Fried and Battered

I’ve needed to take a little impromptu blogging break. We’re dealing with some significant health issues with my baby boy. But finally, praise God, we’re seeing a light at the end of the tunnel.

A very long tunnel. But I now have hope, so if I squint, I can see the end of it. That hasn’t always been the case.

Jensen has been diagnosed with severe Atopic Dermatitis. Simply put, he feels as though his skin is on fire, most of the time. He is miserable. He has trouble sleeping. And he can only look to us, his bedraggled parents, to make it all better. And so far, we’ve been unable to do that.

We’ve been doing our research, and trying many many different approaches, but, it seems that for every two steps forward, we take three steps back. This accounts for so many of his behavior issues. He is in pain.

And it has left me heartbroken.

This week, we met with a Christian holistic medical doctor in another town. It will take time, patience, and mean a lot of changes, but, he is very treatable.

HE IS VERY TREATABLE!

And unlike other Pediatricians we’ve seen, who simply want to slather him in steroids and hope he’ll grow out of it, this doctor goes about the business of healing the patient from the inside out.

I’ve been trying many different things with his diet, but this doctor has given me a very clear direction. Effective immediately, I have to take Jensen off of all dairy, wheat, gluten, and citrus fruits.

And here is the really great part! HE’S A REALLY REALLY PICKY EATER! And would eat only McDonald’s nuggets if I let him.

But there’s a new sheriff in town. One who is going to have to get awfully creative. With a bag of rice flour.

OH YEAH! And our little town doesn’t have a Whole Foods. Or a Trader Joes. A challenge, to be sure.

And he can only wear clothes made of 100% cotton. I just discovered that all his favorite blankets that he sleeps with are made of 100% polyester. Who thought that one up? Even his socks are not 100% cotton.

A while back, I started making my own washing machine detergent for his clothes. And I double rinse them and use those funny blue dryer balls, instead of fabric softening sheets.

I’m just like Ma Ingalls. Except I don’t have to beat the clothes on a rock by the creek. Yeah, I’m just like her.

Without going into all of the medical explanation, my boy is unable to digest many foods. This is also called “Leaky Gut Syndrome” and is linked to Candida, yeast overgrowth. For Jensen, it manifests itself as Atopic Dermatitis. He has a rash all over his little body, and he will scratch himself until he bleeds. He is now on very powerful probiotics, and oils, to boost his little immune system.

There is so much more to this, but I’m still trying to wrap my head around it, and there is still so much more research that I need to do.

I wanted to put this out there, to see if you all could help me, if you have any knowledge of this problem. Specifically, I’m looking for websites, recipes, cookbooks and tried and true products that can aid me in cooking for this little man.

Also, I want to find stores that sell clothing made of 100% cotton. Especially socks. And pajamas with feet in them.

(I did just order 3 pairs of size 5 pajamas with feet from Gap online. Woot!)

The diet that Jensen will be on is very similar to the diet used for kids with autism. And, thanks to Jenny McCarthy going public with her struggles and eventual cure of her autistic son, a holistic approach is more mainstream now. And there is a lot more information.

I am so grateful to have hope. I mean, this is not life threatening. And it is treatable.

And I am so grateful to you all, who are a listening ear when I need to just vent and ramble! Thank you, my bloggy friends!

May 14, 2008

67 Responses to Fried and Battered

  • I don’t have any answers for you, only prayers for your perseverance and for Jensen’s comfort and peace. I have a KitchenAide Stand Mixer, and with this mixer, I have the grain grinder attachment. If you can find grains that are gluten free, you can make your own flour. This website might help you get started http://www.csaceliacs.org/gluten_grains.php

  • Hugs Dee Dee – I had a similar bout with horrible rashes and was diagnosed with “allergies”. Mine was wheat/grasses ultimately and it is in everything. Once it was under control, it eventually just went away and now I only have sporadic outbreaks (2x a year), so I’m not nearly as diligent as I need to be.

    There is a whole world of info out there and once you get food figured out it isn’t as overwhelming. (Check the ingredients of his vitamins)

    Blessings! Kim

  • I’ll be praying for little Jensen and for wisdom and strength for his momma and daddy! I’ll also be keeping my eyes and ears open for tips and websites to help you!

  • Being Gluten free isn’t as hard as it was even a year ago. My youngest daughter last year figured out that that was what was causing her the health issues she has. Shopping is getting easier as more people are aware of wheat and gluten allergies.

    Check out the local grocery stores – although some only have a token amount of GF foods, others can offer quite a variety. I have a regular grocery store right around the corner from me that has more GF products than I’ve seen in any health food store.

