Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Gluten-Free Bread, Pasta Etc.
0

12 posts in this topic

Hi everyone

Has anyone else had problems with gluten-free processed products?

Since going gluten-free a few weeks ago, I've had a few episodes of very particularly bad GI symptoms (at lot worse from the generally milder symptoms I'm still experiencing).

Every time this was following eating processed gluten-free products.

One time it was after eating gluten-free vegetarian pie in a local cafe (I don't think I was 'CC'd as they are very respected...).

The other times were after eating the gluten-free pasta or bread that I got on prescription.

Other than the pie, none of the meals contained lactose (which I am avoiding as I am intolerant) so it can't be that.

I have completely cut out these gluten-free products, just sticking to whole foods, and since haven't had any severe GI problems.

I told my dietitian about my body's apparent intolerance to these gluten-free foods and she didn't really seem to believe me. Claiming I had either accidentally consumed products that were wheat- but not gluten-free (they were DEFINITELY gluten-free products) or that I must have IBS.

But I think as its specifically these products, it must be an intolerance rather than general IBS??

Thanks,

Hannah

0

Share this post


Link to post
Share on other sites


Ads by Google:

This is a well known phenomenon in certain circles.. It is really unfortunate that some doctors and dieticians are unaware of it. It would be good for you to educate yours. This writer explains it better than I can: http://celiacdisease.about.com/od/PreventingCrossContamination/f/How-Much-Gluten-Can-Make-Me-Sick.htm

Basically, there are different levels of tolerance among different celiacs. Some tolerate processed foods without any problems and some don't. I tolerate very few.

You may be able to tolerate some products, or small amounts of some products. What I do is try only one new product per week. I start with only a small amount so as not to make myself too sick if I do react to it. With only one a week, you can tell what is bothering you.

0

Share this post


Link to post
Share on other sites

I don't tolerate processed gluten-free foods, either. There are a few that are certified to lower levels than the average which I can eat and the reaction is not severe, but if I want to avoid all reactions, processed-food-free seems to be the way to go.

That said, you might also want to take a look at what ingredients are allowed in your gluten-free food. You mention that you got the gluten-free food on prescription, so I was wondering if you might be in the UK? In the UK, certain hydrolyzed wheat products are allowed in gluten-free foods. A recent development in tests for gluten, however, has determined that the gluten tests currently in use by the food industry are not as good at detecting gluten in hydrolyzed or fermented products. They underestimate the amounts.

I have spoken to a few celiacs in the UK who were able to eat processed gluten-free food once they eliminated any products that used gluten or gluten derived ingredients, even if those ingredients are considered safe. So if you are hoping to have processed food, or are ever in a situation where you are having trouble finding safe food, that might be worth thinking about, possibly?

0

Share this post


Link to post
Share on other sites

This is a well known phenomenon in certain circles.. It is really unfortunate that some doctors and dieticians are unaware of it. It would be good for you to educate yours. This writer explains it better than I can: http://celiacdisease...ake-Me-Sick.htm

Basically, there are different levels of tolerance among different celiacs. Some tolerate processed foods without any problems and some don't. I tolerate very few.

You may be able to tolerate some products, or small amounts of some products. What I do is try only one new product per week. I start with only a small amount so as not to make myself too sick if I do react to it. With only one a week, you can tell what is bothering you.

I'm glad it's a well-known phenomenon! Thanks, I'll show my dietitian that link if she still doesn't believe me! I definitely feel more in the know than she is, as she is convinced I should be feeling completely fine straight away (despite my attempts at telling her the gastroenterologist told me it could take me years to heal!)

I don't tolerate processed gluten-free foods, either. There are a few that are certified to lower levels than the average which I can eat and the reaction is not severe, but if I want to avoid all reactions, processed-food-free seems to be the way to go.

