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

Any Tips With Diet For Someone Who's Been gluten-free For Over A Year?

DeerGirl

By DeerGirl
in Coping with Celiac Disease

Recommended Posts

DeerGirl Apprentice
DeerGirl
Posted

I've been gluten-free for a bit over a year and have done pretty well. Have had some glutenings. Most recent one this week was either eating at Chipotle (no problem before) or a dental alginate. Or something else entirely different from gluten.

Now that I've been at the diet for awhile I feel a bit over-loaded with info. It is as though I have too much information and am not sure how to 'organize' or use it. Have gone over my books, documents on the diet. I'm wondering if anyone has had this experience??

The routine I've gotten is, if it says gluten free, I typically believe it. If I read the ingredients and there are no gluten-containing ingredients, I often believe it. If the ingredients have no gluten-containing ingredients *and* I have previously checked the company and know they say gluten-free I go ahead and eat it.

I get most confused with which flavorings, additives to be looking for, guidelines have changed it seems. What about glucose syrup made from gluten? I have the new guidebook from Celiac Disease Center at Columbia University is handy, still I feel confused.

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

I'd bet your glutening came from dining out.

Do you have a print out of the companies which are safe? It may be helpful to bring that shopping with you.

I have a few folders of my most important stuff, next to my good Celiac books, and then I have a few word documents with info or links, as well as a "Celiac" folder on my favorites list that has information.

I don't have an answer on the "glucose" question - is there a specific product that you are interested in, that has this specific ingredient?

It is always good for all of us to re-evaluate how we are doing, gluten-free!

psawyer Proficient
psawyer
Posted

From the Canadian Celiac Association Pocket Guide:

GLUCOSE SYRUPS - ALLOWED

A purified concentrated water-soluble solution of sugars. Can be made from a variety of starches such as corn, potato or wheat. The manufacturing process renders glucose syrups gluten-free regardless of the source of the starch.

DeerGirl Apprentice
DeerGirl
Posted
  • Author

Thank you. I just hate to think that the Chipotle did me in.

Do you find that you need to check things often still? As much as I've internalized, I am still feeling like there are complications.

What about products that do not contain any gluten but may have been "processed in a facility that handles wheat...." -- eat it or pass?

Also, thanks for the glucose syrup answer.

happygirl Collaborator
happygirl
Posted

I don't check things that often anymore (in terms of calling companies) because I generally use the same products and brands....and so many products are made by companies that have good labeling practices. I occassionally email companies so that I can have it on file, but I don't remember the last time I actually called a company for a specific product that I wanted to use.

What are the complications you mentioned-maybe someone here can help?

Any fast food/restaurant that has wheat has the potential for cross contamination. There is one restaurant that I do very well with in my area, but every so often, I still get sick.

curlyfries Contributor
curlyfries
Posted
What about products that do not contain any gluten but may have been "processed in a facility that handles wheat...." -- eat it or pass?

This really depends on the individual. Some people do fine with these products, others do not.

DeerGirl Apprentice
DeerGirl
Posted
  • Author

Thank you.

I think I really get stuck with additives, flavorings and other 'miscellany' on ingredient lists. Some gluten free lists I have suggest that any "flavorings" are suspect and should be researched, while others say they are fine.

Won't it be nice if/when everything is required to be labeled? (hoping....)

Also -- Roquefort, Bleu, Gorgonzola cheeses -- I hear they are ok as the bread mold they are grown from leaves no bread behind, and most domestic cheese does not have bread starter (still not sure if that is true). However I do encounter non-domestic or artisanal cheeses and I admit I've eaten it on the assumption that there just isn't any gluten in it once the cheese has developed.

Thoughts?

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

Celiac.com Sponsor (A8-M):


curlyfries Contributor
curlyfries
Posted
Thank you.

I think I really get stuck with additives, flavorings and other 'miscellany' on ingredient lists. Some gluten free lists I have suggest that any "flavorings" are suspect and should be researched, while others say they are fine.