    Check out Gluten-Free Girl – great site and wonderful receipes as she’s married to a Chef – she has a book out too!

    http://glutenfreegirl.blogspot.com/

    Here is another site… my daughter uses a lot of these products. Loves the brownies and Pizza dough. I especially love the Mighty Tasty Hot Cereal.

    http://www.bobsredmill.com/gluten_free_info.php

    I’ll keep you in my prayers as you find your way through this jungle… there are paths there – you will find them.

  • DeeDee,
    My daughter has severe food allergies. Severe. There is only a handful of things that she can eat.

    She can not eat any grain/wheat/gluten. Buckwheat is not a grain, and if you get light buckwheat, it is great.

    I make 1 pancake for her using

    1/4 c. buckwheat
    1/8 tsp. salt
    1/8 tsp. baking soda
    1/4 tsp. cinnamon (one of 3 spices that she can have)
    1/4 c. pear juice
    1/8 c. pear sauce (babyfood pears~she is allergic to sugar in all forms…honey, molasses, splenda, etc.)

    Mix it together and fry in the tiniest bit of coconut oil (she is allergic to fat). I have tried it, and it is delicious.

    My sister also has Leaky Gut. Ground flax seed is wonderful for that. I also substitute 1 tbsp. of buckwheat with 1 tbsp of ground flax in the pancake for her.

    I am quite sure that you have heard this, but read. every. label. Including any OTC medicines. My daughter can not have anything OTC, (due to the sugar content, wheat content, and citrus content) except Equate brand Ibuprofen soft gels, and the Zicam nose swabs.

    I also get her vitamins from the Health food store that are specifically made for those with food allergies. You have to have a docs prescription for those.

    Feel free to email me if you have any questions. I have been dealing with this type of thing for over a year.

    Hugs and prayers for you and your little guy. This just doesn’t effect him, it effects everyone.

    No more running to McD’s for a quick bite. You have to plan ahead for everything. You have to send food for an overnighter. It encompasses every aspect of life.

  • My friend has the same condition. She has finally gotten it under control. She found that shampoo/conditioner and other products often have wheat protein in them and these were contributing to the problem. You might want to check that out. She uses products from the health food store and calls the company before using anything to inquire about the ingredients.

  • Dee,
    I’m so sorry that your little man has been going through this. Thank goodness you are now seeing a doctor who seems able & willing to help you, especially the way you want.
    Unfortunately, I don’t personally know of any web sites for you to look at. I have a nephew who was on a wheat and gluten free diet for about a year. My only interaction was making his birthday cake (which I found great cake mixes at one of our large local grocery stores), but I know she found LOTS of web sites. Also, allrecipes has in their advanced search function the ability to specify dietary needs like wheat free.
    I know also there are lots of internet stores that sell only natural fiber items so I know if you search a bit, you will find some that you can buy the clothing and bedding you need without having to spend a fortune!
    Good luck and please keep us posted on what you find and especially what works for you. You never know when someone might be searching for the same answers down the road and you’re able to help them!

  • Poor little fella. Nothing in the whole world is worse than when your baby is not well and you don’t know how to fix it. Sean has been on rice milk since he was off formula. Just be sure to shake the carton well before serving because the nutrients settle to the bottom. Or so I’ve been told.

  • I’m praying for Jensen and for you and the rest of the family, that God will direct you as you search for answers and that He will lay His healing hand on your baby.
    The only website I can recommend for alternative recipes is a blog called Our Story (www.zumfamily.blogspot.com) Janeen has a son with very severe food allergies – he can’t eat wheat/dairy/egg/nuts/ etc… – and she has adapted so many recipes for him. She has turned her site into an allergy awareness kind of place and I know she’d be able to help you find great cookbooks/products for your little guy.

    As for clothes, check out The Natural Baby catalog (http://naturalbaby.stores.yahoo.net/). They sell only natural fiber clothing and an assortment of homeopathic/holistic lotions and shampoos, etc. They can be expensive, but they usually have good sales and I can tell you that the stuff wears well.

    hugs to you all 🙂

  • Oh, poor Jensen. I’m so sorry that he (and all of you) have to deal with this. But thank God that it’s treatable and that there’s hope for relief!

  • Dee Dee,

    I’m sorry you have to go through this. But at least the light at the end of the tunnel is not a train!

    I don’t have any answers for you but will pray for you and your little guy. All my children were picky eaters as children so I can sympathize with you.

    I’m thankful for the Internet. . .you have such a wealth of information and support at your fingertips! And can connect to others who are dealing with the same thing your family is.

