different. 

Needless to say, I am feeling a little bit of an uphill climb right now.  It was thinking I would be able to make anything with gluten free flour.  That doesn't seem to be the case, instead there are many ingredients that need to go along with the gluten free flour.  I will forge on, do more re-search and find better ways to shop.  I'll stick with one week at a time in hopes to not be so overwhelmed, thinking about how to do this.  Baby steps.

I hardly think gluten free eating is a fad.  It seems it can be a difficult, expensive way of eating and at times not quite as fun ~ who doesn't think pizza is fun?  I also realize that we are lucky to have so many options today compared to 5-10 years ago!

Any tips, tricks and shopping advice is greatly welcomed! 

I will post some things I learn along the way and hopefully be able to post progress reports.

A huge thank you to all who have shared your thoughts, prayers, concerns and advice.  We love our little girl as she is, we only hope that we can help her in her hopes and dreams, now and forever.




In Christ,

Tina

35 comments:

  1. We are also from the Facebook group and tring a gf diet to help Malika. I've been thinking she has LAS as her hair sheds a lot, but her hair looks a lot like your daughters. I heard the same stuff, that it would grow, and everyone has a story of someone they know who didn't get hair until they were _. We even took her to a dermatologist who just ran her fingers through her hair and said it was normal and would grow.

    Anyway, reason I'm replying is, I have searched GF foods and whelch's fruit snacks are GF.

    http://www.dallasrock.org/pdf/SchoolGFList.pdf, this website has a list of GF snacks.

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    1. This is list is a great list for school! Thank you so much Crystal! This just saved me a lot of time!

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  2. I found this website a few years back when I was on a quest to find more meals I could make in the crockpot. Their family eats gluten free as one of her kids has CD. I have tried MANY of her recipes and they are delicious! Hope this helps you! http://crockpot365.blogspot.com/

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    1. Thanks Sarah! I'm giong over there to find some recipes!

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  3. Glad to hear that the celiac tests came back negative. I also sympathize with shopping and menu planning. A quick note: Great Value (Wal-mart brand) Corn Flakes and Rice Krispies are gf. The malt that is in them is not from barley. Doesn't help much with cereal unless you are using soy or rice milk. I sent your books with Annie. She is going to bring them to Kristen's home tomorrow (Sunday) so you can get them then. Good luck and God's blessings as you tackle this food challenge. With God all things are possible (not easy, but possible.)!!

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    1. Thanks for all the books Mary! I've been pouring over them. I sure am learning a lot! Also, thanks for all the encouragement! <3

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  4. I have a short memory these days but did I mention that I have lots of GF/CF recipes on my blog under the low allergy foods tag? GF/CF doesn't need to be expensive. We don't buy any of the prepackaged stuff mainly because I have other allergies including eggs, nuts, corn and rice and those are often in GF/CF products. School snack would be tough. Potato or corn chips are an option.

    I've also done lots of experimenting. I bought a big bag of brown rice and it turned out the little girls didn't like it so I cooked it put it in the food processor with lt olive oil to make it smooth. Then I added sugar, baking soda, vanilla, cinnamon then baked some like cookies and fried some like pancakes. They enoyed those little treats.

    It's an adventure!

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    1. Hi Katie! I will check out your recipes. I hope the brown rice goes over here. We eat wild rice so hopefully it will work. You are very creative in your cooking!

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  5. Sarah is right - crockpot365 recipes are always gf and I've tried lots of her recipes and they have always been good. I have one of her cookbooks if you want to borrow it. I saw on fb that almond milk didn't go over well...I've found we use it more for cereal, making oatmeal, in recipes more than for straight drinking...maybe try it again in something or with cereal. If you are looking at saving money on groceries, don't think about just replacing things with gf options (like pasta, bread, cereal, etc)...try and just remove some of those things completely out for now. We do a lot of meat, rice/potato and a couple of different vegetables. We really like the Tinkyada brown rice pasta, but eat pasta less often now than a couple of years ago...it does add up if you are looking at spending $3 per lb -vs- $1 per lb. It's going to be way easier on you if you cook the same meals for everyone. Praying - Holly

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  6. I couldn't sleep and was thinking of you. I'm not sure what the other school rules are about snacks and these are convenient, but they would be cheaper than buying individual snacks for each kid.

