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 Could Just Cry...

aikiducky

By aikiducky
in Coping with Celiac Disease

Recommended Posts

aikiducky Apprentice
aikiducky
Posted

I'm not often frustrated with my diet... but today I had such a disappointment! I found (I thought) a gluten free dairy free marzipan bar today. I have been wanting marzipan, it's in all the shops here. :P

It said gluten free on the package and all! I was optimistic enough to buy two. Since the ingredients listed glucose syrup though, without giving the source, I didn't eat it before checking the manufacturer's website. Getting my hopes even higher by all the hype about their high standards and all on the website...

The glucose syrup is made from wheat. :(

:angry::angry::angry::angry::angry::angry::angry::angry:

At least I DIDN'T eat it. I'm going to have some raisins instead. :)

Why on EARTH couldn't they use a naturally gluten free syrup instead?

Pauliina

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

If it said Gluten Free on the package, but the website said otherwise, I would most DEFINITELY contact the company and ask them to please remove the Gluten Free label from the package if that is not the case. They really need to be made aware of what gluten is, and if this particular product is in fact gluten free or not, they need to clarify it. What is the company so we can all bombard them with e-mail or phone calls or letters???!!!

jerseyangel Proficient
jerseyangel
Posted

Thank goodness you checked the website before you ate it!! When I think of the times I see gluten free on a label and just assume that its fine--that company needs to get their act together :angry:

aikiducky Apprentice
aikiducky
Posted
  • Author

Thing is I'm in Europe, so if the glucose syrup has gluten under the Codex Alimentarius norm amount, they are allowed to call it gluten free. I just think that in that case they should at least mention that there still can be traces of gluten for us extra sensitive people to avoid. :(

I hate the Codex norm with a passion, it makes my food shopping such a PITA. Even lists of gluten free foods are suspect, I always have to check how they define "gluten free".

Oh well, I'm almost over it. :rolleyes: Raisins are good...

Pauliina

Guest nini
Guest nini
Posted

can't you make a homemade marzipan? I don't know how difficult this would be, I'm just asking.

KenS Newbie
KenS
Posted
I'm not often frustrated with my diet... but today I had such a disappointment! I found (I thought) a gluten free dairy free marzipan bar today. I have been wanting marzipan, it's in all the shops here.  :P

It said gluten free on the package and all! I was optimistic enough to buy two. Since the ingredients listed glucose syrup though, without giving the source, I didn't eat it before checking the manufacturer's website. Getting my hopes even higher by all the hype about their high standards and all on the website...

The glucose syrup is made from wheat.  :(

:angry:  :angry:  :angry:  :angry:  :angry:  :angry:  :angry:  :angry:

At least I DIDN'T eat it. I'm going to have some raisins instead.  :)

Why on EARTH couldn't they use a naturally gluten free syrup instead?

Pauliina

<{POST_SNAPBACK}>

Hi Aikiducky

My information is that glucose syrup has no detectable gluten even if derived from a gluten containing grain. I beleive this information, supplied by The Coeliac Society of Australia, to be correct. I've certainly never had a problem with it.

aikiducky Apprentice
aikiducky
Posted
  • Author

Nini, I have no idea. :D But I don't think I want it badly enough to figure out how to make some myself. Just like I do like cakes but I never bake - laziness wins over gluttony...

I could chew on some almonds and sugar, it all gets mixed up in the tummy anyway, doesn't it? ;)

That sounds like I'm really five years old, lol.

Pauliina

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

LOL! No... I understand!

I really really want a gluten-free Krispy Kreme type donut, but I'm too lazy to try to figure out how to make one.

tarnalberry Community Regular
tarnalberry
Posted

at least try looking up a recipe. from what I remember, marzipan is not hard to make at all.

bluelotus Contributor
bluelotus
Posted
Hi Aikiducky

                 My information is that glucose syrup has no detectable gluten even if derived from a gluten containing grain. I beleive this information, supplied by The Coeliac Society of Australia, to be correct. I've certainly never had a problem with it.

<{POST_SNAPBACK}>

Hi KenS,

I don't know anything about glucose syrup, so is this something that is distilled from a grain? I don't want to bring up that debate again (I kind of got upset with some in the forum, including Tarnalberry....feel bad :( ) Anyway, if it is distilled or just 'grain-derived' at some point, maybe there is an inherent contamination risk involved. I know I have had a rxn to distilled grains (without gluten additives), and I think others have too, regardless of whether the distillation is supposed to remove all gluten.

I am not trying to be argumentative, just curious about glucose syrup specifically (not asking about general grain distillation). Thanks.

Felidae Enthusiast
Felidae
Posted

I googled it for you because I love marzipan, but I have not had any since going gluten-free. That codex is such a pain. It is hard enough shopping here knowing that gluten-free means gluten-free and every time I see a European product sold here that looks good, I wonder if it is really safe.

