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Thought I Would Ask Here If Anyone Reacts To Gluten Free Foods?

answerseeker

By answerseeker
in Super Sensitive People

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answerseeker Enthusiast
answerseeker
Posted

I seem to be the only one that has reacted to gluten free foods from the other forums, so maybe I'm in the sensitive category. I had a pretty bad reaction to a gluten-free cookie mix and also a minor reaction to French toast I made with Udis bread. I thought it was the syrup but now im thinking it was the bread itself. Got some gurgling from Glutino crackers as well. Could I be sensitive to even gluten free grains? I feel like I'm going crazy here!

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notme Experienced
notme
Posted

oops - i put my reply in your other thread about this......

 

i have a secondary sensitivity to soy <mimics a gluten reaction but not as severe and doesn't last long)  i probably wouldn't eat these (especially if i was pretty new and still not healed much yet) because of the chocolate chips.  even now, i only eat a tiny bit of chocolate at a time if it contains soy.  i'm hoping to 'outgrow' the soy thing because it's hard to avoid - i started making my own salad dressings because it used to take me an hour in the store to find one without soybean oil.  dah.  and regular vegetable oil?  soybean oil.  did not occur to me and it drove me nuts trying to figure out what was 'glutening' me.  switched to canola, viola!  

 

it's all little adjustments figuring out what works for *you*   :)

kareng Grand Master
kareng
Posted

It is a bit confusing because you keep asking the same question in 3 or 4 different places.

I think I said before that you might be sensitive to an ingredient? Maybe your baking tools ( sheets, etc) had left- over gluten, etc.

If you think you are a " super sensitive" you want to stop eating any of these processed foods. Perhaps even eat only foods you can grow yourself or thoroughly source where they are grown, processed, etc. But certainly, eat only the most minimally processed foods you can get and wash them thoroughly.

answerseeker Enthusiast
answerseeker
Posted
  • Author

I thought it would be ok to post in a different forum, I've seen others ask the same questions in a different forum.

Starting to feel a bit unwelcomed. I already received a private message about my postings. Just trying to get some help. The Drs sure don't help much so I thought maybe here I could ask questions. I'll just read the books I'm waiting for in the mail :-/

dilettantesteph Collaborator
dilettantesteph
Posted

Hi.  Some celiacs react to levels lower than the allowed 20 ppm in gluten-free foods.  In the main study used to say that that level is safe: Open Original Shared Link  

"One patient (challenged with 10 mg gluten) developed a clinical relapse"

 

Clearly, that level is not safe for all.  I am one of those who cannot tolerate many of those gluten-free processed foods.  It is not a problem with gluten-free grains in my case because if I source them carefully, I can tolerate them fine.  It is a problem of being sensitive to lower levels of gluten than typical.

 

Another study found that some recovered on a diet of unprocessed meat and produce: Open Original Shared Link

 

It could also be another ingredient as mentioned in other responses.

 

Keeping a food/symptom journal is helpful to determine what foods are causing problems.  There can be a delay between eating the food and getting the symptom of a few hours to a few days.  Keep track of sources of food as well as ingredients.

 

I am sorry that you are feeling unwelcomed.  If you are like me, getting glutened can make you grumpy and over sensitive and maybe the treatment you have been getting isn't that bad after all.  I haven't read those threads yet.  I hope that you feel better soon.

answerseeker Enthusiast
answerseeker
Posted
  • Author

Thank you so much for the kind response, it was mainly the private message. That makes sense what you posted.

Thanks again

greenbeanie Enthusiast
greenbeanie
Posted

My daughter has had three very clear reactions to "gluten-free" foods: Trader Joe's chicken soup stock, Trader Joe's brownie mix, and Rice Dream rice milk. The Trader Joe's products were both produced in shared facilities with wheat, so we learned our lesson about that early on. I also had rash flare-ups after those same two products. Her reaction to Rice Dream was also very definite - tummy ache within minutes, then grumpiness and diarrhea a while later. She is fine with other rice products and with other soups and baked goods from dedicated facilities, so I'm pretty sure these were really gluten reactions. I read somewhere (sorry, forgot the source) that Rice Dream is tested to contain less than 5ppm, so if that's true then my daughter is sensitive to minuscule levels. So yes, it's possible! She was only diagnosed two months ago, though, so I'm hoping she might become less sensitive in time.