    Take care and just take one day at a time.

  • Poor little guy – but I’m so glad you have a diagnosis!

    Here’s a site that might help you get started on recipes:

    http://ourgaggleofgirls.com/recipes/

    Rachel is a homeschooling mom of 3 girls, and they have a lot of food allergies amongst the whole family. The recipes she puts up are all things that they themselves have cooked, and not only do they like them, but non-allergic people as well.

    I hope that helps you get started, and hope that you can quickly get Jensen’s problem under control so he can feel better and you can ALL relax!

  • Parenting is hard enough without itchy scratchy owies ALL.THE.TIME. and complicated diet needs. Praying for the grace and strength to take care of your little guy. You are a resourseful mom – just like Mrs. Ingels. So, I’ve no doubt you’ll make it through this challenge with no trouble!

  • hannaandersson.com has wonderful 100% cotton clothing for all ages. They are a little pricey but they have good sales and the quality is unbelievable. I think they also use organic cotton, at least in their pajamas. Praying for Jensen to feel better soon!

  • So sorry your little guy is SO misreable! I pray that everyone gets some relief and rest soon! I visit a site quite often – wanted to pass the link on because in the cookbook there are many posts for several allergy-related recipes – it will say gluten free, wheat free etc;. The site is – Titus2.com – go to the bottom of the left side bar and click on the cookbook – then if you register you can search by topic – like you could type in what his allergies are and it will give you all related recipes…but if you don’t want to register (just a name and email is all that is required) – you can still look through the recipes.

  • I think we should picket for a Trader Joe’s it is unfair that wherever I travel they have one, but NO WHERE near here. HUMP.

    I am so sorry to hear about your struggles, I guess his picky eating is a blessing.

    A Christian holistic Dr. How cool is that, what city?

    (((hugs))

  • Oh DeeDee,

    yay that you at least got some answers and a plan! the worst part is when something is wrong and everyone tells you they are “just fine”. My recommendation is to start with http://www.glutenfree.com, and also http://www.foodallergy.org/about.html while some of the stuff on this site may not apply to Jensen some of it might. AT least it links to recipes and I think both sites have message boards so you can talk to other parents who can relate. 🙂 Good luck!
    Jenna

  • I completely understand your intense transitions you must be going through.. I will try to help. Because of a heredity problem, myself, and three of my children must be dairy, egg, AND gluten free, not to mention peanuts and almonds. We must also be careful of how much soy and citrus fruit we eat.
    Now, after saying all that, I must say I am in a huge hurry to get out the door this morning and hopefully I will remember to get back to your inquiry. In the meantime, check out the blog called glutenfreegirl.blogspot.com Her recipes are not the average boring gluten free recipes. Very creative.
    I am also very surprised your holistic doctor didn’t mention staying off ALL sugar for at least six weeks. If the problem is related to yeast, especially Candida, sugar is a huge problem. It feeds off sugars and fungi type foods (mushrooms).
    Anyway, I’m sorry I don’t have more time this morning..I’ll be back.
    Many Blessings,
    Holly@aiminghigh

  • Praise God for some answers!
    I’ve heard that the Amazon Grocery store (really!) carries a good bit of ‘specialty’ foods for these types of issues.
    Best of luck – y’all have my prayers!

  • You will need a heavy-duty stand mixer and a bread machine. And a lot of pantry room and rubbermaid containers to store the different flours. It’s an adjustment, but like anything else, you get used to it and it’s definitely worth it! And just think how much better Jenson will feel! We’ll be praying for you!

  • I’m sorry I don’t have any useful websites to give you, but I will keep you all in my prayers!

  • Oh, Dee Dee…do I feel and know your pain. Our son, now 8, has struggled with severe atopic dermatitis since the age of four months. After 3 years of doctors, drugs and no results, we ended up at National Jewish Medical Center in Denver, CO. They are miracle workers when it comes to atopic derm and allergies.

    The key…water. They taught us how to super hydrate Jackson’s skin to help it heal and calm the itching. Jackson takes a 20 minute bath in plain water…put nothing in it. Then, he gets out, pats dry, applies lotion (whatever your doc recommends – we use Vanicream, which has no preservatives, scents, etc), and then puts a layer of wet clothes. (We use footie pjs or long underwear). We wet socks and put those on his hands and feet. Then, we put no a layer of dry clothes over that. He spends 2 hours in that or he sleeps in it over night. It is called the soak and seal method and it works miracles.

    This doesn’t cure the atopic derm, but it gives them some relief and allows the skin to heal. Jackson is now 8 and he does this now by himself. In fact, last night he came in and told us he was going to get his wet clothes on because he was so itchy.

