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Reacted To Something Labeled "gluten Free"
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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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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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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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I believe inulin is derived from chicory root.

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

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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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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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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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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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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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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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