New To The Board And Oh, So Confused

[bnsnewman]

Hi, I'm so confused that I don't even know where to start. My nearly 6 year old daughter has been complaining of terrible stomach pains that have been very sporadic for months now. After the pediatrician ordered labs and tested for celiac, one of the markers came back positive. The ped said that in order for it to be considered a positive diagnosis, they like to see two markers positive (sorry, I don't remember which one it was right now). She then referred us to a ped GI doc. It took us one month to get an appointment and when we went in I gave him the blood test results and he disregarded them. He said that since there was only one marker, he doesn't consider it positive. He said he wanted to try my daughter on Prevacid for one month to see if it improved her symptoms. After a few weeks with no impovement, he said to discontinue it.

In the meantime, I ordered a test kit from Enterolab and these were her results:

Fecal Antigliadin IgA 21 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 17 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 17 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0503

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)

Interpretation Of HLA-DQ Testing: Although you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having two copies of a gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe."

When we went back one month later to the ped GI for a follow up, I took him the results of the Enterolab testing. He told me that the test and the results were considered psuedo-science and on the cutting edge of the medical community. He then told me to give her more fiber. Needless to say, I left there without making a follow up appointment with him.

A little more on my daughter, when she was 1 year old, she was diagnosed with Benign Congenital Hypotonia, which is low muscle tone. She had a couple of years of physical therapy to help with this. She always seems to be exhausted, and looks it too. She gets sick very easily and tends to run low grade fevers when sick, and misses at least one day of school a week due to either not feeling well, actually being sick or being too tired to get up (she does not go to bed late). She still has sporadic stomach pains, and occasionally has a bout of diarrhea.

I've decided to take matters into my own hands and go for a gluten and casein free diet. It breaks my heart to see my daughter looking so unwell. I need to restore her health, because I feel if I don't, she is going to become sicker and sicker.

It seems overwhelming enough to go gluten free (we have two other children), but to go casein free as well is making me feel like I'm lost in a giant sea. Does anyone have any BTDT advice or helpful hints or suggestions for me? Thanks for letting me ramble and for listening.

Natalie

[Pacer]

Natalie -

I hope that you are on track to making life healthy and wonderful for your sweet daughter. I cannot say I have BTDT , I am new here too and struggling. If you click on my profile and read my recent posts you will see the rantings oops I mean words of a desperate, distraught , extremely overwhelmed person.

I consider myself an extremely proactive person. I would do exactly the same thing as you. Do what you have to do to get your kid feeling good, straightening out the technicalities of a diagnosis can come later. Last I checked, insurance didn't pay for $6 boxes of lame pasta anyway. It can't hurt to try the diet.

I am no MD -- but all of the symptoms you describe in your daughter could easily be celiac. Of course, it could be something else. Celiac is not my son's only problem either. He has another genetic potentially life threatening chronic problem, which was flagarantly misdiagnosed for 6 years by a revered department head at Columbia U Hospital -- which just happens to be the home of Saint Peter Green, another MD who dismisses Enterolab as pseudoscience. (did you follow that? Short version: trust your instinct).

Did that help at all? Just wanted you to know you're not alone. HEIDI

PS. Enterolab also suggested we go casein free, (109 units) but I just.can't.do it right now. We are vegetarians - casein free is too much for us all at once.

[bnsnewman]

Heidi! A real live person! Thank you so much for responding to me. I feel so desperate and confused and lost. I bought 4 books on a gluten free life style last week and am going to be trying some holistic remedies as well.

Why is it that doctors seem to be so threatened by Enterolab? It's almost as if they get mad that they didn't come up with the test. When you take matters into your own hands, they just don't seem to like it.

I'm sorry to hear about the mis-diagnosis with your son. I can understand your frustration, to say the least.

