Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Gluten Free Wheat Starch

thefreespirit

Recommended Posts

thefreespirit Rookie
thefreespirit
Posted

Hi all

Result! I have my diagnosis. My specialist has labelled me as Non-antigen Coeliac, which I have translated to *we have not proved your diagnosis scientifically, but you have responded so well to the treatment that we actually believe you. This journey has taken me twenty odd years, I might add, so its a real result for me! I'm sure some of you trod the same path. I now have access to prescription only foods, so I am trying some new stuff. Which leads to my question.

Have any of you had a reaction to Gluten Free Wheat Starch? I recieved a sample box from the supplier Juvela. Wonderful service BTW, their response was almost instantaneous! I tried a pizza base on the weekend, no full on reaction, but I did have bad indigestion afterwards. I put this down to the cheese and moved on. Monday night I had a very small portion of the pasta spirals, with my own topping. By Tuesday I was having a reaction. I had the old pain under my rib cage, which I haven't had for months. There was a small amount of bloating, nothing major but enough to make me notice. Also my C reaction was back! This was definitely not a full on reaction as of old, but it made me think. It wasn't until I was reading all the nutrition labels on the boxes that I realised the first ingredient was Gluten Free Wheat Starch, which I had not come across before in my non-prescription supermarket purchases.

I would be really interested to know if any of you recognise this symptom and whether some of you are intolerant to the wheat itself.

Thanks so much.

TheFreeSpirit xx

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

Celiac.com Sponsor (A8-M):


BabsV Enthusiast
BabsV
Posted

I'm in Poland and there are many products that include this ingredient - I tried one by accident (I was new to the diet and trying different products from the big Polish gluten free company -- it turned out to be a good way to learn the lesson to read labels closely, EVERY TIME!) and had a full-on reaction.

If I remember properly, in the EU following the rules of the Codex Alimentarius, this starch can be labelled 'gluten free' if the food measures in at less than 20ppm gluten.

I read somewhere that it is used to improve the "quality and texture" of gluten free products.

I avoid any and all products that include it!

navigator Apprentice
navigator
Posted

I tend to stick to the Glutafin products on my prescriptions (prescriptions in Scotland are limited to Juvela and Glutafin, I assume same for all UK). The Glutafin products came in both Gluten Free and Gluten Free/Wheat Free versions. The Gluten Free ones contain gluten free wheat starch. Given your reaction, I would stick to gluten and wheat free versions. Although I tested negative for wheat allergy, I decided to play safe and stick to gluen/wheat free versions.

thefreespirit Rookie
thefreespirit
Posted
  • Author

Thank you both for your responses. I am pretty certain now that it was the codex wheat starch. I have spoken to both Juvela and Glutafin who are both sending me Gluten free, Wheat free samples. Lesson learned.

I had a long talk with a friend, who was diagnosed with Coeliac 7 years ago. I hadn't spoken to her for a while (busy lives) but she popped around the day after I posted and had very kindly brought me some of her own allowance to try. We spoke of Codex Wheat starch, which she found that she was unable to use also, so the samples she brought are all wheat free also.

It may be of interest to others newly diagnosed to know that Gluten Free does not necessarily imply wheat free and some of us are super sensitive.

Blessings - FS xx

pricklypear1971 Community Regular
pricklypear1971
Posted

I'm in the states and we don't usually see wheat starch listed as gluten-free (I never have) - I think it's still "wheat", therefore listed as a big 8 allergen. However, there are a few body care lines that sell degerminated wheat oil products and call them gluten-free or "gluten sensitive safe".

To me, its the same animal, different stripes (wheat starch and degerminated wheat products). Both are risky and some people will react.

I didn't react to my degerminated wheat oil product til 2 months gluten-free. Then my eyes started swelling....

There's an Italian study out there about the safety of the degerminated wheat oil and basically says it doesn't cause a reaction in Celiacs because it didn't cause a reaction in a "significant" number of subjects. I wonder if the same rationale was used for the wheat starch.

thefreespirit Rookie
thefreespirit
Posted
  • Author

I understand that Codex Wheat Starch is not permitted in the USA or in Canada, but it is in the UK. I certainly will be on making sure I am using both Gluten and Wheat Free now that I know about this wheat starch.

FS xx

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748
    Jamie0230
    Newest Member
    Jamie0230
    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

    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      Waiting Gastroenterology review

      By RMJ · Posted

      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Bev in Milw · Posted

      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...