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answerseeker Enthusiast
answerseeker
Posted
  • Author

I've been using that brand rice milk with my gluten-free chex ceral, almost every morning. hmmm

I was only diagnosed a little over a month ago also. and was just hospitalized for a severe asthma attack a week before diagnosis which my Dr is now contributing to gluten being the trigger. Just to give a little background

notme Experienced
notme
Posted

take heart - yes, keep a food journal.  it's super helpful to identify 'suspect' foods/ingredients.  another thing i forgot to mention:  some things just don't agree with me.  no gluten, just certain brands, for no specific reason.  choose things with the least amounts of ingredients.  even non-wheat containing distilled vinegar will sometimes cause my guts to go all wonky.  you may have to try some different brands until you find one that 'agrees' with you.  you are still very early on, so i'm sure you could stand to heal a little and then maybe re-introduce some things.  food journal is your friend :)  

T.H. Community Regular
T.H.
Posted

When my celiac daughter eats foods that are processed in facilities that process wheat or that are not tested to be <10 ppm, she has trouble too. We have not found any other correlation between these foods she reacts to aside from the above. I don't do well with gluten-free processed foods, either.

 

As for your question about whether you could be sensitive to even gluten free grains? That, too, is possible. There is something called avenin sensitive enteropathy which is when one reacts to oats. gluten-free foods that are processed in a facility that processes gluten-free oats can be contaminated with avenin. So someone with ASE has to avoid contamination by both gluten AND avenin. CSA certified gluten free foods have to be free from both gluten and oat contamination, so they can be a good choice if this is a problem.

 

There was also an interesting study that found a problem not with all quinoa, but with a few varieties of quinoa.

Open Original Shared Link

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

here's a thread that I started on Rice Dream.  It did not work for me...

 

https://www.celiac.com/forums/topic/102693-didnt-see-that-one-coming-rice-dream/

  • 4 weeks later...
ruskintl Newbie
ruskintl
Posted

You might find this useful:   Open Original Shared Link

I am super sensitive and have found many certified gluten-free foods cause a reaction.  My doctor told me to cut out all manufactured food until I am healed.  It sucks but I want to heal quickly.  Only fresh meat, fish, fruits and vegetables that I cook myself.  No restaurants, no friends or relatives cooking for me, and nothing from a package!  Once you are healed you may be able to eat some packaged foods in moderation, but apparently some people never reach that point.  

  • 5 weeks later...
NoGrainNoPain Newbie
NoGrainNoPain
Posted

If you do a search on how much gluten can make you sick, you will be floored at how sensitive we all really are. From what I've read, before your gut has healed even "gluten free" grains will make you sick. Why? Because wheat is everywhere. Crops are rotated on the same field, transported in the same bins, stored and proceesed and packaged in the same facility. Some studies have found that soy is cross contaminated with wheat up to 3,000 PPM (Anderson 2012). Gluten free products must come in under 20 PPM to have the "gluten free" label.

 

[The FDA] found that for the most sensitive people, intestinal damage begins at 0.4 milligrams of gluten per day (1/200th of a teaspoon of flour or 1/8,750th of that slice of bread), while symptoms begin at 0.015 milligrams of gluten per day (less than 1/500th of a teaspoon of flour or 1/233,333th of that slice of bread). The agency based those conclusions on various studies, including two case studies involving recurrent symptoms in people who consumed communion wafers once each week. (Anderson, 2013)

 

After your gut has healed, you could probably handle "gluten free" grains...maybe. I'm not an expert (but I do have a Bachelors in Nutritional Science) and I'm just figuring all this out in the past couple of months on my own...the hard way, but I've also spent a lot of time reading online. As of right now, I have non celiac gluten sensitivity, I'm just a couple of months into the gluten-free diet, and I cannot eat "gluten free" grains.

