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
      131,882
    • Most Online (within 30 mins)
      7,748

    Nicole King
    Newest Member
    Nicole King
    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

    • Florence Lillian
      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
×
×
  • 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.