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

First Time Since Diagnosis Glutened?

Karla01

By Karla01
in Super Sensitive People

Recommended Posts

Karla01 Apprentice
Karla01
Posted

Help was glutened for the first time since I went gluten free in August 2010. The only thing I added to my diet was UDI's white bread, has anyone else had a reaction, or any idea what I could have reacted to? Maybe I am missing a cross contamination somewhere.

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

Celiac.com Sponsor (A8-M):


txplowgirl Enthusiast
txplowgirl
Posted

Hi Karla, some of us can't eat the gluten free foods because of other food intolerances. I can't eat Udi's bread because of the potato starch. Some react to the xantham gum and some react to the low level of gluten in the bread. All so called gluten free packaged foods still have low levels of gluten in them. If you eat a lot of gluten free foods sooner or later it has a cumulative effect.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Hi Karla, some of us can't eat the gluten free foods because of other food intolerances. I can't eat Udi's bread because of the potato starch. Some react to the xantham gum and some react to the low level of gluten in the bread. All so called gluten free packaged foods still have low levels of gluten in them. If you eat a lot of gluten free foods sooner or later it has a cumulative effect.

Tx Plox girl I know you have been around for a while but I don't think it's very accurate to say that "all gluten-free packaged foods still have low levels of gluten in them..." The truth is we can't know for sure if they have small amounts of gluten because it's impossible to test for amounts smaller than 5 PPM. I am very, very sensitive to cc, but for the most part I trust companies that make only gluten-free items in only gluten-free dedicated facilities. I don't think they are intentionally adding 2 PPM of gltuen and calling it gluten-free or doing other risky things when it comes to processing.

Now to the OP--did you toast Udi's in a toaster previously used for gluten? Some people do react to other ingredients in Udi's but that doesn't mena it has gluten in it.

Karla01 Apprentice
Karla01
Posted
  • Author

Thank you both, no I have my own toaster, actually looked after I got sick to make sure it was the right one. Maybe something in the bread, I haven't really eaten any bread because I didn't like the way any of it tasted. It sure is strange though got sick yesterday after eating it and today. Guess we wont try for a third.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Thank you both, no I have my own toaster, actually looked after I got sick to make sure it was the right one. Maybe something in the bread, I haven't really eaten any bread because I didn't like the way any of it tasted. It sure is strange though got sick yesterday after eating it and today. Guess we wont try for a third.

There have been a few threads on here where other people reported reacting to Udi's so you are not the only one that has a problem with it. It could be anything from the Xathan gum to one of the "dough conditioners" they use. Especially since you said you have not eaten much gluten-free bread before there's a good chance you have an intolerance to one of the other ingredients. I would drop it if I had a problem with it too. Smart choice!

T.H. Community Regular
T.H.
Posted

The truth is we can't know for sure if they have small amounts of gluten because it's impossible to test for amounts smaller than 5 PPM.

Actually, that's not quite true. There's a new test out now by a company called neogen that can test down to 2ppm.

And while I have not tested a lot of products at home with gluten kits, between myself and others I know who do test, it's been really, really, REALLY rare that a processed food has not tested positive with at least a trace of gluten.

Heck, even unprocessed stuff sometimes tests positive when you'd never expect it. Like the outside of an orange or unprocessed (but still handled) seaweed (both 5ppm).

I don't believe stating that gluten free foods contain low levels of gluten is inaccurate, nor unfair to the company. It's not that companies aren't careful - I've called up companies and talked at length with them about some of the ways in which they take care to keep gluten from their food, but there is only so much care they can take. They cannot control every aspect of our society and frankly, Gluten is pretty ubiquitous. It's an ingredient in soaps, a contaminant in pre-emergents, on the hands of field hands that pick the food, in paper products, on coatings and sprays and mulches and...the list just goes on and on. It's in construction materials, so can even be in the building materials used to build the silos to store our food on the farm before shipping. Heck, Ford is adding wheat (and soy) to plastics for the insides of some of our cars, now, to make them more 'green.'

It is nearly impossible to have a food go from field to store without coming into contact with gluten somewhere. Yes, the amount of gluten is itty bitty. Most celiacs are just fine, although not all. But 'low' doesn't mean it doesn't exist, and looking at how many points of contact a food has that might overlap with gluten cc? The odds are in favor of gluten contamination rather than against it.

dilettantesteph Collaborator
dilettantesteph
Posted

I had to give up eating processed grain containing foods because of apparent gluten reactions. I started buying my grains whole and sorting them. I have found gluten grains in just about all samples. It has taken a lot of sorting, but ppm means parts per million and a million grains is a lot to look through.