    The first time we did this, at age 3, in the hospital, was the first night he slept all night. Praise God!

    National Jewish does sometimes use low level steriod cremes, if the skin is highly inflammed and/or infected. But, you don’t have to…plain lotion works almost as well.

    In times of high inflammation, National Jewish taught us to use the soak n seal method three times per day – morning bath, afternoon bath, and then at night.

    If you have any questions about it, just let me know. I’ll be happy to help. This has been a Godsend to us.

  • Good for you for pursuing a holistic approach. And what a great blessing to find that doctor! I know how your mama heart must hurt to know your little guy is in pain.

    Off the top of my head, here’s a few sites for you to check out.
    candidasupport.org – I have chronic yeast and I used it to successfully treat. I’m pregnant now and can’t take it, but it’s safe for babies and kids. We used it to treat thrush in my last baby. I wouldn’t say that all of their supplements are necessary, but just the three-lac alone, once a day, has been life altering. Highly recommend. (Their site can be a bit over the top, but it also has good info. Take it all with a grain of salt.)

    Look into a buying co-op, such as United Buying Co-op to get organic products. Or, I live close to a Whole Foods and would be happy to ship you what you need. It’s frustrating not to have access to stuff that would make your life so much easier. Just let me know.

    I will keep thinking and post more if they come to mind.

    Hugs.

  • Is that what was causing his screaming? Poor little tyke. We have our kids on the Elimination Diet at the moment, and have recognised certain things in our kids already. We’ve switched to soy milk and products, dropped all processed food, colours, additives and preservaties. We make our own bread, but we are still thinking we will drop gluten as well. We’re desperately holding onto wheat, but I bet that’ll go soon too. We are seeing such encouraging results, (one of my children has ASD, and another two have Expressive-receptive disorder) and I pray you will also.

  • It looks like you are getting a lot of physical help, so I’d like to give you some spiritual help 🙂 !

    Take several of these many, many times each day until Jesus returns!!

    Seriously, these are the very best medicine!!
    Luke 4 :18; James5:14-16: 1 Thess. 5: 23-24; 3 John 2; Proverbs 4:20-24; Rom. 10:17; Ps. 107:20; mark 11: 22-24; Mark 6:5-6; Matt 18:18-19; Matt. 21:21; John 15:7; 1 John 5:14-15; Heb. 4:14-16; Phil. 4:6-7.

    And my personal favorite for fighting the fight: 2 Cor. 10:3-5.

    I am praying for little Jensen, and his mama! These verses will be the bedrock of those prayers!!

  • Oh, yes, we have, as you know, SO BEEN THERE!!!! THere is an awesome cookbook called Allergy Cooking with Ease which is what I used to get me started (until I figured out all the different flours and what worked and what didn’t. ) It has some duds but for the most part some great recipes. Amazon.com has some good prices on organic preservative free foods (we by lollipops there because it is the only place I can find ones without corn, citrus, apple, and dyes.) Also, look into Envirokids cereals and granola bars (Amazon.com carries them), Dr. Praeger’s frozen foods (fish sticks, french fries, chicken nuggets, you name it), also, Panda Bites licorice makes for a good treat (and are incredible). Email me if you want more info and more ideas–I have way too many for here. Those are a good place to start though.

  • What? He lives in FL, and no citrus foods allowed??? haha
    Actually, I was going to say that my college roommate has 4 sons all with celiac disease, and she makes her own bread with rice flour (and probably other flours they are allowed to eat), and she uses this breadmaker:

    http://www.amazon.com/Zojirushi-BBCCX20-Bakery-Supreme-Machine/dp/B0000T6J3I/ref=pd_bbs_sr_1?ie=UTF8&s=home-garden&qid=1210779388&sr=8-1

    It is more expensive, but works well with flours other than wheat, and so people often buy these when they have to make bread with other flours. Hope that helps. I know she says that once you adjust to cooking for that diet, it doesn’t seem hard; it becomes almost routine. The difference between her 4th son before they diagnosed him and after was like night and day. It was the same thing where they told them that their son was feeling miserable all the time and this explained his behavior. As it turned out, her other three sons had it too, it just hadn’t shown up so obviously as it did with her 4th son.

    Crista

  • ohhhh! I am so sorry you are dealing with those issues! My son had severe allergies as a baby. It is a long story, but God healed him eventually!

    In the meantime however, I had to look long and hard at his diet and health. I have two books to recommend to you that I think would be helpful and that you would enjoy, considering you are open to holistic and healthy living! The first is SuperImmunity for Kids, By Leo Galland, M.D.