That said, you might also want to take a look at what ingredients are allowed in your gluten-free food. You mention that you got the gluten-free food on prescription, so I was wondering if you might be in the UK? In the UK, certain hydrolyzed wheat products are allowed in gluten-free foods. A recent development in tests for gluten, however, has determined that the gluten tests currently in use by the food industry are not as good at detecting gluten in hydrolyzed or fermented products. They underestimate the amounts.

I have spoken to a few celiacs in the UK who were able to eat processed gluten-free food once they eliminated any products that used gluten or gluten derived ingredients, even if those ingredients are considered safe. So if you are hoping to have processed food, or are ever in a situation where you are having trouble finding safe food, that might be worth thinking about, possibly?

Yep you're correct in thinking I'm from the UK :). That's worrying about the underestimation of the amount of gluten, especially considering how serious it is for coeliacs to consume it...

At the moment I'm fine with the whole foods diet (although it's a little inconvenient and restricting!) but I think my dietitian would prefer me to be eating the processed food too... :/

0

Share this post


Link to post
Share on other sites

Hi everyone

Has anyone else had problems with gluten-free processed products?

Since going gluten-free a few weeks ago, I've had a few episodes of very particularly bad GI symptoms (at lot worse from the generally milder symptoms I'm still experiencing).

Every time this was following eating processed gluten-free products.

One time it was after eating gluten-free vegetarian pie in a local cafe (I don't think I was 'CC'd as they are very respected...).

The other times were after eating the gluten-free pasta or bread that I got on prescription.

Other than the pie, none of the meals contained lactose (which I am avoiding as I am intolerant) so it can't be that.

I have completely cut out these gluten-free products, just sticking to whole foods, and since haven't had any severe GI problems.

I told my dietitian about my body's apparent intolerance to these gluten-free foods and she didn't really seem to believe me. Claiming I had either accidentally consumed products that were wheat- but not gluten-free (they were DEFINITELY gluten-free products) or that I must have IBS.

But I think as its specifically these products, it must be an intolerance rather than general IBS??

Thanks,

Hannah

Hannah.....if you have only been gluten-free for a few weeks, it's not unusual for anyone to experience a reaction to processed gluten free products. Your gut is still in the infancy of healing and you can have reactions to many foods, without it being related to gluten at all. This is far more common for many people than thinking you are reacting to perceived gluten in gluten-free foods. I would stay clear of them until your gut has had more time to heal and then try them again at a later date. This is the route many people have to go when healing.

I know that the UK has different standards for gluten free than other countries and know that they may use wheat starch in some products. Wheat starch is not allowed in the US and some other countries as some peope react to it. Perhaps you have been ingesting something that contains this and is causing the problem for you?

0

Share this post


Link to post
Share on other sites




Sounds a bit bats for a dietitian to recommend adding processed foods if you are already on whole foods.

Maybe you could speak to them and ask the logic, or if they think you are missing something in your diet.

The only other thing I can think is that some people in the UK (where I am too) think that celiacs will be more compliant and stick to gluten-free better if they have access to gluten-free foods. I think it is linked to the availability of gluten-free foods on prescription.

However if you are happy with whole foods that seems fine.

I just use occasional gluten-free processed food, rice pasta from Doves Farm and brownies. They can be convenient. More than that makes me sick. Some people find once they have healed they can use more products.

Good luck :)

0

Share this post


Link to post
Share on other sites

Hi Hannah

I also so can't eat gluten free processed products or flour.

i am in the UK too and a friend whose daughter is diagnosed celiac told me that I couldn't have celiac if I can't eat the gluten free stuff - it must be something else ??? sigh !!!

I can't eat rice (really bad) or potatoes either so had wondered if due to intestinal damage I am also having problems with some carbohydrates - not managing to digest them. Jury still out on dairy products but luckily don't eat much of it.

I was resentful at first but am fine with whole foods (grain free) so am just hoping that in time I may be able to reintroduce small amounts.

