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

Hidden Ingredients

nickim

Recommended Posts

nickim Newbie
nickim
Posted

I was diagnosed with Celiac Disease 2 months ago. I immediately went on a gluten-free diet. I got all sorts of information, met with a dietician and have not cheated once. I just had an endoscope and was told that I still have traces of gluten, and that my villi are atrophy (flattened) still and that after 2 months on the diet they should have started to heal. I am so confused, not sure what I am doing wrong. I eat very healthy, mainly fruits and veggies with spices. Are there certain ingredients in spices that contain gluten. I chew alot of gum, eat alot of salads, and usually have ranch dressing, Hellmans appears gluten-free along with Margetti's (sp). I have had chips, but always corn or tostados and meat without bread crumbs. When using barbeque sauce I use sweet baby rays. Breakfast I usually make my own smoothie with yogurt and fruit and milk or cereal from a gluten-free like natures path. I do drink the Redbridge beer which is gluten-free. I also drink Mt. Royal Light Whiskey which the company wrote to me and said it was gluten-free. Festival Foods has lunch meat from a company Krestzmar(sp) that is gluten-free and I usually get that from their deli. The bread I eat is gluten-free, UDI ( by the way it is the best bread ever, I almost cried when I had my first bite), I have my own toaster and put homemade strawberry jelly on it. I also enjoy ice cream, but there again the ingredients look okay. Is there a hidden ingredient in ice cream. If it has modified food starch, I don

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

If you are in the US, modified food starch is not wheat unless is specifically says so using the word "wheat." Hidden gluten in ice cream is almost unheard of--the only gluten would be in obvious additives like cookie dough or cookie chunks.

Spices refers to a set of plant materials, none of which are grains. "Spices" does not hide gluten. "Seasonings" is a whole different ball game, though.

My first guess would be cross-contamination at the deli.

Some people have reported issues with corn chips made by Frito-Lay. Others have no problem with them.

Lisa Mentor
Lisa
Posted

Keep a food diary. It often can pin point an issue. But, depending on your damage, it could take up to a couple of years for a full recovery.

Post your daily menu. Many of us can help you with a potential issue.

Ahorsesoul Enthusiast
Ahorsesoul
Posted

Since you are new to the gluten free diet I would suggest you also go dairy and soy free for a few months to promote faster healing. Also look at all products that go into your mouth to be sure they are gluten free. Include your drinks, medications, toothpaste, mints, anything. Try not to use plastic, wooden or coated cooking items including cutting boards, toasters and storage containers that have been in contact with gluten.

Two months probably is not enough time to show much healing if you have been glutened a few times. Think of it as a cut on your arm. If you pick the scab off every now and then it will take longer to heal. So every time you get glutened it will take longer for your intestines to heal.

Gemini Experienced
Gemini
Posted

I was diagnosed with Celiac Disease 2 months ago. I immediately went on a gluten-free diet. I got all sorts of information, met with a dietician and have not cheated once. I just had an endoscope and was told that I still have traces of gluten, and that my villi are atrophy (flattened) still and that after 2 months on the diet they should have started to heal. I am so confused, not sure what I am doing wrong. I eat very healthy, mainly fruits and veggies with spices. Are there certain ingredients in spices that contain gluten. I chew alot of gum, eat alot of salads, and usually have ranch dressing, Hellmans appears gluten-free along with Margetti's (sp). I have had chips, but always corn or tostados and meat without bread crumbs. When using barbeque sauce I use sweet baby rays. Breakfast I usually make my own smoothie with yogurt and fruit and milk or cereal from a gluten-free like natures path. I do drink the Redbridge beer which is gluten-free. I also drink Mt. Royal Light Whiskey which the company wrote to me and said it was gluten-free. Festival Foods has lunch meat from a company Krestzmar(sp) that is gluten-free and I usually get that from their deli. The bread I eat is gluten-free, UDI ( by the way it is the best bread ever, I almost cried when I had my first bite), I have my own toaster and put homemade strawberry jelly on it. I also enjoy ice cream, but there again the ingredients look okay. Is there a hidden ingredient in ice cream. If it has modified food starch, I don

Kim27 Contributor
Kim27
Posted

I think it sounds like you are being very vigilant about your food. I'm surprised your dr had you repeat an EGD already! My doctor retested my TTG IGA levels 5 weeks after going gluten-free, but only b/c I just had to get some other bloodwork done and she said might as well to see if it's dropping at all. HOWEVER she made it very clear that she would not expect my levels to be in the normal range by that time frame. She said that typically blood is retested after 5-6 months. She never mentioned a repeat EGD at this point. It makes sense that you might still have gluten in your system and visible damage, 2 months just isn't that long. If you've been damaging your body for a long time, it's gonna take some time to heal completely. I think they have insane expectations. I wouldn't take what they say too hard, if you keep being vigilant, check all your foods, and be as careful as you sound, you should continue to heal, just not going to be overnight.

ravenwoodglass Mentor
ravenwoodglass
Posted

How are you feeling? Are you still having symptoms? If your not I wouldn't worry too much about the results of the endo as it was done really quickly. Most doctors don't reendo until at least 6 months after the diet is started, if ever. Mine didn't reendo until years after I started the diet and then since he was doing a routine 'over 50' colonoscopy figured he might as well do the endo at the same time.

