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. knitty kitty
      - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      7

      Feel like I’m starting over

      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies. It's worth talking to a dietician or nutritionist about. Did you get a Marsh score at your diagnosis? Was your tTg IgA level very high? These can indicate more intestinal damage and poorer absorption of nutrients. Are you eating...
    2. knitty kitty
      - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      34

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Vitamin and mineral deficiencies can make TMJ worse. Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain. Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease. It's important to eat healthy nutrient dense diets like the Autoimmune...
    3. Celiac.com Sponsored Post
      0

      Recently launched Daura Non-Alcoholic Named One of the Best in the World by Forbes

    4. Iam
      - Iam replied to Larzipan's topic in Related Issues & Disorders
      34

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Yes. I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy. Numerous dental visits and several professionally made bite plates did very little to help with symptoms
    5. trents
      - trents replied to Scatterbrain's topic in Sports and Fitness
      7

      Feel like I’m starting over

      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,307
    • Most Online (within 30 mins)
      7,748
    Hcon74
    Newest Member
    Hcon74
    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

    • knitty kitty
      Feel like I’m starting over

      By knitty kitty · Posted

      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Vitamin and mineral deficiencies can make TMJ worse.  Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain.  Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease.  It's important to eat healthy nutrient dense diets like the Autoimmune Protocol Diet, a Paleo diet that has similarities to the Mediterranean diet mentioned in one of the studies.   Is there a link between diet and painful temporomandibular disorders? A cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC12442269/   Nutritional Strategies for Chronic Craniofacial Pain and Temporomandibular Disorders: Current Clinical and Preclinical Insights https://pmc.ncbi.nlm.nih.gov/articles/PMC11397166/   Serum nutrient deficiencies in the patient with complex temporomandibular joint problems https://pmc.ncbi.nlm.nih.gov/articles/PMC2446412/  
    • Iam
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Iam · Posted

      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
    • trents
      Feel like I’m starting over

      By trents · Posted

      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    • bobadigilatis
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By bobadigilatis · Posted

      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
×
×
  • 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.