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New To Celiac......

daltons

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daltons Rookie
daltons
Posted

We just found out earlier this week that my step son has Celiac Disease. We are FULL of questions and I'm hoping that some of you more experienced out there will be able to help us. We are still learning, but is there anywhere online we can go to find a list of brand name products that are gluten free. I don't necessarily mean the products you can find in the gluten free section of the health food store, I mean normal every day products....some of the less obvious ones. We need all the help we can get. My step son is 4 1/2 and he pretty much can't eat anything that he loves anymore. It is going to be a hard transition, as I'm sure you've all experienced. Any advice?

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Lisa Mentor
Lisa
Posted

Yes, we have a wonderful member of this board, who has done a great deal of research on behalf of the new people comming on board. She has created a "newbie survival kit". It will be a gold mind for new celicas.

Please do a search for member's name: "nini", click below her name and you can down load a wealth of information.

flagbabyds Collaborator
flagbabyds
Posted

Many companies have a list of their online products for that company. I know that fritolay has a list and you can also look in the site index (on the left side of the board) they have a list of safe and forbidden ingredients

Nini's survival kit is also very good and I would look into it and talking to Nini.

happygirl Collaborator
happygirl
Posted

Welcome to the board! We are happy you have found this site...is it by far the best resource out there.

Are you looking for specific products ... that might be easier to get you started. Ingredients change at any point, so its hard to put out "lists" per se. Reading ingredient labels will be the best thing you can learn to do, because then you can look at anything and 98% of the time, know if its safe or not.

Check out the book in my signature...it is a wonderful resource. I wish I had it when I was first diagnosed. You can find it on amazon. I refer to it often! He is an expert in the Celiac field.

Good luck, and let us know what we can do! It is a steep learning curve, I won't deny that! But, once you figure it out, then you get a new routine. And we will be here to help!

Laura

daltons Rookie
daltons
Posted
  • Author

Wow, thank you guys for being so helpful! The resources on Nini's website are awesome, I couldn't ask for a better starting point. My step son spends so much time with other members of his family, and they will probably all need to have as much information as possible. You've all been so helpful, thank you so much.

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    • 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.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
    • trents
      Finding gluten free ingredients

      By trents · Posted

      Welcome to the forum, @Kara S! Warrior bread is a grain free bread product. Google it. There are commercial mixes available, I believe, Youtube videos and many recipes. 
    • knitty kitty
      Gluten related ??

      By knitty kitty · Posted

      @Colleen H, I have had similar reactions and symptoms like yours.  I started following the low histamine Autoimmune Protocol diet developed by a doctor with Celiac Disease herself, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, is very helpful in understanding what's going on in the body.   Not only do you have antibodies attacking the body, there are mast cells spreading histamine which causes inflammation.  Foods also contain histamine or act as histamine releasers.  Our bodies have difficulty clearing histamine if there's too much.  Following the low histamine AIP diet allows your body time to clear the excess histamine we're making as part of the autoimmune response, without adding in extra histamine from foods.  High histamine foods include eggs, processed foods and some citrus fruits.  The AIP diet allows meat and vegetables.  No processed meats like sausage, luncheon meats, ham, chicken nuggets, etc. No night shades (potatoes, tomatoes, peppers, eggplant).  No dairy.  No grains.  No rice.  No eggs.  No gluten-free processed foods like gluten free breads and cookies.  No nuts.  No expensive processed gluten-free foods.  Meat and vegetables.  Some fruit. Some fruit, like applesauce, contains high levels of fructose which can cause digestive upsets.  Fructose gets fermented by yeasts in the gastrointestinal tract.  This fermentation can cause gas, bloating and abdominal pain.   The AIP diet changes your microbiome.  Change what you eat and that changes which bacteria live in your gut.  By cutting out carbohydrates from grains and starchy veggies like potatoes, SIBO bacteria get starved out.  Fermenting yeasts get starved out, too.  Healthy bacteria repopulate the gut.   Thiamine Vitamin B 1 helps regulate gut bacteria.  Low thiamine can lead to SIBO and yeast infestation.  Mast cells release histamine more easily when they are low in Thiamine.  Anxiety, depression, and irritability are early symptoms of thiamine insufficiency.  A form of thiamine called Benfotiamine has been shown to promote intestinal healing.   Thiamine works with the seven other B vitamins.  They all need each other to function properly.   Other vitamins and minerals are needed, too.  Vitamin D helps calm and regulate the immune system. Thiamine is needed to turn Vitamin D into an active form.  Thiamine needs magnesium to make life sustaining enzymes.  Taking a B Complex and additional Benfotiamine is beneficial.  The B vitamins are water soluble, easily lost if we're not absorbing nutrients properly as with Celiac Disease.  Since blood tests for B vitamins are notoriously inaccurate, taking a B Complex, Benfotiamine, and magnesium Threonate, and looking for health improvements is a better way to see if you're insufficient.   I do hope you will give the low histamine AIP diet a try.  It really works.
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