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Celiac Mama/autistic Daughter

knitaddict

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knitaddict Apprentice
knitaddict
Posted

Ok, so the title probably says it all, but I'll tell it again anyway: I've PROBABLY got celiac...they really couldn't tell from the biopsies....came back "undetermined" and the bloodwork only showed SLIGHT elevations...anywho, in the interest of NOT having diarrhea for the REST of my life, I've opted to go gluten free. So far, it's been about 3 days and I feel SO MUCH BETTER! I did, however have a little problem this morning...some...ahem...."looseness"....as it were. I figure that it takes a little time to get all that gluten out of ye olde system...so I'm just shining it on and hanging in there.

Ok---so that being said, I also have an autistic 3 year old. She is nearly completely non-verbal, has speech 2x a wk, occupational 2x a wk, and physical therapy 1x a wk...she's in a special needs preschool. She's only MILDLY autistic and the light of my every waking moment...she's a sunny little girl with amazingly curly hair and a deep and abiding love of ALL THINGS WHEAT. Well, since I'm going gluten free and it's ALSO a recommended therapy for autistic children, I figured "What the hell?? Why not?" right??? So she's been doing VERY WELL these past few days...but I'm having a TERRIBLE TIME trying to find her snacks and breakfast foods. She can tolerate most things that we'll be eating for dinner...and if not, I've bought some Amy's Kitchen gluten free mac and cheese and Ian's gluten free chicken nuggets and fish sticks. So, if we're eating something she doesn't like, she's still good. I still need some ideas to replace her ADDICTIONS.....mainly Goldfish, Mini Nilla Crackers, Oatmeal at breakfast...etc. She's a creature of habit....nearly every morning, we would have a big bowl of quaker oatmeal and a carton of Yoplait. Well, the yogurt is gluten free...but that oatmeal is NOT. For the past few days, she's been eating some apple cinnamon gluten free muffins that I made....but I'm QUICKLY running out of those! I need something EASY for those hectic school mornings. For snacks, I've found some gluten free cereals (Perky-o's?? and Gorilla Munch) but those are packed full of sugar! Now, I'm not one of those Mom's who's all freaky about sugar....don't giver her CAKE for her birthday, it's got SUGAR in it!!!!! :lol: No, that's not me....but I DO want her to have some snacks that are more savory than sweet....something like crackers....plus, she LIKES crackers!!! I've found crackers for the adults in the family....but they're a little TOO CRUNCHY and.....grown up for her tastes. I've found Blue Diamond Almond crackers....which, by the way are FAB with Allouette (surprisingly gluten free! woohoo!).

Ok--so this got all long winded....sorry! Just please help me come up with some good snack and breakfast ideas!!!!!!!! Thanks!

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purple Community Regular
purple
Posted

Hi, these links might be of interest:

Open Original Shared Link

allergy/autistic/lunch box ideas that sound fun and healthy

Open Original Shared Link

kid friendly ideas, lots of substitutes, click on the recipe section near the bottom

Open Original Shared Link

super yummy waffles, I use 1 1/2 cups almond milk

"Cooking Free" by Carol Fenster has a recipe in her book for vanilla wafers that are great and you can make crumbs for pie crust with them too. Its a book loved by many.

Curious question: Have you had your dd tested for heavy metal toxicity and is she going to be off dairy??

I am not an expert at all but I have read a little about it.

purple Community Regular
purple
Posted

I just skimmed thru this web site:

Open Original Shared Link

Its very informative.

I always wonder about mercury b/c I have a bunch of those silver fillings I got as a kid but I didn't pass it on to my kids as far as I know. And they had all those "shots" too. I wish I new differently back then about what I know now.

Learn all you can asap so she can get alot better while she is still young and growing. There are answers to be found.

Open Original Shared Link

missy'smom Collaborator
missy'smom
Posted

Pamela's pancake mix is very good. If you like it, it comes in a large bag too so is more economical that way, it can be used to make waffles too. I like cornbread for breakfast.

I recently saw some new cookies in the market that were a small vanila cookie, Cherrybrook Farms was the brand I think

Mi-Del makes very good animal cookies, just be sure they are the gluten-free version aas they also make non-gluten-free cookies.

Glutino makes some round ritz style cookies, they are less buttery and a little more like a soda cracker(the plain ones anyway)

Rice Chex from General Mills is gluten-free

it is recommended that you wait to introduce oats until you are healed, and than slowly in small amount, as some Celiacs react to a component that has some similarity to gluten, when you go, you have to use certified gluten-free oats, as the mainstream oats are contaminated with wheat

there are some other hot cereals out there that are gluten-free, Bob's Red Mill makes Mighty Tasty Hot Cereal, which I really like, they make both gluten-free and non-gluten-free, so be sure that your packages say gluten-free on them

gluten-free pretzels taste just like reg, ones

Making and freezing batches of things will help you alot-make batches of small pancakes and freeze for those busy mornings.

