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Celiac Family: I Need Your Help

ohsroac

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ohsroac Apprentice
ohsroac
Posted

I called and ask for my daughters test results today. The doctor is going to be out of the office for a few weeks, yikes but the nurse loves me and gave me the results. My daughters 2nd biopsy said it was conclusive for Celiac Spur!

I hve tons of questions?

Does Ketchup have Gluten?

Mustard?

Cheese?

Ceral?

Help me get started this week..

Thanks,

Lena

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ptkds Community Regular
ptkds
Posted

Below is is list that has been posted on here before. Read it, start your own word file on your computer to copy and paste everything into, and start collecting recipes.

Good luck! You have come to the right place. There are lots of wonderful people here.

*********************

1. Take a breath!!! You're not going to be able to do this overnight, but it will all come together. We're all here to help, so try not to panic!!!

2. Buy some gluten free treats that make you feel like you can eat!!! I highly recommend Enjoy LIfe snickerdoodles, Chebe breads and pizza crust, Cause you're Special (glutenfreegourmet.com) and Pamela's brands (on sale now at (Company Name Removed - They Spammed This Forum and are Banned)), and Tinkyada pasta. If you don't have a good health food store near you, glutenfreemall.com is a good place to start and order from.

3. Go through your pantry and call the 1-800 #s on the backs of the package to see if they're gluten-free. Ask the manufacturers for gluten-free food lists. Most are great about this and will also send you coupons. The web also will have some companies' lists. This takes some time, but it helps you identify what you're already using that could be gluten-free.

4. Do the same with your med cabinet. Call about any drugs you take. This is sometimes harder to get info on, especially with generics. Vitamins, pain killers, cold meds, topical meds, everything has to be checked.

5. Move on to your health and beauty supplies next. This may not seem like a big priority, but it really is. Especially anything that goes on your hands. My daughter was VERY sick over some curel lotion we were using, then touching her bottles, etc. Unilever, lubriderm, and suave are some good companies for listing gluten ingredients, so that might be good to start with.

6. You don't have to throw out all your pans, but do be careful. I didn't realize this was an issue for months and months and got glutened several times. I wouldn't use cast iron, wooden spoons, colanders and scratched teflon pans. Other things will probably be ok if you wash them good and use the dishwasher!!!! Some people have used the self clean option on their oven to clean their cast iron.

7. Remember that a lot of pet foods have gluten. Wash your hands thoroughly after feeding animals. Be careful about the animals (dogs especially) licking you or the kids in the mouth or hands.

8. Be aware of Cross Contamination:

*Be careful for to have separate containers of Peanut Butter, jelly, butter, mayo, etc. Bread crumbs in common containers will cause a reaction. Squeezable condiments are great. We keep mayo, mustard, ketchup, and jelly this way.

*Make sure you thoroughly wash your hands between handling gluten and gluten free foods. Purell WILL NOT remove gluten, things have to be washed with gluten-free soap and water.

*Do not cook gluten-free food in a toaster that is used for gluten products.

*Glues often have gluten in them, so avoid using the paper towels with glue on them and watch him when playing with arts and crafts, washing his hands thoroughly afterwards. No licking envelopes, stamps, etc. No playing with the paper towel roll.

*DO NOT fry things in oil that has been used for things with gluten in them. Major source of contamination.

9. Stick with brands you know are safe:

These companies do not hide gluten and always list Wheat, Oats, Rye, or Barley if they use them:

Aunt Nelly's

Balance Oasis (Balance Bars)

Baskin Robbins

Ben & Jerry

Betty Crocker

Blue Bunny

Breyers

Campbell

Ahorsesoul Enthusiast
Ahorsesoul
Posted

In a nut shell, I say everything can have gluten in it. You will have to read the labels on everything. I've decided it's actually fun to read labels. I'm amazed at the things that have gluten in them--orange soda, root beer, soy sauce....

This site and the internet will give you plenty of suggestion of what to eat. Focus on them and not the "can't have thats".

If you dd has this problem, look into your family and see who else may have it. A gluten free kitchen will not hurt anyone.

BRS-07 Rookie
BRS-07
Posted

I just got diagnosed about 2 weeks ago and I would highly recommend the gluten free shopping guide. I don't know what I would do without it.

https://www.celiac.com/catalog/product_info...products_id=802

It makes shopping so much easier when you don't know how to read labels yet. Also, walmart brand products will either say gluten free on the back or identify wheat which is also really helpful. Something I just learned was to watch out for shreaded cheese, some of them use wheat so the cheese doesn't stick together, and paper plates can be coated in wheat for the same reason.

For Cereal: Fruity Pebbles and Cocoa Pebbles are gluten free

I know the walmart brand of ketchup is gluten free, I read a controversy a few days ago about hunts and heinz, so I don't know how safe those are...someone else might be able to help on that.

Delimex chicken taquitos are gluten free

Also if you have a HyVee close by where you live, they have a gluten free list online on their website, as does Trader Joes and Whole foods (which is being redone as of now).

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
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