0

Share this post


Link to post
Share on other sites

Hannah.....if you have only been gluten-free for a few weeks, it's not unusual for anyone to experience a reaction to processed gluten free products. Your gut is still in the infancy of healing and you can have reactions to many foods, without it being related to gluten at all. This is far more common for many people than thinking you are reacting to perceived gluten in gluten-free foods. I would stay clear of them until your gut has had more time to heal and then try them again at a later date. This is the route many people have to go when healing.

I know that the UK has different standards for gluten free than other countries and know that they may use wheat starch in some products. Wheat starch is not allowed in the US and some other countries as some peope react to it. Perhaps you have been ingesting something that contains this and is causing the problem for you?

Yeah I think the UK are definitely a lot more lax on what is and isn't 'gluten-free'!. I'm finding a lot of the gluten-free foods I see in shops have barley or wheat starch. I definitely agree on giving my gut as easy a time as possible whilst it's healing!

Sounds a bit bats for a dietitian to recommend adding processed foods if you are already on whole foods.

Maybe you could speak to them and ask the logic, or if they think you are missing something in your diet.

The only other thing I can think is that some people in the UK (where I am too) think that celiacs will be more compliant and stick to gluten-free better if they have access to gluten-free foods. I think it is linked to the availability of gluten-free foods on prescription.

However if you are happy with whole foods that seems fine.

I just use occasional gluten-free processed food, rice pasta from Doves Farm and brownies. They can be convenient. More than that makes me sick. Some people find once they have healed they can use more products.

Good luck :)

Thanks for the advice and luck :). Apart from it being inconvenient (especially when at uni all day!) and time-constricting, I am pretty happy with the whole foods diet. It's not much different to how I was eating before. The main problem is friends etc. wanting to go out for meals, which is tricky enough when you CAN eat the gluten-free processed foods!

Hi Hannah

I also so can't eat gluten free processed products or flour.

i am in the UK too and a friend whose daughter is diagnosed celiac told me that I couldn't have celiac if I can't eat the gluten free stuff - it must be something else ??? sigh !!!

I can't eat rice (really bad) or potatoes either so had wondered if due to intestinal damage I am also having problems with some carbohydrates - not managing to digest them. Jury still out on dairy products but luckily don't eat much of it.

I was resentful at first but am fine with whole foods (grain free) so am just hoping that in time I may be able to reintroduce small amounts.

I'm glad you're the same way, Lady Eowyn, my dietitian still won't believe me when I tell her other people experience it too!

I think my intestines are having trouble with pretty much everything I put in them, but some things (lactose, eggs, processed gluten-free stuff) definitely more than others!

I don't think anyone could have prepared me for the extent of this disease!

0

Share this post


Link to post
Share on other sites

Also, I found an interesting paper today;

http://www.fda.gov/downloads/Food/ScienceResearch/ResearchAreas/RiskAssessmentSafetyAssessment/UCM264152.pdf

It states that, for some people with celiac disease, anything above 1ppm of gluten in food is enough to cause detrimental health effects.

In the UK, any food with under 20ppm of gluten is labelled as gluten-free. 20x the amount found to cause harm in this study!

0

Share this post


Link to post
Share on other sites

That's just some people, but I'm one of them. Most don't have to worry.

0

Share this post


Link to post
Share on other sites

Also, I found an interesting paper today;

http://www.fda.gov/d...t/UCM264152.pdf

It states that, for some people with celiac disease, anything above 1ppm of gluten in food is enough to cause detrimental health effects.

In the UK, any food with under 20ppm of gluten is labelled as gluten-free. 20x the amount found to cause harm in this study!

Ok that paper is a summation of other studies and is enormous. :-S Which primary study does the 1ppm refer to or at the very least where does that paper say that?

0

Share this post


Link to post
Share on other sites

Ok that paper is a summation of other studies and is enormous. :-S Which primary study does the 1ppm refer to or at the very least where does that paper say that?

