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

I Am New And Have A Question.

Kauk

By Kauk
in Coping with Celiac Disease

Recommended Posts

Kauk Rookie
Kauk
Posted

I have had this disease for about 2 years and I am fiding so many conflicting things about Modifyed starch, corn starch and such. Recently I wentr on a pill that has Modifyed starch..and I dont know of its bad..I feel worse and am way off since... I have always avoiced Modifyed corn starch but was told it was ok...now I am so confused. Anyone able to help?

Rebecca

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

Celiac.com Sponsor (A8-M):


darlindeb25 Collaborator
darlindeb25
Posted

Rebecca, are you in the US? With the new allergen laws, the allergens must be listed on the label. Modified food starch is said to be ok now, what you are reading is info we used to live by. I too, worry about it though, and usually stay away from items that say "food starch"! Modified corn starch is fine, as long as you are not intolerant of corn, it does not contain gluten.

As for meds, those are not regulated in the same way. Many times the fillers may contain gluten. You should get in touch with the company that makes the product and ask it's gluten status. Most companies now do know what gluten is.

An example is Xanax. I was taking it for years, was told it was gluten free, and yet I had a reaction to it within 12 hours of taking it. I always thought the reaction must be just my body, not the Xanax, since they said it was gluten-free. Well, in time, Pfizer finally stated that Xanax was not gluten free, then they said they never said it was. I had been taking the generic brand made by Greenstone labs, which turns out, is a subsidiary generic brand company owned by Pfizer. So, all along, I was being glutened. It took me a long time to find a generic brand that is gluten-free, but I do finally have it. You must call these companies personally, and get your own info. I trusted Glutenfreedrugs.com and have learned my lesson. They are still listing Xanax as gluten-free.

gfp Enthusiast
gfp
Posted

Rebecca,

I'm in the UK but I have to agree with everything deb said....

Quite honestly I don't trust the "If it's doesn't say then it's not from wheat" because of reactions similar to Deb...

(generic asprin amongst others)....

Like Deb's I then investigated and got the same response... "We never claimed it was gluten-free" ...

This has happened to me on so many things I really have 'trust issues' with companies and the lengths they go to disguise stuff. The ONLY real way is by writing a letter or email and put thewm on the spot...

Make it VERY CLEAR... don't give them loopholes etc. to give a vague answer.

Can you guarantee that <> is 100% gluten free.

ravenwoodglass Mentor
ravenwoodglass
Posted

Unfortunately as stated the regs for inert ingredient labeling for meds just don't exist. I think another issue is the insistance that wheat starch can be made gluten-free by processing. If drug companies believe that wheat starch can be processed to take ALL the gluten out they can still tell us legally that the pill is gluten-free. Thank you codex standards GRRRRRRRRRRRR.

Kauk Rookie
Kauk
Posted
  • Author

Thanks all.

I have to ask because I was told once...Gluten free...doesnt mean Wheat free....Is that true. Some of my packages say wheat AND gluten free. I wonder if its gluten free and wheat free......

I eat Modifed dorn starch and I seem to do worse...I dont kow why...Its weird. My mood ghoes south, hoever I can eat corn chips and stuff like that. I dont know what to do about the pill. Off it for 2 days and I feel better. I am not so dead tired and I feel I can eat again. UGH!!!! lol

Thanks for the replies guys. I am from Canada too..:D

happygirl Collaborator
happygirl
Posted

Its the other way around. Something that is gluten free is wheat free. But wheat free doesn't always mean gluten free, since 'gluten' is in rye, barley, and contaminated oats also.

Kauk Rookie
Kauk
Posted
  • Author
Its the other way around. Something that is gluten free is wheat free. But wheat free doesn't always mean gluten free, since 'gluten' is in rye, barley, and contaminated oats also.

OHHHHHHHHHHHHHHHHH!!!!!!!!! LMAO Thanks for clearing that up for me..Thats a huge help for me.

HUGS

Kauk

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

Celiac.com Sponsor (A8-M):


gfp Enthusiast
gfp
Posted
Its the other way around. Something that is gluten free is wheat free. But wheat free doesn't always mean gluten free, since 'gluten' is in rye, barley, and contaminated oats also.

It's both....

As Ravenswood said the insistence that wheat starch can be rendered 'gluten free' (<20ppm) means it can contain gluten and claimed to be gluten-free.

Just as it can say wheat free and contain rye or barley.

This unfortunately leaves us in a no mans land or between the rock and hard place....