I only stick to the companies that I know label any gluten, so it doesn't matter if it says 'additives, flavorings', etc.......they are safe unless they clearly say otherwise. If you haven't seen this site, yet, it will be a big help......

Open Original Shared Link

I can't help you on the cheese question.

happygirl Collaborator
happygirl
Posted
I think I really get stuck with additives, flavorings and other 'miscellany' on ingredient lists. Some gluten free lists I have suggest that any "flavorings" are suspect and should be researched, while others say they are fine.

Thoughts?

Flavorings, etc. can be suspect if:

1. They are not on the lists of full disclosure ( Open Original Shared Link and Open Original Shared Link

2. All FDA products require wheat to be listed (per the 2006 FDA Food Allergen Labeling Law), so it can't be hidden at all, in any form.

3. After that, the concern would only be in non-disclosing companies, and not wheat....rye flavoring or oat flavoring, in my opinion, is rare, so most of the time you would have to worry about barley/barley malt. It depends on the food as to, in my opinion, I would follow up. For example, a can of veggie soup would be more likely(but certainly not necessarily!) to have undeclared barley, than say....a can of peaches.

If you have specific products that you aren't sure about, I'm sure someone here has an answer or opinion :)

DeerGirl Apprentice
DeerGirl
Posted
  • Author
Flavorings, etc. can be suspect if:

1. They are not on the lists of full disclosure (Open Original Shared Link and Open Original Shared Link

2. All FDA products require wheat to be listed (per the 2006 FDA Food Allergen Labeling Law), so it can't be hidden at all, in any form.

Brilliant linking to that site, very handy thanks.

This may be silly but I am still confused with how the 2006 law really works. This means "starch" on something has to be identified as wheat if it has it? If a label doesn't say wheat it means... no wheat in it? Does this go for all food, including imported (would that fall under FDA guidelines)?

happygirl Collaborator
happygirl
Posted

Its not silly at all, but it is helpful to understand it.

Doesn't matter if the food is imported or not. If its sold in the US and regulated by the FDA, then the law applies.

Wheat must be declared and cannot be hidden (starch, flavoring, or any other ingredient). If you don't see wheat, it isn't in there.

DeerGirl Apprentice
DeerGirl
Posted
  • Author
Its not silly at all, but it is helpful to understand it.

Doesn't matter if the food is imported or not. If its sold in the US and regulated by the FDA, then the law applies.

Wheat must be declared and cannot be hidden (starch, flavoring, or any other ingredient). If you don't see wheat, it isn't in there.

happygirl - you've been so helpful, from the first time I joined here. Thanks for your help! :D

happygirl Collaborator
happygirl
Posted

You are more than welcome, Deergirl. There are so many helpful people on this forum that have taught me so much. Its nice to be able to pass it on.

ang1e0251 Contributor
ang1e0251
Posted

I guess I'm a little confused as well. I have been avoiding products with "natual flavorings" unless I have hard evidence that those do not contain gluten. Am I wrong that small amounts of gluten can be hidden there?

wschmucks Contributor
wschmucks
Posted

I do not eat anything that says it was made in the same factory as wheat. I find it nearly impossible that is there is wheat in the air etc that there isnt some of it in my food. Natural Flavors-- I call the company or look it up. It really comes down to logic. I just think...

"this is salsa (insert food naem :-)), do i really need the salsa so much, that I will risk being sick in the short term and long term, when i can just eat something else".

It can get very frustrating. But if with this disease we are supose to avoid gluten at all costs, then really we should avoid gluten at all costs. Its so easy to get relaxed -- but that little phrase above is what i say to myself to get it in persepective. Not worth it for one little bite of food.

happygirl Collaborator
happygirl
Posted
I guess I'm a little confused as well. I have been avoiding products with "natual flavorings" unless I have hard evidence that those do not contain gluten. Am I wrong that small amounts of gluten can be hidden there?

Wheat cannot be hidden, but others technically could be. However, if it is one of the companies with good labeling practices, then - no.

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 rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748
    Tony White
    Newest Member
    Tony White
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.