Since I highly doubt that companies which sell gluten free food will go to the trouble to sort their grains one by one and remove gluten grains before grinding them to flour, it is easy for me to see how gluten gets into these products. I also wash my whole grains in case there are any tiny particles containing gluten on them. Then they tend to be safer for me to eat.

You were wise to add a new item carefully and watch for a reaction. That is a good way for super sensitives to find safe foods to eat.

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

Celiac.com Sponsor (A8-M):


  • 4 weeks later...
padma Newbie
padma
Posted

I had to give up eating processed grain containing foods because of apparent gluten reactions. I started buying my grains whole and sorting them. I have found gluten grains in just about all samples. It has taken a lot of sorting, but ppm means parts per million and a million grains is a lot to look through.

Since I highly doubt that companies which sell gluten free food will go to the trouble to sort their grains one by one and remove gluten grains before grinding them to flour, it is easy for me to see how gluten gets into these products. I also wash my whole grains in case there are any tiny particles containing gluten on them. Then they tend to be safer for me to eat.

You were wise to add a new item carefully and watch for a reaction. That is a good way for super sensitives to find safe foods to eat.

I have seen you post this before and it has been very helpful to my understanding. The other day I was trying to imagine how much volume a million grains are. Anyone have an idea?

As far as Udi's is concerned, I tried it when it came out. I was thrilled with the way it tasted and how it felt more like real bread. Unfortunately, I can not eat it. After a few days I was ill. I have given most of them up now and am adding one at a time to test them. I was trying it every 4 days, but now am spreading it out more to at least a week, that way I can tell for sure what my reaction is.

In response to the "you could be reacting to other ingredients": Yes, it is true and possible. Most of us have a specific reaction to gluten that is different than allergies. I know I do. The kind of pain I get is specific. It is piercing and has sent me to the hospital a few times. For at least 8 years I ate gluten-free food with no problems and then I ate some Food for Life rice bread and got really ill. That particular day I had only eaten 3 things and it was the only potentially gluten food.I called all 3 companies to confirm. The FFL company was very polite and said they had not ever had a report of gluten in their food, but they sent me a FedEx bag to test the bread. I never heard back from them. I have tried their bread since and still react, so something has changed. Sad for me after eating that brand for so many years.

When Udi's came out I was excited to find something new. Unfortunately, I don't tolerate it, so back to organic whole brown rice that has been washed well and sorted. It is delicious.

WinterSong Community Regular
WinterSong
Posted

I think I'm having a reaction to Udi's, too. I recently made my own bread and felt great when I ate that. I ran out and switched back to Udi's. Nothing else in my diet has changed, but I get some stomach gurgles and my BMs instantly changed.

I've used xanthan gum in cookies and was fine with it, and I tolerate baked sweet potatoes just fine, so I don't think it's the potato starch. :unsure:

Not sure what's doing it, but I'm going to continue making my own bread as much as I can and use the Udi's in my freezer as an occasional back up.

padma Newbie
padma
Posted

I think I'm having a reaction to Udi's, too. I recently made my own bread and felt great when I ate that. I ran out and switched back to Udi's. Nothing else in my diet has changed, but I get some stomach gurgles and my BMs instantly changed.

I've used xanthan gum in cookies and was fine with it, and I tolerate baked sweet potatoes just fine, so I don't think it's the potato starch. :unsure:

Not sure what's doing it, but I'm going to continue making my own bread as much as I can and use the Udi's in my freezer as an occasional back up.

Having been at this for 10 years, I no longer keep anything that could potentially gluten me for a back up. I got rid of anything I had a reaction to a few months ago, then have added only one thing a week to see if I react. If I don't have a reaction in one day, then I eat it again the next day, etc. Usually, if it is low in gluten, it might take a few days to end up in pain. If I am lucky, I have no reaction and that food is put on the OK to Eat list. At the moment that list is very short for products that are "gluten free". I need to start making my own bread. I use to do that years ago and then got lazy because there were brands I could safely eat. You inspire me.

mushroom Proficient
mushroom
Posted

I tolerate baked sweet potatoes just fine, so I don't think it's the potato starch. :unsure:

Sweet potatoes are not related to potatoes :blink: Potatoes are a nightshade, sweet potatoes are not. I eat sweet potatoes all the time - can't touch that other kind :( or anything with potato starch in it.

Kinda like wheat and buckwheat - different families :P

WinterSong Community Regular
WinterSong
Posted

Mushroom - Good to know, thanks for the info! Learning something new every day :) I actually ate white potatoes over the weekend and felt fine.