    This book helped me TREMENDOUSLY while struggling with my sons allergies and consequent full body excema.

    The second book I would like to recommend to you is a cookbook written by some Amish women in Ontario (I think they are Amish. It is called Creative Choices, Adaptable Ideas for the Allergy Diet. You have to contact them directly to receive it.
    The one I spoke with was Mrs. Grace Brubacher. Her number is (519) 846-9217. If that number doesn’t work shoot me an email and I will send you the others and the addresses.

    It was the most comprehensive cookbook I have every read, including substitutes for just about everything under the sun! WOW.

    I hope that helps! I’d like to add though, don’t lose hope or despair when God hasn’t healed yet. It took a while for my son to be healed. =)

  • I am so sorry for your son and your family. I’m not familiar with allergy diets, but I saw a comment that suggested you check the ingredients of vitamins. Wanted to let you know my cousin, whose children have allergies, is a big fan of Juice Plus instead of vitamins. And don’t forget that you can find lots of foods online. My son is a feeding patient, who won’t eat most wet and soft textures. We found dried fruits & veggies without any additives at http://www.justtomatoes.com. And my mom is in a small town. She buys some foods from Amazon.com if they stop carrying her favorite items at the local grocery stores. Good luck!

  • My oldest son had severe excema when he was a baby, bad enough that creams for “sensative skin” bothered him. We used a lot of Aquaphor ointment on him to calm his skin. It’s kind of Vaseline-y, but it helped. Also, a lot of Burt’s Bees products (lotions, soaps, etc) are gluten-free.

  • Oh DeeDee! So sorry.

    Acidophilus is also good for fighting Candida. Friend of mine cleared up her son’s excema with the Flaxseed oil, omega 3 and 6 oils. Just adding it to his diet helped. Label reading is going to be key – stuff sneaks in the weirdest places.

    Good luck!

  • DeeDee, I had a feeling something wasn’t right when you were not posting much lately. No matter what pain our kids are in, we hurt right along with them. I have no great advice to offer, but I will be praying for Jensen and all of you.
    Big Hugs!

  • Hi – I just stumbled across your site, and I’m sorry to hear about the diagnosis.

    A site that has helped me (my little guy has a severe dairy protein allergy, which he will, hopefully, outgrow someday), is http://allrecipes.com.

    It allows you to do very specific searches for recipes that include certain items, or recipes that don’t include various allergens.

    You can share and comment on recipes there, too.

    Hope that helps you some in your search for food.

    Specifically for dairy free information (ways that dairy proteins are listed in various ingredient lists), I use http://www.godairyfree.org.

    And I know one person, at least, commented on watching for various ingredients in shampoos and such. For us, we have to watch as a lot of the “natural” moisturizing soaps have various forms of milk in them.

    Good luck!

  • Oh my friend what you are describing was my life 7 years ago. My son suffered so terribly and it was so awful to watch him hurting every day. He is now eight and although he still has some issues it is definitely manageable now.

    There is hope.

    Due to food allergies, my son is gluten, dairy, egg, fish, nuts and soy free and has been since he was very small. Narrowing down and eliminating his allergens helped tremendously with his skin condition.

    I know it sounds scary and you wonder what the heck you are going to feed him but I’m here to tell you it isn’t as hard as you might think.

    I also live in a very isolated community with no health food stores to speak of although I can now get the occasional thing at my local grocery store.

    I’d be more than happy to help you.

    The suggestion you received above about the wet soaking is such a great one and I hope you try it. There is such a misconception out there that baths are off limits for these poor kids, it’s just not true.

    A great place to start is with this support group, they literally saved my life:

    http://www.kidswithfoodallergies.org/

    My son also suffers from food aversion with severe anxiety. This allergy cookbook is the only one I’ve found that offers simple recipes that kids love. It’s called Special Foods for Special Kids. Here is the link:

    http://www.amazon.com/Special-Foods-Kids-Practical-Solutions/dp/1885003382/ref=sr_1_1?ie=UTF8&s=books&qid=1210788984&sr=8-1

    Please, please do NOT hesitate to email me if you have any questions. I know how daunting it is for you right now but it can be done you just have to get over the learning hump first.

    Hang in there!

  • Well, it IS all very overwhelming. DH and I have battled candida and weird allergy symptoms for two years now. HATE IT. Can’t seem to get rid of it, for whatever reason. So anyway.

    We have made friends with meat beans veggies and rice. Bob’s Red Mill has lots of alternative grains (try millet, quinoa, amaranth; also gluten free oats and polenta – very kid friendly) you can buy online.