Here's a link to someones who has a gluten-free goldfish recipe. I've never tried it. Open Original Shared Link

we eat alot of fresh fruit and fruit based snacks-dried fruit, freeze dried fruit, no sugar added fruit leather, 100% fruit juice gelatin made with Knox gelatin, 100% fruit juice popsicles made with cheap popsicle molds(check the dollar store) also popcorn popped in an air popper you can make cocoa krispy treats with reg. marshmallows and Envirokids Koala Crisp

ek327 Newbie
ek327
Posted

ians chicken strips (come only in meals, not by themselves) are much better than the nuggets. whole foods carries another brand something farms, that is much better. the nuggets by ians have an odd texture that my daughter won't eat. and i know that texture can be a big thing with autism.

schar's has a gram cracker that tastes more like a nilla wafer than a gram to us, which I think is pretty good. comes in chocolate, too.

post cocoa crispies are gluten free, i believe.

van's makes a gluten free mini-waffle in the freezer section that emma loves. (for some reason, she likes the minis better than the regular--of course, they are harder to find).

find a bread she likes, and toast it with peanutbutter, nut/seed butter, jelly, nutella, etc. My emma likes "cooqi" breads.

We have not found a good replacement for cheese nips/cheezits/goldfish. Bette Hagman's gluten free gourmet has a cheese breadstick recipe which can be rolled out really thin and baked for a cracker.

Tings--by makers of pirate's booty and veggie booty--are good snacks as well.

good luck!!

ShayFL Enthusiast
ShayFL
Posted

Didnt someone recently say that Glutino had new Ritz type crackers in flavors and one of them was close to "Cheez its"????

This must be them:

<a href="Open Original Shared Link free.com/Glutino-Cheddar-Crackers/Item108012" target="external ugc nofollow">Open Original Shared Link free.com/Glutino-Cheddar-...kers/Item108012</a>

Oh and if you want to do oatmeal buy gluten-free oatmeal. Several companies make it. It is not fast cooking. But one trick is to use a crock pot. You put it on right before bed and it is ready to eat in the morning and will have the consistency of quick cooking oats.

Open Original Shared Link

Open Original Shared Link

ShayFL Enthusiast
ShayFL
Posted

ok that link didnt work:

Open Original Shared Link

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Janessa Rookie
Janessa
Posted

you can make crackers with Chebe mixes, I made them with the cinnamon mix and I thought they tasted a lot like cinnamon graham crackers. They have a recipe on the regular mix to make cheesy goldfish like crackers.

Maybe instead of oatmeal try buckwheat, I also make lots of muffins, ect... and freeze them so I have an easy breakfast anytime.

knitaddict Apprentice
knitaddict
Posted
  • Author

:o:o:o OMG.....WOW!!!!!!!!!!!!!!!!!!!!!!!! Thanks to ALL of you for all the great ideas!!!

Of course, the easiest thing to find was the rice chex which I PROMPTLY made into gluten free Chex mix....it you'll pardon my French...it kicked ASS. She has been munching AWAY on that this week....but I ALSO found the Mi Del gluten free gingersnaps...she likes those too. Let's see...what else....OH! I found some....damn, what was it called....Pacific foods??? Maybe??? Anyway...they make gluten free soups in these big cartons. Tomato soup has always been a mainstay in this house and I was SO surprised to find that Campbells had gluten in it...I was SURE that that was going to be one of the things that I DIDN'T have to change!!! Ugh---no worries though, she loves that Pacific cream of tomato soup. I also made her a big batch of gluten free vegetable beef soup. (She's a big time soup hound...that's how I get her veggies in...I swear that kid will eat anything...I could probably get her to eat BEETS...as long as it was in the form of a soup! :rolleyes: )

Let's see what else....oh, the Ian's chicken nuggets...I couldn't find the tenders...but it didn't matter, she sucked those nuggets right down. She had the fish sticks w/Amy's mac and cheese(rice pasta) last nite for supper. We, on the other hand, had nachos......uber healthy, I know. :P I'm so TOTALLY not having a problem with the whole Mexican food thing...bring it ON. I'm just LUCKY that I love that stuff anyway!

I'm trying to think of what other stuff I got for her....she's eating Trix and Gorilla Munch cereals....I found some Pamela's? shortbread cookies...we ALL sucked those down....there's like 2 left!

I'm glad to hear about the Pamela's pancake mix getting a good review from you guys....I ALMOST bought it the other day...but I chickened out...I was afraid that it would totally suck......like that NASTY ener G bread. O.M.G. I will NEVER buy that crap again...it left the FUNKIEST taste in my mouth for the REST OF THE DAY.

Well, though I don't have much to share in the way of "things that have worked"...I can tell you this: I made my first "Non-breadcrumb" Meatloaf the other nite. It was from a gluten free cookbook. I can't remember the name of the book OR who wrote it....but she recommended grating a raw potato...skin and all...into the meatloaf and using THAT as the "binder" instead of breadcrumbs. OMG, it was DELICIOUS! I basically made my own meatloaf...same one I've made for YEARS, but I substituted the potato and it was SO GOOD. I haven't had a meatloaf that juicy in YEARS....I think I was drying mine out w/all those breadcrumbs. So there...I hope that helps someone ELSE since you guys have been so good to help ME! :D

Tonight: Chinese Cashew chicken and white rice. Fingers crossed! :)

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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