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      19

      Shingles - Could It Be Related to Gluten/ Celiac

      Speaking from experience, and as someone who was taking zinc in my multivitamins at the time of my outbreak, I would not rely on zinc or other supplements to prevent a shingles outbreak. That is what the new, extremely effective, 2 shot shingles vaccine is for, and this vaccine is very effective at preventing outbreaks. In my case I've not had shingles symptoms...
    2. Threecents
      - Threecents commented on Scott Adams's article in Diagnosis, Testing & Treatment
      1

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

      I did not realize there is an HLA type that is associated with Celiac. I google it and found that while 90% of people with Celiac carry that marker, so do about 25% of the general population.
    3. trents
      - trents replied to Ginger38's topic in Related Issues & Disorders
      19

      Shingles - Could It Be Related to Gluten/ Celiac

      When you say you didn't think twice when it was offered to you, are you meaning that you dismissed it or that without hesitation you got the vaccination?
    4. trents
      - trents replied to Ginger38's topic in Related Issues & Disorders
      19

      Shingles - Could It Be Related to Gluten/ Celiac

      I would note that the article linked here is putting forth a hypothesis, not presenting a scientific conclusion. And the one about zinc as a treatment for shingles is careful to say that the evidence is weak. It gets a "Source of validity" science rating of 2 out of 5.
    5. Wheatwacked
      - Wheatwacked replied to Ginger38's topic in Related Issues & Disorders
      19

      Shingles - Could It Be Related to Gluten/ Celiac

      When I had my Shingles attack in 2019 my vitamin D was at 49 ng/ml. Doctor gave me an antiviral shot and 2 tubes of lidocaine. Sufficient intake of vitamin D and the antiviral essential mineral Zinc can help reduce risk of viral infections. I've been taking Zinc Glyconate lozenges since 2004 for airborne viruses. I have not had a cold since,...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,079
    • Most Online (within 30 mins)
      7,748
    GlutenFreeChef
    Newest Member
    GlutenFreeChef
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Shingles - Could It Be Related to Gluten/ Celiac

      By trents · Posted

      When you say you didn't think twice when it was offered to you, are you meaning that you dismissed it or that without hesitation you got the vaccination?
    • trents
      Shingles - Could It Be Related to Gluten/ Celiac

      By trents · Posted

      I would note that the article linked here is putting forth a hypothesis, not presenting a scientific conclusion. And the one about zinc as a treatment for shingles is careful to say that the evidence is weak. It gets a "Source of validity" science rating of 2 out of 5.
    • Wheatwacked
      Shingles - Could It Be Related to Gluten/ Celiac

      By Wheatwacked · Posted

      When I had my Shingles attack in 2019 my vitamin D was at 49 ng/ml.  Doctor gave me an antiviral shot and 2 tubes of lidocaine. Sufficient intake of vitamin D and the antiviral essential mineral Zinc can help reduce risk of viral infections.   I've been taking Zinc Glyconate lozenges since 2004 for airborne viruses. I have not had a cold since, even while friends and family were dropping like flies. Evidence supporting the use of: Zinc For the health condition: Shingles  
    • cristiana
      Shingles - Could It Be Related to Gluten/ Celiac

      By cristiana · Posted

      Thank you for your thoughtful contribution, @Tazfromoz. I live in the UK and the National Health Service funds free vaccines for people deemed to be at heightened risk.  I was pleasantly surprised to discover that as a coeliac in my 50s I was eligible for this vaccine, and didn't think twice when it was offered to me.  Soon after diagnosis I suffered mystery symptoms of burning nerve pain, following two separate dermatomes, and one GP said he felt that I had contracted shingles without the rash aka zoster sine herpete.  Of course, without the rash, it's a difficult diagnosis to prove, but looking back I think he was completely spot on.  It was miserable and lasted about a year, which I gather is quite typical. For UK coeliacs reading this, it is worth having a conversation with your GP if you haven't been vaccinated against shingles yet, if you are immunosuppressed or over 50. I have just googled this quickly - it is a helpful summary which I unashamedly took from AI, short for time as I am this morning!   My apologies. In the UK, coeliac patients aren't automatically eligible for the shingles jab unless they're severely immunosuppressed or over the general age for vaccination (currently 50+) but Coeliac UK recommends discussing the vaccine with a GP due to potential splenic dysfunction, which can increase risk, even if not routine for all coeliacs. Eligibility hinges on specific criteria like weakened immunity (chemo, certain meds) or age, with the non-live Shingrix vaccine offered in two doses to those deemed high-risk, often starting from age 18 for the immunocompromised.
    • Tazfromoz
      Shingles - Could It Be Related to Gluten/ Celiac

      By Tazfromoz · Posted

      My understanding, and ex I erience is that we coeliacs are likely to suffer more extreme reactions from viruses. Eg we are more likely to be hospitalised with influenza. So, sadly, your shingles may be worse because you are coeliac. So sorry you had to go through this. My mother endured shingles multiple times. She was undiagnosed with coeliac disease until she was 65. Me at 45. I've had the new long lasting vaccine. It knocked me around badly, but worth it to avoid shingles.
×
×
  • 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.