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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Safe Foods For Folks Like Us
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5 posts in this topic

Back in 2009, someone started a thread to get people who are super sensitive to share "best practices" on foods they've found to be safe. I've learned enough to know that things change in four years.

 

So...I was diagnosed just over a year ago, and for all the medical mystery rollercoastering I did getting that diagnosis, this last year of realizing just how very sensitive I am has been--if not worse, than.. well, not much better. 

 

I seem to do well with the GFCO's "circle-gluten-free" gluten free certification of products that are less than 10 ppm. But navigating what certified products are out there--AND identifying what products that are safe at less than 10 ppm but are not certified by GFCO--would make shopping for me and my family so much easier!  I would love to make everything from scratch, but I'm trying to strike a balance since time is always an issue. For starters, here are some of the brands and products I rely on (caveat: so far, I have not identified other sensitivities, though I can't have lactose after I've gotten accidentally glutened, and I can't handle high doses of casein). But I do react with joint pain, fatigue, brain fog, peripheral neuropathy, sometimes twitching, and difficulty with my left leg even after consuming trace amounts. I don't get those reactions when I eat only washed fresh produce and any of these items:

 

Organicville Pasta Sauce (and ketchup)--it seems to be the least expensive certified gluten-free option
Nuts.com for flours

Shiloh Farms for rice and beans (yes, I"ve reacted to cooked plain, dried beans)

Jovial pasta (I LOVE Tinkyada best, but if I have seconds, I react)

Stonyfield Farms and Chobani Yogurts

Rudi's and Udi's breads, Van's waffles and Gorilla Munch Cereal (though I don't eat them, I know I can)

NuGo bars and Svelte shakes (for instant food on the road and when travelling).

 

Any shortenings, mayonaise, mustards, lasagna noodles, cheese substitutes, vegetarian meat-subsititutes, etc.??? Cheaper (and not certified) versions of my staple products?

 

When you eat beyond just fresh produce, etc., what do YOU eat?

 

 

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I have found that sensitivity levels vary widely, even among people who call themselves super sensitive.  It may be in part from unidentified other intolerances.  It is probably in part from misidentification of the source of the glutening.  I am good with Organic Valley 100% grassfed milk, Wegmans organic single source coffee, Wegmans sparkling water, and Bariani olive oil.

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I am not too good with gluten free products , but I am also extremely sensitive to gluten full products- I try to keep my diet conservative and I feel great if I do so-except of gluten free bread, soya sauce, pasta and flower I make my own food from scratch almost always. Also I find gluten free products quite off putting- just looking at the list of ingredients makes me feel like I am not sure whether I even want to have them near my mouth!

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For lasagna noodles, Jovial makes these, too. I haven't seen any in the stores but you can order them online: http://www.jovialfoods.com/products/brown-rice-pasta-gluten-free.html

 

For mustard, it's surprisingly easy to make, if you have a safe vinegar. 

 

For a fat, we ended up learning how to render our own fat. Many butcher areas at the store will save the fat for you if you talk to them beforehand, and sell it to you for not too much. Very easy to render, and if you do it right, it's a neutral smell and taste, like shortening. I never could find a shortening that worked for us. 

 

And you may want to check on the Gorilla Munch cereal if you get it again. My kids would have them as snacks at the grandparents sometimes, so I've been watching them, and for a while, they added the 'also processed in a facility that processes wheat' label for some varieties, and then only some of them I found did. Not sure where they're at now. I'm assuming there was some changing up of facilities and products, possibly, but if that's ever an issue for you, you may want to check the particular box you're buying, just in case. 

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    • Newbie: mother to coeliac kids
      If uncooked, he might have difficulty digesting them because eating ANYTHING with a Marsh Stage 4 gut is bound to hurt.    If pickled, he might be reacting to any of the ingrediants even though they could be gluten free.   Often, celiacs develop several food intolerances.  Lactose intolerance is the most common.   I'd recommend keeping a food diary and well-cooked stews, soups for a few days or weeks until his symptoms improve.   Good Luck!  
    • Newbie: mother to coeliac kids
      Research indicates that the celiac disease blood test results do not necessarily correlate with intestinal damage.  My blood tests were "barely positive" yet I had a Marsh Stage 3B (moderate to severe damage).   But that's not important.  Your boy's health is more important!   I can see why he is suffering so much.  The good news is that he should feel well much faster because he is young.  My heart goes out to you and your family!  
    • Newbie: mother to coeliac kids
      Sorry, but I would have to remind you and those who are newbies, that a whole foods, well-cooked diet is probably best.  Avoid all processed foods.  If you have severe intestinal damage, the villi tips are so damaged (or non-existent) that they can not release all the necessary enzymes, etc. to help a person digest and absorb food well or barely!!!  Many celiacs are lactose intolerant until healing occurs (for life if you are genetically lactose intolerant like many Asians, for example).  Many celiacs have developed additional foods intolerances, so it is recommended that you keep a food and symptom journal.   Some folks might be corn intolerant and other might have issues with nightshades (like potatoes).  Others might have issues with even a good veggie like cauliflower.  I personally can not digest cauliflower after a good glutening for some unknown wacky reason.  What I am trying to say, is that everyone has to figure it out on their own because we all have different issues related to celiac damage.  Lactose intolerance is the most common and a good place to start especially with SEVERE intestinal damage like Marsh Stage 4.   
    • need advice
      Welcome!  The only way to find out if you have celiac disease is to get tested.  Here are the tests that your GP can order for you: http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/ THIS IS IMPORTANT!  YOU MUST BE CONSUMING GLUTEN DAILY FOR THE BLOOD TESTS TO BE ACCURATE.  THIS ALSO INCLUDES THE ENDOSCOPY (BIOPSIES) WHICH ARE DONE BY A GI.   Anxiety can be a symptom for celiac disease.  Please do some more research so that you can get a proper diagnosis.  Can you go gluten free?  Sure.  That's what my hubby did 15 years ago per the very poor advice of my allergist and his GP.   Twelve years later, I was diagnosed.  Weird, huh?  Anyway, hubby will tell you that I get way more support.  He get's a lot of eye rolling.  Plus, our kid (and my folks and siblings) get screened every few years because I have a diagnosis.  My kid gets tested every couple of years even without symptoms because you can be symptom free and still have celiac disease.  celiac disease is genetic.   It is an autoimmune disorder triggered by gluten.  It is the only autoimmune disorder that is triggered by something known.  If you have RA, MS or Lupus, for example, doctors do not know what actually triggers these other autoimmune disorders.   So, Keep researching.  
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