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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.

Need Help Finding Safe Brands
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18 posts in this topic

Hi everyone well I have been gluten free now for over three years. I can not eat what many others can. Chex Glutino pretzels etc. etc. etc. now whether it is the amount of gluten or preservatives I have no idea, I also eat no dairy. I have decided it is time for me to start baking and making as much of my things as possible.

What I would like to know and get your thoughts on are, what flours have you all used that you had no reactions to from cross contamination? Rice flours, potato flours etc. What brand did you buy where did you buy it at etc. I live in a small community so I may have to order online, or drive about 85 miles to a bigger town, which is ok.  I just need to know brands that people seem to have good luck with eating, also am looking for good bread and muffin recipes.

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This post might help you: http://celiacdisease.about.com/od/glutenfreefoodshoppin1/tp/Gluten-Free-Bread-Brands.htm

She says that Glutino tests to make sure that their products test to under 20 ppm.  That doesn't mean that they contain that amount of gluten.  They could contain none, but they could contain under that amount.  Some of the other companies test to lower levels.  To start, I would try some of those products to see if you can tolerate them.  If not, then you may have problems with flours as well from companies like that.  An option is to buy whole grains, sort them to remove any grains that don't belong, and grind them into flour yourself.  You could also wash them to remove any possible residue that might be present from any contaminating grains that you might find.

 

Another option is to stick with produce, unprocessed meats and rice.  Maybe small amounts of baked goods from companies that test to 5 ppm would work out.  I hope you find some good options.

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This post might help you: http://www.celiac.com/gluten-free/topic/103927-need-help-finding-safe-brands/

She says that Glutino tests to make sure that their products test to under 20 ppm.  That doesn't mean that they contain that amount of gluten.  They could contain none, but they could contain under that amount.  Some of the other companies test to lower levels.  To start, I would try some of those products to see if you can tolerate them.  If not, then you may have problems with flours as well from companies like that.  An option is to buy whole grains, sort them to remove any grains that don't belong, and grind them into flour yourself.  You could also wash them to remove any possible residue that might be present from any contaminating grains that you might find.

 

Another option is to stick with produce, unprocessed meats and rice.  Maybe small amounts of baked goods from companies that test to 5 ppm would work out.  I hope you find some good options.

Hey, Steph! I think your link didn't work? :)

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if your bigger town has an Indian community, they use  chickpea flour called channa bessan and  split pea flour  Dal. These have never given me any problems. Sometimes you can find millet flour too.  Google Bobs Redmill to see the gluten free flours they have too. -- I can't do dairy either and use coconut milk or almond milk. Good luck

Hi everyone well I have been gluten free now for over three years. I can not eat what many others can. Chex Glutino pretzels etc. etc. etc. now whether it is the amount of gluten or preservatives I have no idea, I also eat no dairy. I have decided it is time for me to start baking and making as much of my things as possible.

What I would like to know and get your thoughts on are, what flours have you all used that you had no reactions to from cross contamination? Rice flours, potato flours etc. What brand did you buy where did you buy it at etc. I live in a small community so I may have to order online, or drive about 85 miles to a bigger town, which is ok.  I just need to know brands that people seem to have good luck with eating, also am looking for good bread and muffin recipes.

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What I would like to know and get your thoughts on are, what flours have you all used that you had no reactions to from cross contamination? Rice flours, potato flours etc. What brand did you buy where did you buy it at etc. I live in a small community so I may have to order online

 

 

 

Like Ken, I am a big fan of coconut milk. 

 

I get many things from nuts.com. 

 

Never had a single problem from anything that comes from their G F section.

 

for oats, I use 

 

http://www.glutenfreeoats.com/

 

 

 

Also, my friend who owns a G F bakery sources her  starches and flours from Thailand. No problems.

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Thanks Kareng!  I fixed it.

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I cannot eat processed gluten free products either. For some reason Glutino is the worst for me even though they are safe. Must be something in it. Anyway I can tolerate Pamela's mixes and Enjoy Life cookies. Once in a while I make a pizza with Pamela's and don't have any problems with it. It is listed as less than 5ppm so it is on the lower side.

I think Pamela's has a muffin mix too

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You could also try just eating less of the processed item.  The ppm is a concentration, and when they talk about amount that initiates a gluten reaction, they talk about amount per day.  It is thought to be dose dependent.

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Oh good to know. I was having some issues the other day. I ate a gluten-free cereal bar, 2 gluten-free cookies with my tea, and a gluten-free bun with my bratwurst for dinner lol. No wonder

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Thanks all, does anyone use a certain brand of rice flour or potato flour  ?

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As I mentioned, I use nuts.com  Gluten free flours 

 

http://www.nuts.com/cookingbaking/gluten-free-flour/

 

I have also used Bob's Red Mill and Authentic Foods flours without a problem.

 

For some reason I can not connect to this site, I am getting a "failure to connect"  I am having no problems with any other site so maybe  they are having problems.

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For some reason I can not connect to this site, I am getting a "failure to connect"  I am having no problems with any other site so maybe  they are having problems.

 

hmmmm.. :unsure:  I do not know why, hon.,...I just clicked on it and it connected just fine.

 

Maybe something with your computer?

 

try typing in  www.nuts.com?

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The links Works for me

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wow its letting me in now (nuts.com)  thank you what a great variety!  Am going to give some a try and try my hand at baking gluten-free.

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wow its letting me in now (nuts.com)  thank you what a great variety!  Am going to give some a try and try my hand at baking gluten-free.

 

 

The shipping is a bit steep, but they send you a free treat, and it arrives super fast. I can honestly say I have never had a bad thing from them.

They take G F seriously and everything is super-fresh. My hubs loves the dates. I get the coconut flakes, too.

One whole shelf in my pantry is nuts, seeds, coconut, cacao powder and dried fruits from them and another is flours, starches, etc.. 

Good luck with baking!

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Irish mentioned Bobs, so I'll mention that I think that I have problems with them, and I think it is because I am sensitive to oats.  Last I knew, they process their gluten-free oats in the facility with the other gluten-free stuff.

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Thanks dilettantesteph  its good to get all opinions, I know each of us handle things differently.

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    • Weird Reaction
      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
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      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
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