    Applesauce, canned fruit, dry cereal like Chex Rice or Corn. My girls hae no idea about eating cereal with milk because I have always just given it as a dry snack. The individual fruit or applesauce cups would be good to send for an alternative snack for Carly.

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  7. HAPPY BIRTHDAY!!

    I should have thought of this yesterday (when I was at her house)... but my sister Moni has a lot of GF cook books too... she borrowed them to me a year or so ago... and I gave them back. If you want any more great resources, ask and I'll see if I can borrow them.

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    1. Thanks Kristen! I think I'm sitting pretty good with the books from Mary, the links here and google searching!

      Thanks for the birthday wishes too! :)

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  8. Praying for you that it all works out! I have gone GF, but just as a lifestyle choice, so I do not worry so much about if something has some Gluten in it. Since going GF, all our meals are GF . . . no more pastas. So far the family likes it. There are a lot of resources out there and so many blogs that have great GF recipes. I hope that this works for her!

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    1. Thanks Katie! I think even if this doesn't work out the way we hope and we go back to eating things with gluten, it will be very little. I have to say, I feel better!

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  9. So glad to read that Karley doesn't have celiac. I have a friend who has it. If you're interested, I can ask her for the names of the cook books she uses for her snacks and breads, etc. I do know one of her favorite sweet treats is fudge :o).

    I will be keeping you in my prayers. Changing eating habits for a full family is tough stuff!

    Blessings!
    Deborah

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    1. I am sure you know changing eating habits!! :)

      YEAH Fudge!!! {except get this, Karley doens't like chocolate}....her mommy does though!

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  10. Is it common with this syndrome to also be smaller overall? My daughter was small from birth(5lb.4.7oz.), and still is(43lb., 44", 6 years old). She has thin, blonde curly hair. I delivered her at 38 weeks, and breastfed for 10-11 months. I'm wondering about the causes you may have found(before or after birth), your progress with the diet, and the Minoxidil 5% solution. Next well visit is coming up February 13, 2012; I printed out an article from DermNet NZ to show her doctor then. I appreciate this article you wrote and have sent a request to join the facebook group, I'm afraid the group is not active from the looks of things though(last post May 4, 2011). Another question I have is when do most parents receive this diagnosis? I took her for bloodwork about two years ago to rule out thyroid problems and something else and these results came back fine. I was then told that she is normal and her hair will grow. Also, have you found any facilities that are actively researching this? And how rare is this? Is this becoming more common? Perhaps from chemicals commonly found in food these days? When I told my boyfriend about the shampoo he was concerned that Mallory will be self-conscious by talking about this with her. I am concerned about that but, I am also concerned that if her hair does not grow, she may be bullied in school(1st grade next year), and how she will cope as a teenager. I cried while I read about your little girl playing with hair and I would really appreciate some support with this. Thank you so much for writing this!!! Without it I wouldn't have been able to find the group or know about the gluten free diet. Good luck with your little one!!!

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    1. This reply is really for any new readers....I e-mailed a response back via my e-mail as I forgot about this but mostly I posted answers to her questions on a new post because a lot of the same quesitons were asked by another e-mailer.

      http://www.mypricelessfishers.com/2012/01/thougths-answers-on-short-anagen-loose.html

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  11. I just returned from the 5th doctor for answers. They all tell me it will grow but im starting to wonder if it will? She has one long strand down the middle. With everything being fine in her blood and it not coming out in chunks. I found this as the only answer I can give myself. My daughter is beautiful no matter what, she is who she is. Im just glad I found something to relate with. No one I know has ever seen or heard of it. One lady in walmart one day asked me why I cut my daughters hair that way.