    I’ve got a series going at my blog now on getting kids to eat veggies. Because I’m telling you, we now have to eat A Lot Of Veggies.

    I recommend Silk Soy Milk as dairy substitute. Best tasting, IMHO. If he doesn’t like the plain, start with vanilla work backwards.

    I feel your pain, sister, I feel your pain.

  • I second the recommendation of Hanna Andersson – If you’re near one, try the outlet, or buy on sale. The stuff is great, 100% cotton and lasts forever.

    I would also recommend the Soy Silk SoyMilk – and the “Soy Baby” yoghurt (by the makers of “Yo! Baby” organic yoghurt.

    There are a lot of gluten-free options in your local grocery store – check out the various Red Mill flours – they have some great stuff.

    Good luck, and I’m glad you know what you’re dealing with now!

  • You all cannot know what all of your comments mean to me! I’ve had my nose in the computer every free moment, and am finding a wealth of knowledge!

    Thank you!!!!

  • Praying for Jensen and for you. My first had severe asthma and life was a rollercoaster of doctor visits, hospital stays, allergy shots, etc. He’s 26 now and no more asthma. But I still remember what it’s like.

    In Him,
    Teresa

  • Ditto hanna anderson for clothes, also try:

    http://naturalbaby.stores.yahoo.net . And easy peasy for rice flour and a surprising amount of organic, whole food – – Amazon. You just may have to buy some things in bulk quantities. Get Amazon Prime – shipping is free – woohoo!

    I am sorry for you and poor little Jensen – but I think he is in very good hands!! : )

    Congrats on finding a good doctor; sounds like you’re about to turn a corner!

  • You might look through the Dharma Trading company site (dharmatrading.com). They sell clothing and natural dyes for all types of projects. Their clothing is mostly white cotton “blanks”, meaning plain, white, cotton pieces. It’s a bit boring, but could help for basic pieces. Their prices are not too bad either.

  • Hi. I’m so sorry to hear all that you and Jensen have been going through. My son also has severe food allergies – wheat, milk, eggs, nuts, honey, and all citrus fruits. He was also a very picky eater but it has gotten so much better since we have changed his diet – he is more willing to try foods and eats a much larger variety than he once did. There is a theory out there that these kids are picky eaters because they intuitively know that what they are eating is hurting their bodies so they restrict their diets.

    That being said – mine only drinks apple juice and water. We grill almost every night – chicken, pork chops, hamburgers, etc. – it’s the best way to get protein. We use sunflower butter instead of peanut butter – very healthy and tastes good. A treat is that most chips are fine – Lays, Ruffles, Fritos – each only have a few ingredients and they are safe. We use rice cereal for breakfast (instead of oatmeal) and mix in pureed fruit (no citrus) and I swear he just thinks it’s oatmeal. There are some good breads you can find at whole foods stores online. And, of course, rice is a great side dish to any meal. Chick Fil A is a great place to get fast food. Get the grilled chicken without the bun and the fries are also safe – they have nutrition information on their website.

    We use Juice Plus for nutrition – not the reds (citrus), but the greens and the purples are great, complete whole food nutrition.

    Best of luck to you – it isn’t easy but will be well worth it.

  • hello…..
    my son had a rashes since he was a baby, but now it’s under control (he just turned 5).

    is jensen seeing a chiropractor? ours has worked wonders for us. he also recommended a probiotic (we use garden of life’s primal defense for kids) and a daily teaspoon of flaxseed oil.

    if you’re looking for natural creams, we use earth mama angel baby brands, specifically the angel baby lotion for maintenance and angel baby bottom balm (made for diaper rash, but great for any rash) when he has a breakout. check out the ingredients. the cheapest place i found it is on http://www.mothernature.com.

    as far as dairy, we acutally drink raw milk, which normally is fine for people even allergic to regular dairy. not sure if you can get it in your area, though. the farm we buy it from also sells raw cheese and we make our own kefir with the milk to put in our smoothies.

    congrats for trying to go the natural route. it can often take longer and be a little more of a hassle at first, but well worth it in the end!

  • Oh my gosh, I could write a book full of advice for you.

    Your doctor is soooo smart to try to take him off those foods. Especially the gluten. Celiac disease and non-celiac gluten intolerance can cause hundreds of symptoms. So everyone who has a problem with gluten will get a different reaction.

    There is a specific rash that goes along with celiac disease called dermatitis herpetiformis. Some people with gluten problems have this and some get other types of skin reactions.