2 cups of confectioners’ sugar

½ pound of finely ground blanched almonds (or prepared almond paste as directed on box)

2 egg whites

½ teaspoon of salt

½ teaspoon of almond extract

Blend all of the ingredients together until smooth and completely blended together.

Wrap or cover tightly and chill until firm.

lovegrov Collaborator
lovegrov
Posted
LOL! No... I understand!

I really really want a gluten-free Krispy Kreme type donut, but I'm too lazy to try to figure out how to make one.

<{POST_SNAPBACK}>

Don't waste your time. KK doughnuts can't be replicated without gluten.

richard

KenS Newbie
KenS
Posted
Hi KenS,

I don't know anything about glucose syrup, so is this something that is distilled from a grain?  I don't want to bring up that debate again (I kind of got upset with some in the forum, including Tarnalberry....feel bad  :( )  Anyway, if it is distilled or just 'grain-derived' at some point, maybe there is an inherent contamination risk involved.  I know I have had a rxn to distilled grains (without gluten additives), and I think others have too, regardless of whether the distillation is supposed to remove all gluten. 

I am not trying to be argumentative, just curious about glucose syrup specifically (not asking about general grain distillation).  Thanks.

<{POST_SNAPBACK}>

Hello Bluelotus,

I'm sorry, I don't know how glucose syrup is manufactured. I depend completely on the ingredient list provided by "The Coeliac Society of Australia", and I haven't been let down yet. (Over six months now).

I may be quite wrong here, but I feel that if you have problems with distilled products, there may be something else going on besides or in addition to celiac disease.

Sorry I can't be more helpful, I can only speak from my own experiences.

Ken.

bluelotus Contributor
bluelotus
Posted

Thanks anyways. Like I said, I am not trying to get into a debate about distilled products. I got sick off it, it may be b.c it was distilled, it may be because of crappy contamination control in a plant that obviously uses wheat. I have celiac disease. Never seen glucose syrup in the states, so its not a big deal.

Thanks anyways for your concern.

aikiducky Apprentice
aikiducky
Posted
  • Author
Hi Aikiducky

                My information is that glucose syrup has no detectable gluten even if derived from a gluten containing grain. I beleive this information, supplied by The Coeliac Society of Australia, to be correct. I've certainly never had a problem with it.

<{POST_SNAPBACK}>

Hi Ken,

your information is correct - up to a point. Theoretically, glucose syrup should be safe - unfortunately, no one told my gut that, and it still reacts... for me gluten-free really has to be 100% naturally gluten free. I know other people with the same problem, too, it's a constant topic on local gluten-free mailing lists. The new European food labelling laws might help, we'll see.

Thank you for the recipe Felidae! Maybe I can get my mom to make some... :D

Pauliina

Beanie Newbie
Beanie
Posted
:( It is sad that MD means more drugs!!!A word of warning: A recent New York Times editorial reported on new research of the enzyme tryptophan. This is being touted as a "new" promising treatment for those with, among other things, auto-immune disease. It's already being used in trials in Britain. It has a bad track record and I hope that the medical profession, researchers and pharaceutical companies do not begin to push this on an unsuspecting public! It's been around for quite some time possible adverse outcomes are extremely serious.
darlindeb25 Collaborator
darlindeb25
Posted

So, is glucose syrup similiar to corn syrup here? By the way--Krispy Kremes! I used to sell them, I never have had one, by the time I was selling them at work, I was already gluten free. We had a company before KK called The Sweet Shop--a mom and pop place---they made the best donuts I ever had. When Speedway (where I worked) switched to Krispy Kremes, people threw a fit, they wanted the Sweet Shop back. I am happy I dont crave donuts--I never was one who needed donuts or cakes---now a good choc chip cookie--yummmmmm! :P

As for listing gluten--companies get away with that disclaimer--"We dont feel the level of gluten is detectable" I feel any level is too much and if it isnt a high enough level to be detectable, then it doesnt need to be in the product to begin with. I found vitamins a few weeks ago--Puritan Pride--and they stated they are gluten free, but there is barley grasses on the label---of course, they have that nice little disclaimer at the bottom of their site--I wont use the vitamin.

We have to watch out for us and we have to make them all pay attention to us. Deb

aikiducky Apprentice
aikiducky
Posted
  • Author
So, is glucose syrup similiar to corn syrup here?  Deb

<{POST_SNAPBACK}>

I guess so, only it can be made of wheat as well, and until now, it wasn't necessary to list on the ingredients whether or not it was made from corm or wheat. I'm not sure if that is going to change, I'm not completely up to speed about that yet.

BTW, I got a reply from the company. They were sorry that I couldn't use their product, but the glucose syrup was necessary for the something or other, consistency or something. Oh well. They did reply promptly ay least.

Pauliina

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.