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My Daughter Was Just Diagnosed

Hayleesdad

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Hayleesdad Rookie
Hayleesdad
Posted

We live in the mid-west(mo)I'm finding it difficult to find gluten-free foods.

Do you have to order everything?She's 6 years old and very picky.

I'm finding this very difficult.

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jerseyangel Proficient
jerseyangel
Posted

Hi dad, and welcome to the board! :)

There are many naturally gluten-free foods that you can get at any grocery store. Meats, poultry, fish, eggs, some yogurts and cheeses, fruits, veggies, peanut butter, jellies, etc. Even a few cereals.

For the specialty mixes, flours, breads and those kinds of things--do you have a Whole Foods, Wild Oats or a local health food store? I actually find that my larger grocery stores are carring more and more gluten-free products.

Look for Tinkyada Pasta--it's very good. My local Acme even carries it.

Try not to let this overwhelm you--the diet gets easier with time. Feel free to ask any questions you have--someone here will know the answer--or tell you where you can go to find it!

Sweetfudge Community Regular
Sweetfudge
Posted

Unless you have stores around, or can just make naturally gluten free meals, I would suggest using amazon .com they have tons of gluten free food in the grocery and gourmet sections. let us know, there's lots of knowledgeable people here who are ready to help :)

Budew Rookie
Budew
Posted

I am from WI.

All of the suggestions so far are great.

I do a lot of ordering on line. Amy's Foods is carried in many stores. Their website makes shopping easier by sorting out the products for you. Given this is a kid, Amy's gluten-free mac & cheese is good.

IGA carries some things, so does Woodmans.

FYI- Hershey Kisses, milk chocolate bars, jolly ranchers are gluten-free candies.

Kraft labels are excellent. If they have gluten they will disclose it on the label.

When in doubt of a favorite food or brand I call the company directly.

I have found alternatives for almost everything.

What are you looking for?

Maybe we can make this easier for you and her.

linds Apprentice
linds
Posted

I live in a small town in northern Minnesota and there are very few options. I either make naturally gluten free meals such as meat, fish, potato, rice, fruit, and veggies. Otherwise I order my stuff from amazon .com.

Nantzie Collaborator
Nantzie
Posted

If you feel comfortable saying what city is closest to you, someone may know of something there or nearby.

The best/easiest thing to do is just eat things that are naturally gluten-free, and then experiment with replacement products such as breads, pizza crusts, cookies, etc.

Other than that, I order a lot of stuff. It's the easiest, least time-consuming way to do it. It gets aggravating to drive all the way cross town to a health food store only to find out that the one item I really need is out of stock or not being carried anymore.

The thing that I did when I went gluten-free is pick one thing that I was really missing (crackers), and just tried a new brand/style when I got a chance until I found something I really liked. (Ener-G Wheat Free Crackers were my and my kids favorites.)

This board is a great way to wade through all of the options by looking at other people's opinions of products. For example, if your daughter is missing sandwiches, it'd be helpful for you to ask about that because some gluten-free breads practically disintigrate (sp) if you try to use them for sandwiches. But there are others that work really well.

Nancy

Hayleesdad Rookie
Hayleesdad
Posted
  • Author

Well thank you all so much.I'm dealing with this alone(single parent).I thought that was hard.NOW this.

I appreciate the support of the forum.I'm really glad I found this.

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Canadian Karen Community Regular
Canadian Karen
Posted

Hi! Welcome to the board!

Make sure you look up a member here by the name of nini. In her signature, she has a link to a "Newbie Survival Kit" that is simply amazing...... it will help out alot.

Any questions, regardless of how minor it might seem, go right ahead and ask - there's a great bunch of people here......

Karen

jerseyangel Proficient
jerseyangel
Posted
Well thank you all so much.I'm dealing with this alone(single parent).I thought that was hard.NOW this.

I appreciate the support of the forum.I'm really glad I found this.

You're very welcome :) Let us help you!

Read through the older posts--there are lots of food ideas in the recipe and product forums, and check out the Parents of kids and babies with Celiac.

You're not going to have to deal with the Celiac part all by yourself--anything you need, just ask :)

Hayleesdad Rookie
Hayleesdad
Posted
  • Author
You're very welcome :) Let us help you!

Read through the older posts--there are lots of food ideas in the recipe and product forums, and check out the Parents of kids and babies with Celiac.

You're not going to have to deal with the Celiac part all by yourself--anything you need, just ask :)

thanks

LauraW Rookie
LauraW
Posted
We live in the mid-west(mo)I'm finding it difficult to find gluten-free foods.

Do you have to order everything?She's 6 years old and very picky.

I'm finding this very difficult.

Hi Haylees dad,

If you have a Meijer's there, there is a small gluten free section there. Good luck!

GFBetsy Rookie
GFBetsy
Posted

This summer a health food store opened in Chillicothe, MO. The address is 424 Washington. I'm not sure if they are still open . .. the last couple of times I've called them, no one has picked up the phone. But I know that they had a gluten free section. So if you're anywhere near Chillicothe, that might be an option. If it will take you a while to drive there, I'd probably call someone at City Hall in Chillicothe and ask them if the store is still open . . . they'll probably know or be able to find out for you. The name of the store is Pure N' Simple.

Good luck!

angel-jd1 Community Regular
angel-jd1
Posted
We live in the mid-west(mo)I'm finding it difficult to find gluten-free foods.

Do you have to order everything?She's 6 years old and very picky.

I'm finding this very difficult.

I'm not sure how close you are to KC. There is a Wild Oats on 119th. There is also a Whole Foods Market over by 95th on the Kansas side. Both are good places to pick up things.

Hy-Vee's are a great place to shop. They have a natural foods section with tons of gluten free foods.

A year or so ago Wal-Mart has started labeling their "Great-Value" brands if they are gluten free, look for it under the ingredient statement usually. They have also started carrying Sunstart Bakery gluten-free cookies and also Van's plain gluten-free waffles. (At least in my area in Kansas).

Like mentioned before, there are tons of natually gluten free foods.

The specialty items are where you run into the cost.

Try to keep it as simple as you can.

Some good "Kid friendly" things are:

Amy's rice crust pizza

Ian's Allergen free chicken nuggets

Ian's Allergen free fish sticks

Tinkayada Pasta and Velveeta cheese

Mission Corn tortillas topped with pizza sauce peparoni and cheese, bake in the toaster oven for 10-15 min.

Frito Lay Chips (see their website for a complete list of gluten free items)

Skippy Peanut butter

Jiff Peanut Butter

Kraft is a great brand, they will list any gluten containing ingredients right on the label

Blue Bunny IceCream (of course the obvious cookie, cake type ones are out)

Edy's IceCream (again the obvious ones with cookies and such are out)

Bryers(obvious cookie/cake varities are out)

Lunch Meat roll ups (hillshire farm lunch meat with kraft singles cheese rolled up)

Hope that gives you a small start.

-Jessica :rolleyes:

abigail Apprentice
abigail
Posted

hi, I've found that several product Great Value brand (wallmart brand) are happily marked clarly GLUTEN FREE. and they are really inexpansive too!!

hope this is usefull for you...........!

abi

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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
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      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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