I'm going crazy trying to omit everything at once, and feeling like I'm contributing to my daughter not feeling well when I prepare a meal that is not gluten or casein free. I tend to have the attitude of "I want it all fixed, NOW" and that is not very helpful right now. Thank you so much for letting me know that I am not alone. Natalie

Natalie -

I hope that you are on track to making life healthy and wonderful for your sweet daughter. I cannot say I have BTDT , I am new here too and struggling. If you click on my profile and read my recent posts you will see the rantings oops I mean words of a desperate, distraught , extremely overwhelmed person.

I consider myself an extremely proactive person. I would do exactly the same thing as you. Do what you have to do to get your kid feeling good, straightening out the technicalities of a diagnosis can come later. Last I checked, insurance didn't pay for $6 boxes of lame pasta anyway. It can't hurt to try the diet.

I am no MD -- but all of the symptoms you describe in your daughter could easily be celiac. Of course, it could be something else. Celiac is not my son's only problem either. He has another genetic potentially life threatening chronic problem, which was flagarantly misdiagnosed for 6 years by a revered department head at Columbia U Hospital -- which just happens to be the home of Saint Peter Green, another MD who dismisses Enterolab as pseudoscience. (did you follow that? Short version: trust your instinct).

Did that help at all? Just wanted you to know you're not alone. HEIDI

PS. Enterolab also suggested we go casein free, (109 units) but I just.can't.do it right now. We are vegetarians - casein free is too much for us all at once.

[VydorScope]

Try the gluten-free/CF diet for 30 days. If you see a turn around, then you have all the answer you could ever need. When you find a new doc, tell him about how your daughter reacted to the diet and you will likely get a much better response then the Entorlab.

BUT if you are going to try this, you have to go ALL THE WAY. No exceptions, no cheating, ever. ANYTHING that touches her, or her food MUST be 100% gluten-free. That includes YOUR lotions, makeup, shampoo, etc. Everything. No exceptions. If she has celiac disease (as her Entrolab states), you should see some positive change soon. And the good news is, as long as you stick to the diet she will live a long healthy life. If you dont, she will face a life of pain and sickness, and likely an early death. Its to serious to let one doctor deter you. Hate to sound so glommy, but I feel you really need to know this.

Go gluten-free and you will never need look back. Better days will be ahead!

[happygirl]

Unfortunately, the medical community just doesn't know enough about celiac, non-celiac gluten sensitivity, etc, etc etc. You will find a variety of people on this board: some are diagnosed through biopsy, some have unclear test results, some never have any testing....the common theme is that they are on/trying the gluten free diet. Although it isn't the answer for everyone, for those that it is, it is a blessing to us, because it gave us our life back. Unfortunately, yur story is one that we hear often on the board...little to no help from the doctors, so you take it into your own hands.

Bottom line is: if you child improves on the gluten free diet, then keep her on t. Don't be bullied by a doctor who tries to tell you it isn't Celiac. They could be right---it might not be "true" Celiac, but who cares? If it helps your daughter, then you don't need a doctor tell you if you can or cannot feed your daughter gluten.

Vydorscope is right: gluten free is gluten free, not gluten lite. Cheating negates the progress you have made previously. If those on the board ate gluten "lite", they would be horribly sick. We've all been where you are, and we truly do understand that it is overwhelming. You are lucky to have found this site---it truly is the BEST resource out there. Let us know what we can do to help, ok?!!

Best of luck,

Laura

[ArtGirl]

Natalie,

You've had some good responses.

I am casein free - for life. For me, this is not just a temporary lactose intolerance because of villi atrophe. So I have been finding creative ways find alternatives. Milk substitutes, such as Almond milk, taste great and aren't difficult to switch over to. If your daughter can tolerate soy, there are some soy-based substitutes.

Puddings made with coconut milk or almond milk are really good, especially chocolate.

The most difficult for me to replace is cheese and ice cream. I have found some recipes for reasonably good cashew cheese, and have a cookbook for cashew "ice cream" which I haven't yet tried because of not having an ice cream freezer - but plan to this summer. I do make shakes and smoothies in the blender using frozen fruit and either coconut milk or almond milk. And gluten-free pizza with cashew cheese is pretty good.