    I think the best place to send you is http://www.glutenfreeforum.com/ . There are so many helpful people on there. They will be able to give you a lot of advice and recommendations on good GF products.

    My kids and I have been gluten-free for over two years. My daughter had stomach problems and behavior problems. My son had a complete personality shift. It was only when we put him GF and he changed so much that we realized how autistic his behavior actually was.

    In fact right now, I’m baking 30 some-odd yummy gluten-free angelfood cupcakes (from a mix) for my daughter’s birthday party at school.

    I had a blog last year that I’m going to restart on another platform. http://nancysplace.wordpress.com/

    Take a look at “living the gluten-free life” and “necessity is the mother of…” for my posts on gluten-free.

    Definitely check out Gluten-Free Forum.

    Hope your little one feels better soon. Feel free to email me anytime.

    Nancy

  • Bless his heart. 🙁 I wish I had words of wisdom/advice for you, but I don’t know about this illness.

    I WILL, however, be praying for you all; and I look forward to learning right along with you.

  • I don’t have any resources for you, but I know there is a ton out there since it seems like gluten free diets are helping out people with a whole host of problems.

    I will say as I glanced over comments I saw that a lot of people mentioned clothing sites that they said were expensive. You should try Ebay. I know a friend of mine buys tons of Hanna Andersen stuff off there because it so expensive regularly.

  • Oh, DeeDee, I am so sorry. I know your momma’s heart must ache. I pray that God will use this new doctor and diet and cotton to ease Jensen’s suffering and make life better for all of you!!

  • On the lookout- I’ll get back to you.

  • No advice. But my heart is full of sympathy for Jensen. I have excema that flares up on my feet occasionally. Before it was diagnosed, I hit that scratch-until-I-bleed stage. It was absolutely miserable. Poor little guy.

  • DeeDee, what a heartbreaking struggle for you. Praying for you, my friend.

  • I think you are on the right track, we will pray for you all! I have a niece who has cured herself of all Chron’s disease symptoms on the SC Diet and has a website.

    http://nomorecrohns.com/default.aspx

    A lot of people with leaky gut and autism use this same diet and this site is loaded with excellent and tasty recipes. Also a lot of encouragement!

  • I’m not certain, but I think Rice Krispies and Corn Flakes might be wheat-free and gluten-free. It seems obvious to me now, but it wasn’t at first. You can also find bags of rice puff cereal, but it can be a bit bland and bouncy. Wheat hides in everything!!! I have lots of wheat-free recipes on my site, including a homemade (easy) taco seasoning mix. The store-bought packages have wheat. Of course. Because the food companies are out to ruin our lives. 🙂

  • Oh I feel for you. Good on you for doing what you are doing – researching and keeping your mind open. Despite what the medical profession would have us all believe, each of us responds a little differently. I hope you can find his triggers quickly and make him all better just like you want to.

  • I’m sorry about your little guy yet so happy you are finding answers. Two of our children and I eat gluten free (celiac disease), and another can’t have dairy. I love The Gluten Free Gourmet by Bette Hagman. It has wonderful recipes for everything, including a basic rice flour mixture we use for everything. We mix it equally with garbanzo/fava flour (Bob’s Red Mill) for a nice texture in baked goods. Check out Bob’s site http://www.bobsredmill.com/recipe/
    for wonderful products and recipes. Their Gluten Free All Purpose Baking Flour is nice and if you can order it, might be good to start with.

    Blessings to you and thanks for blessing me many times over with your blog.

  • Oh, that poor little baby. That just sounds awful. I’m so glad that you’ve got a diagnosis and a treatment plan. I don’t have any advice for you, but I just wanted to say good luck. I hope you find everything you need.

  • Hugs, DeeDee,

    That’s a lot to deal with! I’ll point you to two spots that have vegetarian, gluten-free recipes, etc. While you may not be looking for vegetarian, per-se, they will have some dairy-free information, so maybe it will help.

    First is at mcdougall.com. If you click on discussion boards, you can scroll down to one called “gluten free issues.” Not sure if this will work, but here’s a link: http://www.drmcdougall.com/forums/viewforum.php?f=16&sid=b655ade1807223a103a4e00598b7d550

    The second is at glutenfreeforum.com which is a board for people with celiac disease. Even though that is not your son’s diagnosis, these people are experts at avoiding wheat/gluten, and many can’t eat dairy products either.

    I hope you can get on the path to healing for your little guy!!!

  • Hanna Andersson sells wonderful 100% organic cotton kids pjs and clothes. They are pricey but so soft and cuddley. Praying for comfort and healing for your little guy.

