Still Feeling Sick

[Maria B.]

  On 6/10/2014 at 1:24 PM, dilettantesteph said:

Soy can be contaminated with gluten.  Open Original Shared Link

That doesn't mean that all soy is contaminated or that celiacs shouldn't eat soy.

There is still a lot of unknowns with celiac disease and a lot of speculation online and in the offices of various health professionals.  You need to look carefully at the source of your information.  You need to see if there is any scientific evidence behind what someone is proposing.  It is easy to make mistakes when you look at what might have made you sick in a day's food consumption.

All the speculation makes navigating this condition more difficult. 

I agree....It's very overwhelming! 

[IrishHeart]

  On 6/11/2014 at 11:53 AM, Maria B. said:

I didn't think about it, but Yes....I will try eating a soy bean on its own to see my reaction.  Thanks for the info, I've never used a Forum or Blog before, so reading everyone's post can become very overwhelming.  Some people seem as though they know what they're talking about, but then you get a response from someone else saying"No..thats not right". 

 

I know exactly what you mean. When I first came on here 3.5 years ago, i was not sure who to listen to or what to trust. Forums can be tricky and everyone has an "opinion" 

Plus, when you are new at this, it is overwhelming and it seems like EVERYTHING is making you feel sick.

I quickly learned who was giving me good info and who was a fear-monger. You'll catch on! 

 

I suggest this:

Read current threads.

Look at someone's profile and see if they are still active and if they have a number of active posts,

Watch if they direct you to celiac research centers or offer sound advice, and if, in general what they say makes sense.

Blogs are not always full of sound advice, trust me. 

"I heard that" is not a valid source of information.

 

I suggest you read this book: Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler. 

Good luck on your soybean trial. 

[Maria B.]

  On 6/10/2014 at 12:54 PM, IrishHeart said:

Maria,

 

You mentioned that 

" Yesterday I had gluten-free protein bar and started feeling sick to my stomach almost immediately, when I read the label it said it contained soy."

 

Soy may very well be causing you some symptoms or it is any number of other ingredients in a packaged product. The only way to tell is to just eat

soy--all by itself. Eat a big hunk of tofu or some soybeans. PLAIN...and see what happens.

 

As for this claim:

 

It contains prolamine which your liver will think is gluten because it's extremely similar. You may have heard you can't have CASEIN (a protein in cow's milk) and that is for the same reason - there is prolamine in it and that is probably because the cows are fed soy. Manufactuers will soon be required to remove "gluten free" from the label if the product contains soy! Please, please, from a celiac, take me seriously and remove soy from your diet. Soy LECITHIN is ok, that's just an emulsifier.

 

 

well, I did a quick search on here and that statement came from someone who was quoting her "PhD' doctor --i.e. her psychologist perhaps--

and the thread is a giant train wreck of speculation and misinformation from 2007--which is why it was locked down. Hardly any of those people are even contributing members anymore.

 

That poster gave other nuggets of misinformation like this one:

 

 my doctor misunderstood my question and the soy thing only applies to a specific gene of celiac (i think mine is 0305)

 

 

There is no "0305 celiac gene" and there aren't any specific food lists for 'celiac genes" anyway. She claims the doctor said certain celiacs will react to soy like it is gluten because of the "gene they carry". Hogwash.

 

I can assure you, this is absolutely unverified nonsense and wild speculation. ( some of us long time members  would like to see threads like this one you are quoting from deleted permanently)

 

 

https://www.celiac.com/forums/topic/28935-please-read-no-celiacs-can-have-soy/page-7

 

If you want valid information read Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.

 

This is a public forum and we have all seen some pretty wild stuff posted here. We try to make sure new people get valid information. You will have to choose wisely when reading things, okay?

 

Best wishes to you. 

Thanks! 

[dilettantesteph]

  On 6/11/2014 at 12:15 PM, IrishHeart said:

 

Plus, when you are new at this, it is overwhelming and it seems like EVERYTHING is making you feel sick.

 

That's the big problem.  Additionally, some are more sensitive than others.  When someone says how safe something is for them, it might not be for you.  The unknowns make it really easy develop misunderstandings.  It will take some time, but you will get there.  Remember to reassess your understanding as time goes on.  After you have healed you may find that you can eat things that you thought you couldn't.