The easiest way to avoid casein is to fix foods that don't have any dairy in them, naturally. There are other snack foods besides cheese. Peanut and butter sandwiches with gluten-free bread are always a winner.

Hang in there. It will get much easier for you as you gain some experience.

Hope your daughter gets well very soon.

[Fiddle-Faddle]

Hi, Natalie, welcome!

I cried for two days when I figured out (no help from the doctors, of course) that I had to eliminate gluten. But it actually was so much easier than I'd expected!

You can replace storebought bread with home-made, if you have the time to bake (it takes a lot less time than I'd thought it would)--and kids LOVE to help with that. Or if there is a Whole Paycheck I mean Whole Foods near you, you can buy their white sandwich bread, it's really not bad, but homemade tastes as good as any gluteny bread that I remember. And pastas are easy to swap, and not too expensive if you go to an Asian market and buy their rice noodles. Asian markets are great places to buy rice flour, potato starch, and tapioca starch, too.

You might try going gluten-free first and after you get the hang of it, THEN eliminating casein. There's a great book that might be very helpful--Special Diets for Special Kids by Linda Lewis.

Lots of recipes, tips, and pointers.

BTW, what is BTDT?

[Guest lorlyn]

Hi Natalie,

Just wanted to say hi and welcome to the board. My family And I have been on the diet for 6 months now and my 10 year old daughter is having almost no more pain. It is nice seeing her happy(almost considering the diet change) and healthy almost back to perfect. We still have problems when she gets to hot. Just hang in there and keep reading every thing you can on here and you will learn alot real quick.

[bnsnewman]

Fiddle-Faddle, BTDT means Been There Done That

Thank you all so much for your responses, it truly did bring tears to my eyes. And yes, the crying...what can I say, you all seem to know how I feel. I'm getting such fantastic pieces of advice from you guys, again, thank you. It means so much to me, especially coming off of my dismissal from the doctor. And the sense of humor goes so far too; I burst out laughing at the Whole Paycheck comment! It is so true!

I just ordered a bunch of gluten free products, things like flours, cookie and cake mixes. I do have a bread machine that we have used for years, but I am going to go out and buy a dedicated gluten-free bread machine and start making my own.

If a person has a gluten sensitivity, does that mean that they can't use certain lotions, etc.? Yikes, so much to learn. Natalie

[VydorScope]

Natalie, As for you question about lotions, I guess you missed my reply several posts back, so here is ..

(the short answer, is yes. gluten-free Everything)

Try the gluten-free/CF diet for 30 days. If you see a turn around, then you have all the answer you could ever need. When you find a new doc, tell him about how your daughter reacted to the diet and you will likely get a much better response then the Entorlab.

BUT if you are going to try this, you have to go ALL THE WAY. No exceptions, no cheating, ever. ANYTHING that touches her, or her food MUST be 100% gluten-free. That includes YOUR lotions, makeup, shampoo, etc. Everything. No exceptions. If she has celiac disease (as her Entrolab states), you should see some positive change soon. And the good news is, as long as you stick to the diet she will live a long healthy life. If you dont, she will face a life of pain and sickness, and likely an early death. Its to serious to let one doctor deter you. Hate to sound so glommy, but I feel you really need to know this.

Go gluten-free and you will never need look back. Better days will be ahead!

[Fiddle-Faddle]

Natalie, unless you find a machine that has a specific gluten-free cycle (I remember reading that there really IS one, I just can't remember which), it's actually easier to bake the bread in the oven, and it turns out better in the oven, too. At least, that's what all my gluten-free baking books say...But maybe someone here has better luck with the bread machine?

[chrissy]

the bread machine with a gluten free cycle is zojurishi----or something like that!!LOL!! my dad makes pamela's bread in a regular bread machine.