One thing I will say is that there are rare celiacs, like myself, who react to distilled gluten grains like that found in whiskey or gluten grain derived vodkas. It your are still having symptoms you might want to drop those for a while and see if it makes a difference. Most will tolerate them but not everyone does.

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

Celiac.com Sponsor (A8-M):


nickim Newbie
nickim
Posted
  • Author

I think it sounds like you are being very vigilant about your food. I'm surprised your dr had you repeat an EGD already! My doctor retested my TTG IGA levels 5 weeks after going gluten-free, but only b/c I just had to get some other bloodwork done and she said might as well to see if it's dropping at all. HOWEVER she made it very clear that she would not expect my levels to be in the normal range by that time frame. She said that typically blood is retested after 5-6 months. She never mentioned a repeat EGD at this point. It makes sense that you might still have gluten in your system and visible damage, 2 months just isn't that long. If you've been damaging your body for a long time, it's gonna take some time to heal completely. I think they have insane expectations. I wouldn't take what they say too hard, if you keep being vigilant, check all your foods, and be as careful as you sound, you should continue to heal, just not going to be overnight.

This was my first endo, they never tested me because my bloodwork for the celiac test was extremely high. They told me that 2 of the tests would report a high score of between 8 and 14 to test high for celiac, and mine were both over 100, and the 3rd test was high around 400 and I was over 520. Because they results were so high they didn't do a colonscopy or endo. I wasn't feeling better, still bloated etc after a week and 1/2 of feeling good, that is why I requested they do the test. I just eanted to know for sure.

nickim Newbie
nickim
Posted
  • Author

If you are in the US, modified food starch is not wheat unless is specifically says so using the word "wheat." Hidden gluten in ice cream is almost unheard of--the only gluten would be in obvious additives like cookie dough or cookie chunks.

Spices refers to a set of plant materials, none of which are grains. "Spices" does not hide gluten. "Seasonings" is a whole different ball game, though.

My first guess would be cross-contamination at the deli.

Some people have reported issues with corn chips made by Frito-Lay. Others have no problem with them.

I am in the US and have started the journal again. I also have dramatically reduced my portion sizes and that seems to help too.

Morningstar313 Newbie
Morningstar313
Posted

I was diagnosed with Celiac Disease 2 months ago. I immediately went on a gluten-free diet. I got all sorts of information, met with a dietician and have not cheated once. I just had an endoscope and was told that I still have traces of gluten, and that my villi are atrophy (flattened) still and that after 2 months on the diet they should have started to heal. I am so confused, not sure what I am doing wrong. I eat very healthy, mainly fruits and veggies with spices. Are there certain ingredients in spices that contain gluten. I chew alot of gum, eat alot of salads, and usually have ranch dressing, Hellmans appears gluten-free along with Margetti's (sp). I have had chips, but always corn or tostados and meat without bread crumbs. When using barbeque sauce I use sweet baby rays. Breakfast I usually make my own smoothie with yogurt and fruit and milk or cereal from a gluten-free like natures path. I do drink the Redbridge beer which is gluten-free. I also drink Mt. Royal Light Whiskey which the company wrote to me and said it was gluten-free. Festival Foods has lunch meat from a company Krestzmar(sp) that is gluten-free and I usually get that from their deli. The bread I eat is gluten-free, UDI ( by the way it is the best bread ever, I almost cried when I had my first bite), I have my own toaster and put homemade strawberry jelly on it. I also enjoy ice cream, but there again the ingredients look okay. Is there a hidden ingredient in ice cream. If it has modified food starch, I don

GFinDC Veteran
GFinDC
Posted

You really shouldn't assume your reactions are due to gluten. You could also be reacting to other foods as many of us do. Soy, nightshades, dairy, corn, eggs, etc etc etc can all be problems. Check out the top 8 food allergens for a starting list of potential problems.

nickim Newbie
nickim
Posted
  • Author

I'm very new to the gluten free lifestyle. I was under the impression that Sweet Baby Rays was not gluten free. Are they? Because they're my favorite, so that would be amazing!

Sweet Baby Rays is definitely gluten free so enjoy!!

  • 5 weeks later...
Jenn27 Newbie
Jenn27
Posted

Check the yogurt.. Any Yoplait yogurt is safe but there are many that aren't.

dilettantesteph Collaborator
dilettantesteph
Posted

Some spices are contaminated enough to bother super sensitive celiacs.

T.H. Community Regular
T.H.
Posted

How are you doing now? Do the symptoms seem to be improving, or are you still having trouble?

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 lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    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

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.