Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New To All Of This

MaryanneQ

Recommended Posts

MaryanneQ Apprentice
MaryanneQ
Posted

Hi - I'm new to all of this and a little overwealmed.

My 6 yo son is not "officially" disgnosed with celiac disease - yet. He had positive blood tests but negative biopsy. His Pediatric GI is repeating all blood tests, doing a special Celiac Panel through a special lab, ordering fecal tests, sweat test for CF(a waste since I am not a carrier) gave me the option of repeating the biopsy or doing a year gluten-free Diet with a gluten challenge afterwards and another biopsy possibly. FYI - He is VERY small for his age, has attention issues, speech issues, severe dental issues and is anemic but no other "physical symptoms" - no pain, bowel issues etc.

SO - on we forge to a gluten free diet. This will be a challenge as he is very picky and will not eat some things because of his teeth and oral sensitivities. Basically every single thing he eats is full of gluten - PB&J, Grilled Cheese, Mac and Cheese, chicken nuggets, Spaghetti, toast, cereal etc..... I have two books already and have read quite a bit and have tried some gluten-free staples and all I can say is - GROSS!!!

So basically I just need some guidance from the "Pros" -

I need to know what bread is the best and closet to "regular" bread - He eats PB&J EVERY day and the bread I found just didn't hold up - in fact it crumbled when I was just trying to take it out of the bag?!?!? (And was $4.50 for a small loaf - grrr) Also how does it hold up for grilled cheese etc?

What's the best cake mix? Are "store" frostings ok?

What about bread crumbs? Best macaroni and cheese? Best pasta?

I need all the favorites and tips you want to throw at me. Plus how about money saving tips? I know this is going to be so expensive for a family of 4 and a baby(We will all go gluten-free if Nick has to go gluten-free)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


LisaS Newbie
LisaS
Posted

MarryanneQ,

I am by no means a "Pro" yet. I have my biopsy on May 13. But I am planning on going gluten free after the biopsy regardless of the diagnosis, so I have been checking labels, looking for web sites, and contacting manufactures. I also plan to limit gluten for my two children (8 & 11). These are the gluten free items I think kids would like:

Act II and Pop Weaver microwave popcorn

Fritos

Cheetos

Ore-Ida Golden Crinkles (not all Ore-Ida French fries are gluten-free, but I have the complete list)

Tillamook yogurt

Bush

gf4life Enthusiast
gf4life
Posted

Hi Maryanne,

We use Kinnikinnick bread. It is lighter than most gluten-free breads and doesn't crumble, but it is a bit chewier than regular gluten breads. My kids like it toasted, and I imagine it would be fine for grilled cheese (haven't tried it since we are all off dairy right now).

You can sometimes find it in US healthfood stores, or you can order it online at Open Original Shared Link . Shipping is $10.00 no matter how much you order. the bread is pricey at $4.50 a loaf and only 15 slices in a loaf, but it is worth it to me. I can't stand the dense dry crumbly loaves of gluten-free bread I was wasting my money on before. This bread is more like normal bread. I have tried the Sunflower Flax Rice Bread, Robins Honey Brown Rice Bread, Candadi Yeast Free Multigrain Rice Bread, and liked them all. The yeast free one was more dry than the others. They sell a white sandwich bread that is supposed to be very good, too. I plan to try that with my next order. We have also tried their donuts. We liked the cinnamon sugar and the chocolate dipped ones.

The most liked pasta in our family is Tinkyada brown rice pastas. I have served these to non-gluten-free people and they couldn't tell the difference. They taste great. Lundberg farms is good too. We did not like DeBoles brand, but others have said it is their favorite. Stay away from the bean pastas. They taste nasty.

The best cake mix by far is Chocloate Cake by Really Great Foods. I buy mine from Gluten Solutions. Open Original Shared Link Their muffins and yellow cake are good to, but the chocolate is the best we have ever had. My kids and I like it better than "regular" chocolate cake. It tastes so good, they like it without frosting. I decorate it with powdered sugar.

If you want frosting the ready made Pillsbury is gluten-free. They will list on the back if it contains wheat, milk, soy, etc. as far as the allergens go. We use the white frosting, milk chocolate and chocolate fudge flavors of frosting.

Since we are dairy free we don't do mac'n'cheese right now, so someone else will have to help you out there.

God bless,

Mariann

LisaS Newbie
LisaS
Posted

MarryanneQ,

Just some more thoughts

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,133
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • 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.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.