[VydorScope]

Natalie, unless you find a machine that has a specific gluten-free cycle (I remember reading that there really IS one, I just can't remember which), it's actually easier to bake the bread in the oven, and it turns out better in the oven, too. At least, that's what all my gluten-free baking books say...But maybe someone here has better luck with the bread machine?

I disagree, my Oster Express Bake was around $50, bought at target and has made every single gluten-free bread both mixes and "from sctrach" with out issue. I just run it on its "normal" cycle, and "medium" for the crust. It has never failed me. I know the conventional wisdom on this board is against me on this, but it is the truth.

[bnsnewman]

Thanks again to everyone for their helpful answers. I'm still confused beyond words and feeling extremely overwhelmed, but so glad I found this board! You are all so helpful and friendly.

Funny enough, we did get a Zojirushi bread maker over 10 years ago, but since we have baked non gluten-free goods in there, I won't use it for my daughter. I ordered some flours from Bob's Red Mill and bought some bread mixes at Whole Paycheck, er, Foods, and am going to make those in the oven. I bought a loaf of gluten-free bread and my daughter did not like it, so I am really hoping that she likes the ones that we make here.

[VydorScope]

MOST gluten-free bread sucks. The best one we have found so far is "Bread From Anna" which we order online and make in my Oster ExpressBake Bread Machine on the normal bread settings. Its the only one so far that my son has liked.

[Guest jokamo]

bnsnewman,

Hi and welcome to the board. It is very confusing and upsetting to go gluten free "cold turkey" but like someone else said, try the diet for at least 30 days and see how your little girl does. If she is improving, then that is your answer. As far as gluten free bread that you buy at the stores, I recommend staying away from them because they do suck! Fresh baked gluten free is always best and the bread that I make, my 2 girls eat before they eat the regular bread (and my hubby works for Sara Lee Bakery Group)!!!!!! Anyway, come back as often as you can and ask lots of questions, even if you think the question might be dumb. The only dumb question is the one tthat you didn't ask!!! You will find lots of info here and when you can't find what you are looking for, ask us and someone will be able to help you find the answer!

By the way, I cried for about 2 days when I went gluten-free, but it is sooooo worth it.

good lick

Jodi

[lonewolf]

Welcome to the board. You're making the right decision to go gluten-free/CF - I'm sure your little girl will benefit greatly.

Here are a few meal suggestions to make the transition easier:

Breakfasts:

gluten-free toaster waffles: Vans, Lifestream (Buckwheat Berry flavor!) and Trader Joe's all have great ones;

gluten-free French Toast - use Ener-G foods Light Tapioca bread, rice milk (Pacific brand or other gluten-free brand) and eggs with a splash of vanilla and a shake of cinnamon. She won't know the difference.

Scrambled eggs with bacon

Envirokidz cereals with rice milk (you might want to start with the vanilla flavored.

Lunches:

Turkey or PB&J sandwiches on brown rice tortillas (I get mine at Trader Joe's); chips and bean dip, hot dogs wrapped in warmed up corn tortillas

Dinners: Tacos, Spaghetti with Tinkyada pasta, meatloaf and mashed potatoes (use crispy rice cereal for the breadcrumbs and mash the potatoes with chicken broth), Roast chicken and baked potatoes or rice, hamburgers and hotdogs with baked beans (Ener-G Foods buns aren't too bad if microwaved and I've heard that Whole Paycheck has some good ones too), homemade chicken fingers with Tater Tots, any kind of soup she likes.

We all understand how hard it is at first, but you'll get the hang of it. I have 4 kids - 2 are gluten-free and one is also dairy-free. We eat totally gluten-free at home - even my hubby and 2 gluten eating kids. It just takes a while to get your rhythm, but you can do it.

[bnsnewman]

Jokamo and Lonewolf, thank you for being so welcoming. I feel like such a fool, but cried some more when I read how warm your responses were! All of you have been so fantastic, and I have never been on a message board that was this warm and encouraging. Thank you all again.