 

Open Original Shared Link

 

Open Original Shared Link

 

  • 3 weeks later...
Yojimbo Newbie
Yojimbo
Posted

If you do a search on how much gluten can make you sick, you will be floored at how sensitive we all really are. From what I've read, before your gut has healed even "gluten free" grains will make you sick. Why? Because wheat is everywhere. Crops are rotated on the same field, transported in the same bins, stored and proceesed and packaged in the same facility. Some studies have found that soy is cross contaminated with wheat up to 3,000 PPM (Anderson 2012). Gluten free products must come in under 20 PPM to have the "gluten free" label.

 

[The FDA] found that for the most sensitive people, intestinal damage begins at 0.4 milligrams of gluten per day (1/200th of a teaspoon of flour or 1/8,750th of that slice of bread), while symptoms begin at 0.015 milligrams of gluten per day (less than 1/500th of a teaspoon of flour or 1/233,333th of that slice of bread). The agency based those conclusions on various studies, including two case studies involving recurrent symptoms in people who consumed communion wafers once each week. (Anderson, 2013)

 

After your gut has healed, you could probably handle "gluten free" grains...maybe. I'm not an expert (but I do have a Bachelors in Nutritional Science) and I'm just figuring all this out in the past couple of months on my own...the hard way, but I've also spent a lot of time reading online. As of right now, I have non celiac gluten sensitivity, I'm just a couple of months into the gluten-free diet, and I cannot eat "gluten free" grains.

 

Open Original Shared Link

 

Open Original Shared Link

Hi Super-Sensitives!  I'm just jumping in here to add my experience too. 

 

I like the above comment from NoGrainNoPain very much.  I am a super-sensitive Celiac and have been gluten-free for over 4 years now.  I also cannot tolerate a lot of the gluten-free products out there like Udi's, Glutino, etc.  Most of the "safer" gluten-free brands that I've tried (meaning that they do not use shared equipment or will keep their gluten-free products in a different building) will still use gluten-free oats, which I react to. 

 

I spent three years trying to make gluten-free grains work for me and I've just given up.  The cross-contamination issue and the fact that I find myself reacting to less than 5ppm is just too much.  So I've gone to a Paleo diet and it works great for me!  Nothing but meats, fats, vegetables, and (cooked) fruits -- everything I cook for myself.

 

So in answer to your question, yes, you are not alone.  If it's labeled gluten-free, but you find you don't like it in any way, trust your instincts and don't eat it again.  Your body will thank you.

  • 3 weeks later...
micheled Newbie
micheled
Posted

Hi-It is so nice to find this forum and know we are not the only ones.  We've had to go gluten free since July 2013.  After much reading I discovered migraines and my sons short stature was caused by gluten (though no doctor figured out the link).  We are still trying to figure out what is safe.  We reacted to King Arthur flour but seem to be okay with other King Arthur items.  Is it possible to have a reaction without feeling it completely?  Seem to be good with Glutinos and Udi-yeah!  Glad we have some choices.  We definitely have to stay away from Corn.  You know how much corn and wheat are in almost everything.  

 

If anyone has a great recipe or link, please send.  We are a bit picky eating our vegs but are thankful I figured out the main issue of our health problems.

GFinDC Veteran
GFinDC
Posted

Hi-It is so nice to find this forum and know we are not the only ones.  We've had to go gluten free since July 2013.  After much reading I discovered migraines and my sons short stature was caused by gluten (though no doctor figured out the link).  We are still trying to figure out what is safe.  We reacted to King Arthur flour but seem to be okay with other King Arthur items.  Is it possible to have a reaction without feeling it completely?  Seem to be good with Glutinos and Udi-yeah!  Glad we have some choices.  We definitely have to stay away from Corn.  You know how much corn and wheat are in almost everything.  

 

If anyone has a great recipe or link, please send.  We are a bit picky eating our vegs but are thankful I figured out the main issue of our health problems.

Hi Michael,

 

How about a whole forum section full of recipes? :)

 

https://www.celiac.com/forums/forum/27-gluten-free-recipes-baking-cooking-tips/

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