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

Pre-tested Newbie With Lots Of Questions


SwirlyGirly

Recommended Posts

SwirlyGirly Newbie

Hi, I finally caved in and tried a gluten-free diet after years of mystery sicknesses. My diet was very heavy in gluten as I was a major pasta lover and the daughter of a baker. For years, I've suspected that I have a gluten intolerance, but always dismissed it because I was too afraid to admit that I need to change my diet drastically. My symptoms were chalked up to IBS with constipation and generalized panic disorder.

Now, I have been off gluten for a month, eating only fruits, veggies, dairy, seafood and meat that I've been making at home. I didn't know what to do, so I basically took out all grain, starches and all processed foods. And almost immediately I began to feel better. I am happy to say that I am free of daily, constant stomach aches for the first time in over 5 years. The tingling feeling and numbness in my fingers has gone away. I had an on-going pain on the left side of my abdomen has disappeared. And my joints feel like new. But, I'm still very much confused.

I need to begin expanding my diet to allow for other gluten-free foods, but I don't really know how. I live abroad from the US, and the medical care here is not exactly fantastic. I still haven't made an appt to see a Dr to discuss the possibility of having a gluten intolerance. And, I seriously doubt that I'll find any specifically-made gluten-free products in the stores.

I have a lot of newbie-type questions that I would love someone to answer. Thanks in advance for any help!

If I've been gluten-free for over a month already, can I still get a blood test? I am 100% unwilling to reintroduce gluten into my diet out of pure fear. If not, what should I do? I don't even know if they test for this here at all.

Can I eat non-wheat based commercial cereals like Corn Flakes?

How about Risotto?

What are safe go-to meals that I can order in restaurants?

I hope I posted this in the right place. And thanks so much for any help or advice!


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



Celiac.com Sponsor (A8-M):



TrillumHunter Enthusiast

Testing-if you are off gluten it can give you a false negative. You can order a gene test and, coupled with a positive dietary response, be done. There is nothing the medical community can do for you.

Most common cereals are off limits because of malt flavoring. Very few, Cocoa Pebbles is one, are safe and you still need to read the label every time.

Risotto=rice you're good as long as everything added is gluten free. (Make me some, too! :))

Eating out always carries a risk. I eat lots of baked potatoes and salads.

You don't say where you are but some countries are more enlightened than US manufactures. You MUST be a dedicated label reader. There is lots of great info on this site. It has been a real lifesaver for me. Someone here always knows the answer to questions. Plus the recipes are really good as well.

Welcome to the club!

mommyagain Explorer

Tell us what country you're in, I'm sure there is someone on this board who lives in the same country or at least has traveled there.

At this point, you will probably test negative for celiac, so you may never get your "official" diagnosis. This is only really a problem if you end up having family/friends who doubt you. For instance, my husband wants me to have an official dx even tho my dietary response has been amazingly good.

As for food, eating out is always hard. Here in the US there are some chains that have gluten-free menus online, but even then people get "glutened" because the cooks aren't careful enough (or don't know) about cross-contamination. Basically, if you must eat out, and want something other than a plain baked potato or salad, you can usually ask for plain (no marinades/sauces) chicken, grilled. Make sure you tell them that you have "severe allergies" and they need to wrap it in foil before cooking it.

Good luck.

EBsMom Apprentice
If I've been gluten-free for over a month already, can I still get a blood test? I am 100% unwilling to reintroduce gluten into my diet out of pure fear. If not, what should I do? I don't even know if they test for this here at all.

Can I eat non-wheat based commercial cereals like Corn Flakes?

How about Risotto?

What are safe go-to meals that I can order in restaurants?

Do you have access to books where you are? Can you order from the internet or have a friend buy one and mail it to you? The book "Living Gluten Free for Dummies" is a primer on how to eat gluten free. It could help you a lot.

In the meantime....some corn flakes are gluten-free - usually the healthfood store brands - most major brands are not. It's the same with rice-based cereals (Rice Krispies are NOT gluten-free.) If nothing gluten-containing is added to the risotto, you're good. You have to be careful, though - for example, commercially prepared chicken stocks can have gluten. When I need (or want) to eat out, I usually order pan-cooked fish or chicken (you must specify a clean pan for cooking, with NO flour or spice blends with unspecified ingredients to be added; I usually say "only salt, pepper or single ingredient herbs" are okay.) Then I order a salad or steamed veggies on the side. Still, you have to be careful - no croutons on the salad, and I ask for oil and vinegar to add myself, because you don't know what's in a prepared dressing. I've had some pretty good meals out when I've been able to have a conversation with the chef. Many dishes are naturally gluten-free, but you have to check to be sure.

Good luck to you!

Rho

gfgypsyqueen Enthusiast

Hi and welcome to the world of gluten free! Glad to hear you are feeling better on the diet. Here are a few more tidbits of info. First, call al lof the manufacturers of the products that you use daily like makeup, bath products, creams, lotions, etc. Ask if the products are gluten free or label for gluten. I react to contact, some people do and some don't.

Any processed food that you eat needs to be verified that it is gluten free. Gluten is a hidden ingredient you need to watch for. Get a book on gluten written in the local language or get someone to translate the all of the gluten words for you. (Wheat, spelt, etc.)

You can always order products online for pasta, cookies, breads, etc.

Basically the fun part of this disease is the amount of research you end up doing to figure out which foods are safe and how to make the foods you used to love. In my own opinion, if you loved pasta before, wait a few months before trying gluten-free pasta. Some are very good, but they are still different in taste and texture from gluten pasta. I loved pizza and would get really depressed about the diet everytime I ate a gluten-free pizza for the first year. Now I make a good gluten-free pizza.

As for eating out, steak and baked potato or bunless burgers are staples for me. If in doubt, bring food with you.

Good luck and keep reading on this site. Tons of info here.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748

    klkarius
    Newest Member
    klkarius
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.