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    1. My daughter also had one long chunk of hair down the middle that would grow. The rest stayed very short. So we had to get her hair cut often just to even up the middle part that grew. Which made her mad because that was the "long" part of her hair and she wanted to keep it long. But it looked weird if we left it that way. It did that from age 3-5 but finally, she is 6 now, and it is all growing in long now. Granted, the middle is still the longest, fastest growing part, but it HAS started to fill in.

      One thing to mention as a positive to LAS or SAS is this - when I take my child to the movies or theme park, most people think she is MUCH younger than what she actually is. Sometimes I correct them and pay the higher price. Sometimes I don't. And when she was 2 or 3 and talking up a storm with big words, people thought she was a very intelligent 18 month old because she had no hair. So see?? We just have to find the positives! :)

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    2. I often am asked if the youngest and Karley are twins. I think it's the hair because when the see the height difference they just get puzzled and say oh ya.

      I am glad to hear that your daughter's hair has started growing long! ;)

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  12. I am so sorry to hear about your experience both with doctors and with the lady at Walmart. I often think that somebody will say something to me/us. I wouldn't know what to say/do.

    Would you like to join the facebook group? It's Short Anagen & Loose Anagen (SAS & LAS) Hair Disorder.

    Please keep in touch if you come across any new information.

    Blessings,

    Tina

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  13. My little girl is 3 and her hair looks just like your little girl's. People keep telling me that it will grow, but it seems to not grow at all. It is thin, and wispy, and very short. I haven't had her diagnosed, but I will look into SAS. Thanks for your posts.

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    1. You are welcome! I am glad to be of some help or information or just knowing there are others out there.

      God Bless!

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  14. Could you please put the link to the fb page? I can't seem tO find it!

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  15. The group on facebook is called: Short & Loose Anagen Syndrome (SAS & LAS)

    Hope you can find it.

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  16. Tina, I just discovered your blog through a Google search. (I know this post is 2.5 years old; I'm sorry! I couldn't find an update.) My almost 5yo daughter has very very thin hair that barely seems to grow, and we've wondered for nearly a year now what role gluten (and/or dairy) might play in her long-term tummy issues. We did a GF trial earlier this year for 6 weeks and again later for 2 weeks, but I still can't figure it out (and that wasn't enough time to evaluate whether or not there was an effect on her hair growth). Do you have an update on how going GF worked for Karley?

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  17. My daughter was diagnosed in February with LAS. Dr. Said it improves through puberty. Have you seen any improvements?

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  18. My daughter was diagnosed in February with LAS. Dr. Said it improves through puberty. Have you seen any improvements?

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  19. My daughter was diagnosed in February with LAS. Dr. Said it improves through puberty. Have you seen any improvements?

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    1. I had SAS as a child and now I'm able to grow my hair to a little past my shoulders, and it looks totally normal. It did improve around puberty.

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    2. I'm so glad that your hair grew around puberty.
      My 10yr old daughter has SAS too.
      We are just wating to her hair grow soon.
      Your reply is so comforting. Thanks

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    3. I'm so glad that your hair grew around puberty.
      My 10yr old daughter has SAS too.
      We are just wating to her hair grow soon.
      Your reply is so comforting. Thanks

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  20. Just stumbled on this while looking through SA info. My daughter has very short, wispy blond hair. She is very fair skinned.She had an extra baby tooth in front and later found out she has missing adult teeth...she has a small crowded mouth so that wasn't a problem. She also has an unusual bend in her pinkies. With all these symptoms would would think some doctor would be able to find something. We went to dermatologist and endocrinologist and no answer..so we went to a genetics clinic. Diagnosis is trichorhinophallangeal syndrome. So we have a diagnosis but still no idea on how to help with hair growth. By the way she is 15 now...bullying was a problem in middle school. She has recently inquired about a wig, although she is very confident ..will get up in front of people and sing or play piano

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  21. So so interesting to read your precious story. I am on South Africa with 2 beautiful blonde haired girls now 7&9years old... we hv walked the same heart breaking road with both (just as well). Can so relate to the comments of people saying jus give it some time, or my children were just the same - blah blah! What age is Karly now? Can you report any change or improvement Tina?

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Thanks for making my day!