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Reacted To Something Labeled "gluten Free"


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10 replies to this topic

#1 ssryan

 
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Posted 09 August 2011 - 01:28 PM

I have been gluten free for more than a year. After more than 20 years of IBS diagnosis and symptoms, going gluten free has been a blessing. I have been demoralized more than once when I thought I had been doing everything right only to be "glutened" by hidden gluten, but the overall improvement in my health has made those setbacks learning experiences.

For the last 24 hours I have eaten only food that I prepared and have had before without reaction. For dessert today I had Kozy Shack tapioca pudding, which I don't recall having eaten in the last year (straight from the container using a plastic spoon from a box I had just opened). The pudding is clearly labeled "gluten free," and I understand the product to have a great reputation for being gluten free.

You probably saw this coming, but I was knocked out with symptoms. The pain was akin to childbirth. I won't go into the details of my symptoms because you all know. So here's my question, have any of you had a reaction to tapioca? There is an ingredient in it called "inulin" that adds fiber. It appears to be gluten free, but I don't know if I could have sensitivity to that or not. Any ideas?
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#2 sreese68

 
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Posted 09 August 2011 - 05:55 PM

Sorry you had such a hard time!! Been there, done that with the stomach pain! Inulin can cause problems for some people, so that is a possibility.
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Sharon
gluten-free March 2011
Failed gluten challenge May 2011
Diagnosed celiac 5/25/11

#3 psawyer

 
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Posted 09 August 2011 - 06:40 PM

You could have a sensitivity to tapioca. If you determine that you do, watch out for "modified food starch." It is on many celiac avoid lists due to a false fear that it could be wheat. It is, however, most often tapioca, with corn as the second most likely source.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#4 Roda

 
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Posted 10 August 2011 - 04:15 AM

I believe inulin is derived from chicory root.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#5 dilettantesteph

 
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Posted 10 August 2011 - 08:56 AM

I react to many items which are labelled gluten free. Some are better than others. I keep track with a food diary.
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#6 ElseB

 
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Posted 10 August 2011 - 10:35 AM

It is also entirely possible that the product was contaminated with gluten.
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#7 padma

 
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Posted 10 August 2011 - 03:47 PM

I have been gluten free for more than a year. After more than 20 years of IBS diagnosis and symptoms, going gluten free has been a blessing. I have been demoralized more than once when I thought I had been doing everything right only to be "glutened" by hidden gluten, but the overall improvement in my health has made those setbacks learning experiences.

For the last 24 hours I have eaten only food that I prepared and have had before without reaction. For dessert today I had Kozy Shack tapioca pudding, which I don't recall having eaten in the last year (straight from the container using a plastic spoon from a box I had just opened). The pudding is clearly labeled "gluten free," and I understand the product to have a great reputation for being gluten free.

You probably saw this coming, but I was knocked out with symptoms. The pain was akin to childbirth. I won't go into the details of my symptoms because you all know. So here's my question, have any of you had a reaction to tapioca? There is an ingredient in it called "inulin" that adds fiber. It appears to be gluten free, but I don't know if I could have sensitivity to that or not. Any ideas?


I am a hyper sensitive celiac and have found that many premade foods that are "gluten free" are not. Since being in this group I am learning enough to be mostly symptom free, but all of the times I have reacted is to something packaged. I think it might be that they are made in factories that are not dedicated or that the food is shipped and stored in close proximity with gluten foods and cc.
Sorry you got glutened. Hope it passes shortly. I take anti-inflammatory foods and acidophilus to reduce the time to heal.
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#8 T.H.

 
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Posted 11 August 2011 - 07:30 AM

Re: symptoms.

Inulin has a reputation for causing gastro problems for people, so it could definitely be that. Maybe find a few other foods with inulin that don't have similar ingredients otherwise to test that out.

Might be good to call up the company and see how they ensure their food is gluten free, and some of the manufacturing practices. If they test every batch for gluten, it's a good bet that it's below a certain level. If they don't test every batch, then there's a low risk that they could get a contaminated batch if it's a gluten-free facility, a slightly higher risk if they have a shared facility but a gluten-free line, and a higher risk if they don't have a gluten-free facility or a gluten-free equipment line, you know?

Could be either issue, potentially....or a double whammy and you get both contamination and inulin.

Where is our 'what got me' test when we need it! ;)

Oh, and as Richard said, I believe, some people have issues with tapioca, as well, so there's that to check out, too. Although if you eat a lot of gluten-free products, you've probably run into tapioca before, so I'd think that might be less likely unless you DON'T eat a lot of gluten-free processed foods. :-)
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#9 dws

 
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Posted 13 August 2011 - 09:11 AM

I have been gluten free for more than a year. After more than 20 years of IBS diagnosis and symptoms, going gluten free has been a blessing. I have been demoralized more than once when I thought I had been doing everything right only to be "glutened" by hidden gluten, but the overall improvement in my health has made those setbacks learning experiences.

For the last 24 hours I have eaten only food that I prepared and have had before without reaction. For dessert today I had Kozy Shack tapioca pudding, which I don't recall having eaten in the last year (straight from the container using a plastic spoon from a box I had just opened). The pudding is clearly labeled "gluten free," and I understand the product to have a great reputation for being gluten free.

You probably saw this coming, but I was knocked out with symptoms. The pain was akin to childbirth. I won't go into the details of my symptoms because you all know. So here's my question, have any of you had a reaction to tapioca? There is an ingredient in it called "inulin" that adds fiber. It appears to be gluten free, but I don't know if I could have sensitivity to that or not. Any ideas?

You may be becoming more sensitive as time goes by. I do not know if this happens as we get older or if it happens because of our gluten free diet. I went through a honeymoon period when I could cheat a lot. That lasted about a year and a half and after that I started having problems again and had to tighten up my diet. Now, I even avoid processed gluten free foods as much as I can. I have suspected tapioca from time to time. I have trouble with Namaste mixes even though they are supposed to be pretty good. I tried non-processed cassava (the root they make tapioca from) and had a lot of pain on those days, though not necessarily diarrhea. I am not conclusive about the tapioca, but the problems have happened a couple of times. When I work up my nerve, I might try again. Three strikes and it's out. Good luck in your journey. Sometimes it takes a while to figure these things out. I have gotten sidetracked a few times and started avoiding things that really are not a problem. It's all part of the learning process. Sometimes I get real down, but I have to keep reminding myself to keep a positive attitude.
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#10 dilettantesteph

 
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Posted 13 August 2011 - 04:46 PM

I tried non-processed cassava (the root they make tapioca from) and had a lot of pain on those days, though not necessarily diarrhea.

I'm not quite sure what you mean by that. Improper processing of cassava can cause acute cyanide intoxication. Be careful. http://en.wikipedia.org/wiki/Cassava
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#11 dws

 
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Posted 14 August 2011 - 07:44 AM

I'm not quite sure what you mean by that. Improper processing of cassava can cause acute cyanide intoxication. Be careful. http://en.wikipedia.org/wiki/Cassava

Thanks for the heads up! I had read about the dangers of the bitter variety, but it appears you have to do some soaking, etc. even with the sweeter variety. It does have an unusual odor. Maybe this explains why some people need to stay away from it. I started with some frozen cassava chunks from the grocery store. The directions said to boil it for 30 mins. Maybe it was presoaked. I had been doing the same with whole cassava after I peeled it. Might need to soak it 1st. Probably not worth using it if it can cause harm if mishandled. Life is already tough enough.
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