We are making progress in baby steps, and at this point, I will take what I can get! It seems like every day I am ordering some gluten-free products on line, and I found Envirokids cereal in our grocery store and bought 3 different flavors, as well as their crispy rice bars. I also found some rice chips, and surprisingly, she likes all of them! Yay!

My husband and I were talking and decided to clear most of the chips and crackers out of the pantry, and replace it with gluten-free foods. And the reason we decided to do this is we feel it might encourage our daughter to try the new foods, and give them another try if she doesn't like them the first time. I think it might be easier for her if she sees that the whole family is eating that way. And I've also realized that our oldest daughter has been complaining of stomach pains after she eats for a while now, so I believe going gluten-free will help all of us. Especially because both my husband and myself carry the gene for gluten sensitivity.

Our families have been wonderful, and Nana wants me to give her a list of safe foods and she is going to buy her own gluten-free snacks to keep at her house for when the kids come visit.

I'm not sure if it's because my daughter has had stomach pains for so long (now the stomach pains are accompanied by headaches, and that is fairly recent and worrisome. I've also noticed that she gets sick much sooner after consuming gluten than she used to) or what, but a big problem that I have is she sometimes just doesn't each much. And she is already thin to begin with. My hope is that in time, as she feels better, her appetite will improve.

And even though her test came back for a positive casein sensitivity, I decided to take the advice that some of you offered, and to go just gluten-free for now. Trying to do everything at once was so overwhelming.

The only other test or doctor appointment that we have coming up is allergy testing for gluten and casein. We are not going back to the GI quack, and I am not going to request a scope/biopsy. I have the blood test and the stool test to tell me what I need to know, not to mention my instinct. So we are going gluten-free full steam ahead!

Thanks for letting me ramble (maybe I shouldn't post late at night ) and like always, keep your fantastic food suggestions coming! Natalie

[ckmom]

We purchased a Cuisinart bread maker from BEd, Bath, Beyond and it has a gluten free option!

[Fiddle-Faddle]

Hmm. Maybe I need a new bread machine? I have a Toastmaster, and both times that I tried to make gluten-free bread in it, it overflowed during the rising cycle, and I ended up with a half-burnt and half uncooked MESS.

I don't mind baking in the oven during the winter, but would LOVE to have a bread machine for the summer so I don't heat up the house.

Let's see, so far Cuisinart, Oster, and Zojirushi sound like good possibililties!

[Pacer]

We purchased a Cuisinart bread maker from BEd, Bath, Beyond and it has a gluten free option!

Wow - that is a nice example of how gluten-free awareness has eveloved in the last few years. Let's keep it going everyone!! :-)

[Juliet]

I purchased a Breadman Ultimate Plus breadmaker when my son was diagnosed for about $110 at Sears and it has a gluten free option along with some gluten free bread recipes. But I have never used it. When I use Gluten Free Pantry sandwich bread mix, I just use the 2lb. regular setting on medium crust (the first default option). When I make Lorka's Flax Seed Bread (love it - use 1 cup sorghum flour & 1/2 cup brown rice for the gluten free flour mix and garfava flour - see the Baking section under this forum), I use rapid rise yeast and therefore use the rapid rise bread setting. It's great - I just put in the ingredients, scrape down the sides a bit after it's been mixing for a few minutes, then walk away. I literally start it about 10-15 minutes before I go to bed, and the next morning there's a loaf of bread waiting for me to slice.

[VydorScope]

We purchased a Cuisinart bread maker from BEd, Bath, Beyond and it has a gluten free option!

I wonder what that setting really does. Im guessing its a placebo My Oster ExpressBake was $50 at target and has no such setting yet makes gluten-free bread fine. I just do not tell it other wise.

It is great that some more companies are becoming gluten friendly and if I was buying again I might consider spending a bit (not much! Me poor!) more to get a machine that mentioned gluten-free vs one that did not....