Sorry, there's a summary on page 46

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,671
    • Total Posts
      921,687
  • Topics

  • Posts

    • Here is an article, albeit short, about Myocarditis and Celiac disease.  I have read before about a connection between the two and A-Fib is another one that can happen with undiagnosed Celiac. From one over-thinker to another......its the inflammation thing, along with maybe some genetic components to it.  I can't remember how long you have been gluten-free but it can take awhile for things to settle down, especially if your thyroid is wonky also.  I have Celiac and Hashi's so feel your pain, even though I have not had any cardiac involvement.  Some doctors really suck. I have a lifetime of bad with them so do not go that often, only when I have to and am leery about seeing any new ones. I am so done with that attitude of theirs. I think you need to find someone who has knowledge of Celiac and it's related conditions and who actually listens to the patient. That might be harder than finding a needle in a haystack but I wish you luck! 
      https://www.ncbi.nlm.nih.gov/pubmed/12045166
    • Older people often show clinically atypical symptoms of celiac disease, which can delay diagnosis. View the full article
    • So my heart has been doing weird stuff post gluten challenge. Skips beats, arrhythmias, chest pain. It was getting a bit better then worse again in July.   My cardiologist has done 2 stress tests, halter monitor, and we have not caught anything other then harmless pvc's. But I KNOW this is not right for my heart and it has gone wacky out of sync and we never catch it on a damn test. All of my doctor's were connected out of a larger practice, so the GI, cardio, neuro, and primary care can all see the mountains of tests I had and think I am a nutcase the moment I walk through the door. I will admit that I informed the old GI about the DGP test being positive and I sent over some info on the test as they were basically using TTG and old gliadin tests, and they were receptive. But for the most part, I do not trust doctors. I was once told I was in false labor when I actually had 13 gallstones and an infection in my bile duct. I have more horror stories, as we all do. So, my protein and RBC were low in the hospital but all up to good levels now so it is not a vitamin deficiency. My heart has already skipped multiple beats today. The other day, it again went out of rhythm for just 20 seconds or so. I am not drinking coffee or alcohol because of the acidity, so it is not that. I was glutened on August 24th and probably once in July. Does anyone have weird heart issues that vanish eventually? If so, how long does it take? I am an over-thinker, which has its pros and cons. I know we are at an increased risk for CAD which is not really my concern right now. My gut is inflamed, my thyroid is inflamed and my adrenal gland was effected by all of this. I sort of wonder if an exposure to gluten causes some kind of myocarditis, an inflammation that would not be picked up a sonogram per se, and may eventually vanish with a gluten free diet. Has anyone ever had experience with myocarditis? I did a lot of reading on Roemheld syndrome, gastro-cardio syndrome, which is basically a set of cardio symptoms resulting from your gut. Praying it is just that! I just feel like now that I have a diagnosis, I need to rebuild a team of doctors that I feel have my back. This is a sucky disease that can have a lot of ill effects and I need a team I feel is intelligent, supportive and willing to research. I already have a new GI and a great Endocrinologist. I am seriously contemplating a new cardio and neuro as they both talk to me like I am a 12 year-old with "hysterical girl syndrome".
    • I was not officially diagnosed with narcolepsy when I was younger and still haven't.  However, even in my junior high and high school years and on through my college years staying awake was always a struggle for me.  maybe the gluten was a factor back in junior high and just didn't realize it.    There were times in church and other times I would just BAM fall asleep without warning.  Frustrating and somewhat embarrassing to say the least.  Now that I have been off gluten for close to a year now, the "feeling" of needing to sleep is becoming less and less.  Still have periods of sudden sleepiness, but not as often any more.
    • when they first came out, I read the ingredients on them, and they don't seem to contain malt.  But the company, at that time specifically posted on the website that they  are not gluten-free.  So I don't drink them.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,669
    • Most Online
      3,093

    Newest Member
    Cjplmon
    Joined