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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.

Looking For Non-Bob's Red Mill Products
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9 posts in this topic

I've gone completely grain-free and processed-food free. It's been a month, and I feel slightly better. (2+ years gluten-free, 1 year corn free, tried other eliminations, this is the one that seems to be working).

I'm definitely super sensitive, but sometimes my reactions are subtle. I've heard from many that can't do Bob's Red Mill products (maybe a secondary oat sensitivity or who knows?), so you're the ones I'd like to hear from. I'd really like to make some tapioca flour cheese bread or be able to thicken gravy, but I'm not sure what to use as a trusted brand. Any ideas?

I'm specifically looking for grain-free starches: potato, tapioca, maybe even nut and bean flours.

Thanks!

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I use EnerG brand Tapioca flour and EnerG Potato flour too. They have the worst bread in the world but their flours are fine.

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Ener-g has potato and tapioca starches that are made in a dedicated facility without oats.

http://www.ener-g.com/

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I buy my rice flour and tapioca starch in the oriental section at my store. 89 cents for a two lb bag!!! I bet you could find a good deal at an asian grocery store if there is one near you.

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Yoki is a good brand for the tapioca starch. www.yoki.com

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Manischewitz brand for potato starch. They has a great recipe for a potato starch sponge cake.

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As a super sensitive I buy things whole, sort, wash, dry, and grind. I haven't found a good tapioca source though.

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I also use Ener-G. I'm not sensitive to oats, so I use BRM with no problems. But I use Ener-G's potato and tapioca starch often. I am pretty sensitive to gluten and have never had an issue with it.

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I'm in the same boat with Steph, where I have to buy things whole grain and grind them myself.

Nuts I get at anuts.com, but these are unshelled, so they take a bit of work to make into a flour-like consistency. I haven't bothered yet, honestly!

Beans, including chickpeas that I know are often used as a flour in Indian cuisine, I get from rancho gordo, also an online ordering place. I wash these with soap and water, though, multiple times, before using.

Tapioca you could make yourself if you can find some cassava root at the store, as this is the source for tapioca flour. However, if you are planning to use a lot of starch, you might not want to use the tapioca. Cassava has to be processed before it is edible, to rid it of certain toxins. However, even with processing, some toxins still remain that can affect our thyroid, specifically. If we use it periodically, it's okay, but I've read that in areas of the world where it is a staple food, there are very high levels of thyroid problems, goiter, etc...

Considering how many celiacs have issues with the thyroid, it might be worth some extra caution when dealing with tapioca, ya know?

If you wish to make potato or sweet potato starch from scratch, I just found a good looking way to do that today, actually! I haven't tried it, but it seems fairly straightforward.

Here's a link: http://homeschoolblogger.com/armoorefam/47426/

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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