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

Recommended Posts

Kauk Rookie

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

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

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

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

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

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
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
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.

  • 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. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
×
×
  • 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.