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MyOnlyHope4U

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MyOnlyHope4U Newbie
MyOnlyHope4U
Posted

Hello,

I am a teenager who is new to celiac disease. I feel soooo much better since going gluten-free, but I feel like I still may be missing something. About once a week I will feel sick and when I look back on what I ate, i find the culpirate or a potentional one. Im fine with the specialty gluten-free items- but the mainstream products seem to be problematic. I have a couple of questions-

* How do I make sure my kitchen is safe w/o cross contamination?

* How should I handle eating out (this is where most of the problems occur)

* How should I handle school and friends?

Thanks Again! We have had to research this all on our own since my dietition is booked until May :(

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blueeyedmanda Community Regular
blueeyedmanda
Posted

Hi and Welcome to the board.

When dealing with your friends it can be very emotional, If you have a few close friends who you stick with on a daily basis, try to educate them on what you have and the foods you can no longer eat. If you have been sick for awhile, explain that by no longer eating those foods you will start feeling better and be back to hanging out like the good old days. It might take a few times for people to understand. You may encounter people who will never understand, but brush it off and focus on getting better.

I would try to no eat out until you get the diet down and you are feeling better. Places like Outback, Carrabras, Bone Fish Grill, PF CHangs, Charlie Brown's Steakhouse, and a few others have gluten free menus. I only have experience with Outback since the others are not in my area.

Getting the kitchen gluten free can be tricky especially if you have other family members who still eat wheat/gluten. If you eat toast, a seperate toaster is a must. I would buy your own pasta strainer, maybe a few seperate dishes, cups, etc just for yourself to use. I know this sounds like a lot of work. I would wash my own dishes. Maybe is there a way you can get your own cabinet for your dishes and food. This way all of your things can be in one spot.

I hope this helps you.

If you have any other questions feel free to ask. We will be here to help you. Good Luck!!

Guhlia Rising Star
Guhlia
Posted

Welcome to the forum! Don't forget about the silly little stuff like hand/body lotion, makeup, shampoo, hair mousse, lip gloss/chap stick, old cutting boards, etc... Those are easy places to get glutened in addition to what Amanda said.

Lisa Mentor
Lisa
Posted

Welcome again,

This site is your answers to most if not all of your questions. Any question can be answered here. :)

Wendy - www.wendy.com

Taco Bell - www.tacobell.com

Outback - www.outbacksteakhouse.com

Olive Garden - www.olivegarden.com

Noodles & Co. - www.noodles.com

McDonald's - www.mcdonalds.com (fries, are controversial)

Hard Rock - www.hardrockcafe.com

Don Pablo's - www. donpablos.com

Dairy Queen - www.dairyqueen.com

Chilie's - www.chilis.com

Chic-fil-A - www.chickfila.com

Chevy's Fresh Mex - www.chevy.com

Arby's - www.arbys.com

Check out these sites, maybe this can open up more options for you to hang with your friends and not feel so different. :)

Guhlia Rising Star
Guhlia
Posted

Momma goose, I e-mailed Hard Rock Cafe about a month ago and they told me that they absolutely cannot cater to those choosing a gluten free diet. They were actually kind of rude I thought.

Lisa Mentor
Lisa
Posted
Momma goose, I e-mailed Hard Rock Cafe about a month ago and they told me that they absolutely cannot cater to those choosing a gluten free diet. They were actually kind of rude I thought.

Rude and cannot cater....well the heck with them!

blueeyedmanda Community Regular
blueeyedmanda
Posted
Rude and cannot cater....well the heck with them!

LOL....well, they are just missing out on some great guests!

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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

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    • 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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