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. - JoJo0611 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Yeast extract

    2. - trents replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Labs ? Awaiting in person follow up with my GI

    3. - Seabeemee posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Labs ? Awaiting in person follow up with my GI

    4. - trents replied to mike101020's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      EMA Result

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

    • Total Members
      133,165
    • Most Online (within 30 mins)
      7,748

    AmynDevyn
    Newest Member
    AmynDevyn
    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

    • JoJo0611
      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks. 
    • trents
      Welcome to the celiac.com community, @Seabeemee! The fact that the genetic testing shows you do not have either of the two genes associated with the potential to develop celiac disease (HlA DQ2 and HLA DQ8) pretty much ensures that you do not have celiac disease and the biopsy of the small bowel showing "normal villous architecture" confirms this. But you could have NCGS (Non Celiac Gluten Sensitivity) which would not damage the villous architecture. You could also have SIBO (Small Intestine Bacterial Overgrowth) or H. Pylori infection. Both of these conditions would thrive on carbs and you do say you feel better when you don't eat a lot of carbs. And with your resection of the small bowel, that could be causing it's own problems like you describe. When was that surgery done? You have had over 1 foot of your small bowel removed by that surgery in 2022 so that would certainly challenge digestion and nutrient absorption.  Edited
    • Seabeemee
      My Doctor messaged me that I have no sign of Celiac disease so until I meet with her next week I don’t know what the labs mean. I am being evaluated by my new GI for Celiac disease because of digestive issues (bloating, distention, fullness in mid section, diarrhea).  I also have been diagnosed with GERD and some associated issues hence the endoscopy. I also was diagnosed with NAFLD after an abdominal CT scan in December - which surprises me because I gave up alcohol 5 years ago, workout 5 days a week, cardio / weights and cook from scratch every night. Anecdotally,  I do feel better when I do not eat a lot of carbs and have been staying away from gluten 95% of the time until my follow up.  History: I had an emergency bowel obstruction operation in August 2021 for a double closed loop obstruction, open surgery removed 40 cm of my small intestine, my appendix, cecal valve and illeocectomy. Beside the fact that this put me in the situation of no longer being able to absorb Vitamin B12  from my diet and having to  inject Vit B 12 2x a month, I also became Iron deficient and am on EOD iron to keep my levels high enough to support my Vitamin B12 injections, as well as daily folic acid. I tested positive for pernicious anemia in 2022 but most recently that same test came back negative. Negative Intrinsic Factor. My results from the biopsies showed 2nd part of Duodenum, small bowel Mildly patch increased intraepithelial lymphocytes with intact villious architecture. Comment: Duodenal biopsies with normal villous architecture and increased intrepithelial lymphocytes (Marsh I lesion) are found in 1-3% of patients undergoing duodenal biopsy, and an association with celiac disease is well established however the specificity remains low. Similar histologic findings may be seen in H pylori gastritis, NSAID and other medication use including olmesartan, bacterial overgrowth, tropical sprue and certain autoimmune disorders. So my GI ordered Labs for Celiac confirmation: Sorry I couldn’t upload a photo or pdf so typed below: TEST NAME                               IN RANGE and/or RESULTS RESULTS:  IMMUNOGLOBULIN A :           110 GLIADIN (DEAMIDATED) AB (IGG, IGA)                            <1.0 GLIADIN (DEAMIDATED) AB (IGA)                                     <1.0 GLIADIN (DEAMIDATED) AB (IGG)                                    <1.0 TISSUE TRANSGLUTAMINASE ANTIBODY, IGG, IGA TISSUE TRANSGLUTAMINASE AB, IGG                                     <1.0 TISSUE TRANSGLUTAMINASE AB, IGA                                     <1.0 INTERPRETATION: <15.0 ANTIBODY NOT DETECTED  > OR = 15.0 ANTIBODY DETECTED RESULTS: HLA TYPING FOR CELIAC DISEASE INTERPRETATION (note The patient does not have the HLA-DQ associated with celiac disease variants) More than 97% of celiac patients carry either HLA-DQ2 (DQA1*05/DQB1*02) or HLA-DQ8 (DQA1*03/DQB1*0302) or both. Genetic counseling as needed. HLA DQ2 : NEGATIVE HLA D08: NEGATIVE HLA VARIANTS DETECTED: HLA DA1* : 01 HLA DA1* : 05 HLA DQB1*: 0301 HLA DQB1*: 0501 RESULTS REVIEWED BY: Benjamin A Hilton, Ph.D., FACMG I appreciate any input, thank you.         
    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
×
×
  • 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.