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

Gluten Free Wheat Starch


thefreespirit

Recommended Posts

thefreespirit Rookie

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

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

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

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,914
    • Most Online (within 30 mins)
      7,748

    ChrisMary
    Newest Member
    ChrisMary
    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

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.