  • Hi DeeDee! While I don’t have any experience with this, I have read a great book that deals with the kind of diet Jensen needs. It’s actually about autism, but would suit your needs well. It’s called “Unraveling the Mystery of Autism and Pervasive Developmental Disorder” by Karen Seroussi. You can find it at Amazon.

  • Hi, I don’t have any suggestions, but I want you to know that I’ll start praying. And I’m very glad that you see some light. A hopeful feeling! 🙂

  • I just found another blog that might help some:

    http://www.crockpot365.blogspot.com/

    It’s all crock-pot recipes, but many of them are gluten-free. (Not the other stuff, though. But at least with a good ingredient list, it’s not hard to strike off any non-usable recipes.) They look really yummy to me, and I don’t even have food issues! (Well, other than eating too much!)

  • Sorry, I didn’t have time to read all the other comments, so maybe someone has already suggested these things, but here goes…

    I would suggest not using fabric softener in ANY of your laundry. This includes yours and Fiddledaddy’s. I do not use softener, and have not since I started cloth diapering over two years ago. My dh is pretty picky about his clothes (how they feel) and he LOVES the no softener thing. Softeners will build up in your dryer and I suppose could leave residues in your washer as well. Okay, so maybe you already do this… it just sounded to me like you washed J’s clothes differently than your own…

    Also, as for clothing, socks, and blankets, have you thought of using other natural fibers such as hemp or bamboo? If you google it you should be able to find many places that these types of clothing are available. Bamboo in particular has natural antibacterial/antimicrobial properties.

    Praying for you and yours,

    ~kjl

  • Oh, I feel for you, and will pray for Jensen. We went through an awful year when my middle child was 1yr old and was allergic to dairy and gluten. It was tough, but we found things at Publix, (I know you are in Florida like we are) and if you have one near you, Native Sun. Thankfully, my son was healed and we went back to our regular diet. Although now that we are moving into a city with Trader Joes and Whole Foods, I may add more organic and gluten free items since I think it may help my sons behavior to get off the white flour and sugar.
    Be Blessed!!

  • I’ve been skimming over the comments. You’ve gotten some great hints and advice. One more thing that has really helped me in the adjustments is to focus on what CAN be eaten rather than what CAN’T…and prayer. I know you, as well as I, believe in a God that loves us and has promised to provide for us…this includes food. When I would get overwhelmed looking at all the “can’ts” on a label and would feel like bursting into tears at the grocery store, I would remind myself that God knows WHERE I am, WHAT my family needs for nutrition, and WHERE to find it. HE WILL PROVIDE. And, in the process, open up a world of creativity in your food menus. I find it very exciting now watching what God can and does provide and then reinventing the menu for the day/week/month. There IS tons of options out there in the non-gluten, non-egg, non-diary, non-soy, non-nut. We just need to think outside the box…literally.
    I order a lot of my grains and foods from http://www.azurestandard.com. I’m not sure if they mail to your side of the nation, but you can check. There is also a site called AllergyGrocer, I think, on your side of the nation that might help. They’re kinda expensive, though. I only order from them at Christmas time for some allergy safe candy and chocolate chips.
    Feel free to contact me with any specific questions or even just to pray with you and for you.
    Many Blessings,
    Holly

  • Found a blog for you that lists so many allergy blogs and sources. Overwhelming, but could be helpful for you…take it slow. http://gingerlemongirl.blogspot.com/2008/05/why-i-write-this-blog.html

  • Don’t know if someone listed this or not, but I follow the following blog, which–if nothing else–has made the whole You’re The Freak With The Allergies Experience a lot more normal:

    http://allergymoms.com

  • Also, Pamela’s Baking Mix can be found nearly everywhere these days, and it is a good all-purpose (allergen free) flour.

  • Hi Dee Dee…my 2.5 yr. old was also diagnosed w/food allergies a few months ago – dairy, eggs, chocolate and oats. And we are going gluten-free. All manifests as eczema and it got even worse w/the seasonal allergies – hives all over her body. I don’t know if you had Jensen tested for seasonal allergies but it is her biggest allergen and is tied to the leaky gut. If he is then also check out allergysolutions.com. Your holistic provider may be aware of it although it is new. I am also looking into acupuncture and testing for infections in her gut. No h-pylori and next month is parasites. I was getting a handle on the food allergens but having to stay indoors due to the seasonals is depressing! Hope he is doing better!

    BTW, Pamela’s baking mix may have buttermilk in it. At least the pancake mix does. We can’t use it

    Would love to hear about what you are learning. We are also using a Christian holistic practioner as well as traditional allergist who is very open to eastern medicine.

    Pam