After doing some more thinking about it, I'm tending to think that it may be the xanthan gum (rather than CC or low levels of gluten) because of its supposed laxative effect. Though I don't remember the cookies bothering me, I only made them once. And I don't feel like I'm experiencing any other gluteny symptoms like I did when I know I was glutened.

padma - Thanks for the advice. Have fun making your bread! It's gonna be my project for Friday B)

Karla01 Apprentice
Karla01
Posted
  • Author

Having been at this for 10 years, I no longer keep anything that could potentially gluten me for a back up. I got rid of anything I had a reaction to a few months ago, then have added only one thing a week to see if I react. If I don't have a reaction in one day, then I eat it again the next day, etc. Usually, if it is low in gluten, it might take a few days to end up in pain. If I am lucky, I have no reaction and that food is put on the OK to Eat list. At the moment that list is very short for products that are "gluten free". I need to start making my own bread. I use to do that years ago and then got lazy because there were brands I could safely eat. You inspire me.

I am hearing alot making homemade bread, I think I might look into that. Does everyone use a bread machine? and good recipes?

Marilyn R Community Regular
Marilyn R
Posted

I am hearing alot making homemade bread, I think I might look into that. Does everyone use a bread machine? and good recipes?

I was feeling "off" today and I'm wondering if it was due to Udi's. It's the only palatable gluten-free bread I've found.

I have a good recipe for flatbread that I've posted before. It's 1 cup chickpea flour, 1/4 cup rice flour, 1 cup water. Mix until smooth. Add 1 tsp cumin, 1 tsp salt, 1 cup shredded zucchini (skin on). You can substitute part of the zucchini with shredded carrot and/or onion. Mix well.

Heat a griddle over medium high heat until hot.

Put 1/3 cup of your bread batter on the griddle and quickly spread it out thinly in a circular outward motion on the griddle using the back of a spoon. Let it cook for a minute or two, check to make sure it's well browned and flip it over.

Cook it on the otherside for a minute or so, and flip it again twice. Here's a U-Tube link...I freeze what I don't eat and have had everybody who tried it ask for the recipe, and they aren't gluten-free.

WinterSong Community Regular
WinterSong
Posted

Having been at this for 10 years, I no longer keep anything that could potentially gluten me for a back up. I got rid of anything I had a reaction to a few months ago, then have added only one thing a week to see if I react. If I don't have a reaction in one day, then I eat it again the next day, etc. Usually, if it is low in gluten, it might take a few days to end up in pain. If I am lucky, I have no reaction and that food is put on the OK to Eat list. At the moment that list is very short for products that are "gluten free". I need to start making my own bread. I use to do that years ago and then got lazy because there were brands I could safely eat. You inspire me.

Haha, so I kept having a reaction, and I've decided to just stop eating Udi's altogether. I baked two batches of bread this morning and am just going to stick with things I make myself that I know are safe. Maybe once I've healed a little more I'll try a piece again to see if I react, but right now it's not worth it. But my bread is way better than anything store bought anyway :D

Skylark Collaborator
Skylark
Posted

We had a long thread about Udi's once before. Some people just can't eat their breads. I've just found bread by Schar and it's as good as Udi's. Maybe you can find that one. Rudi's is supposed to be good too.

padma Newbie
padma
Posted

Haha, so I kept having a reaction, and I've decided to just stop eating Udi's altogether. I baked two batches of bread this morning and am just going to stick with things I make myself that I know are safe. Maybe once I've healed a little more I'll try a piece again to see if I react, but right now it's not worth it. But my bread is way better than anything store bought anyway :D

Would you like to share your bread recipe? The one I have isn't so great, it is like glue.

I am also going to try the pita bread looking recipe. It will be a real breakthough when I get this part of my diet worked out. I have a blender with a special attachment for making flour. I haven't tried it yet.

Thanks to all of you for sharing your ideas.

WinterSong Community Regular
WinterSong
Posted

Would you like to share your bread recipe? The one I have isn't so great, it is like glue.

I am also going to try the pita bread looking recipe. It will be a real breakthough when I get this part of my diet worked out. I have a blender with a special attachment for making flour. I haven't tried it yet.

Thanks to all of you for sharing your ideas.

Sure thing! I love sharing my recipes!

Almond/flax bread (no yeast):

Buckwheat bread (uses yeast):

Let me know how you like them if you decide to try them out! :)

Archived

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

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


  • Member Statistics

    • Total Members
      131,554
    • Most Online (within 30 mins)
      7,748
    Becky 0163
    Newest Member
    Becky 0163
    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.