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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.
    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity

Safe Foods For Folks Like Us

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 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:


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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    • turkey
      Turkey is gluten-free as long as it is not stuffed. You can make a good gluten-free stuffing using gluten-free bread. Dry the bread first and add what ever spices or veggies you wish, but cook it in a separate baking dish because stuffing the bird with it can cause bacteria to breed. And gravy must be thickened with corn starch or potato starch instead of wheat flour.
    • turkey
      so you can't even cook without stuffing inside turkey and not get gluten? Sorry I'm not familiar with turkey and wondering if I can have it while rest of family gets stuffing? In other words is turkey gluten free?
    • Numbness, Tingling in limbs & Joint Aches
      Hi Ender, Although you didn't get a complete thyroid panel, from what I see you are hypothyroid.  Most Dr's only care about TSH and yes yours is in the range, but when mine is that high I get terrible joint aches.  I feel best with mine around 1.  Your free T4 isn't just a tad low...most people feel best with it around 50% of the range.  I think you could benefit from some thyroid replacement medication.  You should also get a full thyroid addition to what you've had done a free T3, TPOAB and TgAb.   The last 2 are antibody tests.  Hashimotos is found fairly frequently with celiac.   Low vitamin D can also cause aches.  It would be really good to have your levels checked again.  Until you are healed you may not absorb it well enough so it's good to keep supplementing.  It took me a year and a half gluten free to get mine to an acceptable level for my Dr and he's keeping me on 2000 daily for maintenence.  For the numbness and tingling my Dr had me add magnesium as I was having horrible tingling in my feet and my B12 was good.  I have to say it has helped a lot. I hope you are able to get this figured out...I would definitely start with a complete thyroid panel and recheck of Vitamin D.  Here's a bit of reading on thyroid stuff if you have time.  Hugs!
    • Positive & Increasing TTG -- questions re: testing & history
      I'm a 31-year-old high school teacher (currently on disability) who has been dealing with 4 years of major gastrointestinal problems, which resulted in major surgery for a rectal prolapse & redundant colon last August, prior to which I had lost about 20 pounds. The source of all my gas, bloating, distention & diarrhea has remained basically unexplained though ("lets trust the surgery resolves your obstructed defecation and in turn your gas... d'oh it made both  worse"  ) , and my symptoms have only gotten significantly more severe since surgery. I'm facing a permanent ostomy. I've also, for the first time in a lonnng time, been eating a lot of gluten every day... primarily out of depression and (misguided?) attempts to gain weight and keep stool soft. I've been typically slightly underweight for 10+ years. Suffered anorexia for a period 10 years ago, and since recovering have "naturally" maintained a low weight and low-wheat lifestyle (I've always been put off by heavy wheat items like bread, sandwiches & pasta, *shrug*). As a child I had crazy severe & unexplained constipation issues. I've also had strong teeth discoloration & marked enamel defects (& two missing adult teeth(?)) since childhood. Depression & anxiety have been longterm issues. I have osteoperosis, which was perviously explained by me being anorexic from 19-22. Everything changed 4 years ago upon the onset of all my (severe) classic-IBS symptoms (gas/bloat/d+c). On a low-gluten diet, TTG bloodwork came back "low-positive" repeatedly. A biopsy showed no damage, but my gluten intake at the time was limited to 2 cookies a day, or occasionally 2 cookies and a piece of pizza. Would this have been enough to show damage? I trialled going gluten-free for a few months, and didn't find a ton of relief... so assumed I was just FODMAP intolerant... however I was eating lots of oats and lactose that whole time, which I have subsequently identified as major triggers... not to mention just lots of gluten-free junk food. Wheat was obviously a significant gas trigger since this hit, but that seems typical for gut illness in general. Since my major surgery and the continuation and worsening of symptoms, I've connected with an internist who has again and again pushed me towards eating wheat as a method towards weight gain and healthy non-anxious eating. I also found that a high-wheat diet would provide the proper consistency (i.e. very loose diarrhea every day) to allow colorectal function (the surgery I had went very poorly and caused major obstructed defecation). I have not had success gaining weight, and have found my digestive system feeling assaulted like never before 24/7 by bloating, gas and discomfort, despite a relatively low-residue diet and constant elimination. My appetite has never ever been worse. I just had a fourth TTG test, and after this high-gluten diet I am now testing POSITIVE as opposed to BORDERLINE. Questions: 1) I suspect my first biopsy's gluten challenge wasn't quite heavy enough in terms of gluten content (couple cookies a day). Thoughts? 2) Could being underweight alone cause an elevated TTG? How about simply having colorectal surgery? "IBS" or the supposedly non-pathogenic gut bacteria blastocystis hominis which I've been diagnosed with? I haven't been diagnosed with any other autoimmune condition, and I'm so confused. So far everyones just shoving the TTG off on IBS/anorexia, which doesn't make sense to me at all. 3) I really don't know what to do right now. I'm 20 pounds underweight, in digestive hell, with most of my medical support still suspecting I'm merely acting anorexic. I most assuredly am not. They want to put me on a tube. I would really like to get off the gluten in order to ease my system and gain weight, as I'm clearly reacting to it and have been deluding myself for the past year trying to recover from this surgery, but I'd also *REALLY* like some diagnostic confirmation so my doctors & family all stop looking at me like I'm crazy, and that so I can act with appropriate caution/freedom in my dietary future. 4) Do my childhood experiences line up with any celiac sufferers? I've heard about enamel defects, but missing teeth or crazy constipation? Obviously osteoperosis could connect, and doesn't *really* line up with my anorexia considering I was already fully grown. 5) Is there any way to get EMA/HLA blood tests done in Canada (BC)??? It's really frustrating that my only chance for any confirmation is waiting months and months here for another biopsy, especially considering how dire the need to improve my digestion is ASAP. I imagine if I could get an EMA test & it came back positive I would just take that as my confirmation and be able to move on with confidence here. 6) Is it common for celiac sufferers to find themselves reacting to FODMAPS and/or histamines in foods while they're  still maintaining a gluten-filled diet? Gluten definitely isn't my *only* trigger right now, and that's probably a primary reason I haven't been led to eliminate it at. Sorry for all the talk & questions, but I'm in an incredibly challenging place right now, my head is just swimming and swimming, and any thoughts would be greatly appreciated!   Bloodwork Current, after six months of a heavy-gluten diet = Tissue Transglutaminase Ab IgA ---18.0 ---- <12.0 U/mL = normal
      POSITIVE -Probable celiac disease but this should be confirmed with a small bowel biopsy. [Tested by a multiplex flow immunoassay
      (BioPlex) method.] 

      6 months ago = Tissue Transglutaminase Ab IgA ---13.0 ---- <12.0 U/mL = normal
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      (BioPlex) method.]

      2012, prior to negative biopsy = Tissue Transglutaminase Ab IgA ---24.0 ---- <20.0 RU/mL = normal
      Weak positive anti-TTG. Consider the possibility of celiac disease - a small bowel biopsy may be required.  
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