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
      132,018
    • Most Online (within 30 mins)
      7,748

    Laney71
    Newest Member
    Laney71
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
×
×
  • 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.