Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Reacted To Something Labeled "gluten Free"


ssryan

Recommended Posts

ssryan Newbie

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



sreese68 Enthusiast

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.

psawyer Proficient

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.

Roda Rising Star

I believe inulin is derived from chicory root.

dilettantesteph Collaborator

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

ElseB Contributor

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

padma Newbie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



T.H. Community Regular

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. :-)

dws Contributor

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.

dilettantesteph Collaborator

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. Open Original Shared Link

dws Contributor

I'm not quite sure what you mean by that. Improper processing of cassava can cause acute cyanide intoxication. Be careful. Open Original Shared Link

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,696
    • Most Online (within 30 mins)
      7,748

    Jades Journey
    Newest Member
    Jades Journey
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • RDLiberty
      So, I've been using a gluten free labeled toothpaste since being diagnosed with celiac. No big deal, the toothpaste seems to work. Question is, I just realized it contains hydrated silica.  Now, I've heard that silicon dioxide can cause issues in some people with celiac (was that ever confirmed though?), so to be safe, I cut it out of my diet entirely. But, as I understand it, hydrated silica is related to silicon dioxide. Is that something to worry about, or is the hydrated form not known to cause issues like the silicon dioxide form?  I've never seen it in food, but nearly every toothpaste I look at contains hydrated silica?  Issue or not?  Any scientific research (Not opinion pieces, not health bloggers, you get my gist), but actual science, that says it's an issue? I have a hard time believing 99% of what I read on random internet searches.    Thanks so much, Renee. 
    • Gigi2025
      Since 2015 we've spent extensive time in Italy and I've been able to eat their wheat products without incident. Initially, I was practically starving thinking foods in Sicily were not gluten-free.  An Italian friend who had lived in the US for over 20 years said she had celiac/gluten-free friends from the US who could eat Italian wheat products without problems. Hesitantly, I tried little by little without issues.  A few years later at a market, I asked a bread vendor if they had gluten-free loaves. Turns out she had lived in LA, said groups believe it's not the gluten that's causing our bodies harm, but potassium bromate; these groups have been trying to ban it.  Bromines and other halogens wreaks havoc to our endocrine system and, more specifically, our thyroids and immune systems. When bromines are ingested/absorbed into the body, it displaces iodine causing other health issues. Potassium bromate is a powerful oxidizing agent (dough 'conditioner') that chemically changes flour to enhance elasticity, bleaches the dough, and ages the flour much faster than open air.   Shortly thereafter while visiting friends in California, one family said they had gone gluten-free and the difference was incredible. The reason they choose this path was due them (a biologist/chemist/agriculturist scientist) having to write a portion of a paper about a certain product for the company he worked. Another company's scientist was directed to write the other portion. All was confidential, they weren't allowed to know the other company/employee.  After the research, they learned gluten was being removed from wheat, sent elsewhere, returned in large congealed blocks resembling tofu, and then added to wheat products. Potassium bromate has been banned for use in Europe, China, and other countries, but not in the US. Then we have the issues of shelf preservatives and stabilizers. What are we eating?  Why? We spend long periods of time in Italy and all has been good.  We just returned from an extended time in Greece;  no issues there either.  There is a man there we learned about on a travel show about Greece who walks the hills, picking herbs, pods, etc.  He is a very learned scholar, taught at the university level in Melbourne. It took a few days to locate him, but were finally successful. He too, is concerned about the additives and preservatives in American food (many of his customers are Americans, haven't been in the best of health, and have become healthier after visiting him). He suggested taking a food product from the US and the same product in Europe, and compare the different ingredients. Then ask why these things are being allowed in the US by the 'watch dog' of our foods and drugs. It would be amuzing if it weren't tragic. I'm presently looking for flour from Europe that I can make my own bread and pasta as the gluten-free bread is now $7.99 a (small) loaf.  BTW, studies are showing that many gluten-free individuals are becoming diabetic. My guess is because the gluten-free products are high in carbs. This is only my experience and opinion garnished by my personal research.  I hope it helps.  
    • knitty kitty
      Symptoms that get worse if you don't supplement is a sign of malabsorption, possibly due to Celiac disease. Blood tests for nutritional deficiencies are not very accurate, and should be done when you have been off of supplements for eight to twelve weeks, otherwise the vitamin supplements you've taken will be measured.  The blood circulation system is a transportation system.  It transports the vitamins you've absorbed around the body, but blood tests don't give an accurate picture of the vitamin and mineral stores inside organs and tissues where they are actually used.  You can have "normal" blood levels but still have deficiencies.  This is because the brain demands stored nutrients be put into the blood stream to supply important organs, like the brain and heart, while other organs do without.   If you are taking Thiamine Mononitrate in your supplements, you are probably low in thiamine.  Thiamine Mononitrate is used in many supplements because it won't break down sitting on a shelf.  This also means Thiamine Mononitrate is difficult for the body to utilize.  Only thirty percent of Thiamine Mononitrate on the label is absorbed and even less is able to be utilized by the body.  A different form of Thiamine called Benfotiamine has been shown to promote intestinal healing.   Talk to your doctor about doing a genetic test to look for Celiac markers.   I'm concerned that if you do a gluten challenge (10 grams of gluten per day for a minimum off two weeks) in your weakened state, the nutritional deficiencies will become worse and possibly life threatening.  
    • ElisaAllergiesgluten
      Hello, good afternoon!   I apologize, I didn’t see a notification and I’m just reading this. Thank you so much for sharing your thoughts and the link. Yes you are absolutely right, even so trying to get a response from them has been extremely difficult. They don’t answer but I will your practice of “guilty until proven innocent.”   I like and have a sense of trust here in this website, everyone is honest and thoughts are raw. The mutual understanding is amazing!   thank you Scott!
    • Scott Adams
      I'd go with a vodka tonic, but that's just me😉
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.