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

Cross Reactive Foods


Emilem

Recommended Posts

Emilem Apprentice

Hi there,

I was diagnosed with Celiac disease mid-March of this year. I have been on a strict gluten-free diet for over six months now. My major symptom, leading up to the diagnosis, was EXTREME edema/fluid retention and fatigue.

For a few weeks after my diagnosis, I began to feel a bit better. But not for long, I actually started to feel worse.

I experimented with some elimination diets this summer, at times they led me to "temporary relief", but nothing long-standing. Symptoms returned worse.

About a month ago, I began to develop sinus problems, scratchy throat, in addition.

I recently came across studies about "cross-reactive foods" like rice, (basically all grains) potatos, tapioca, coffee, etc. There is a list of about 18. The studies says that your body interprets these proteins similarly as it does gluten and therefore launches an inflammatory response. I have been able to link SOME of my symptomatic experiences to these foods, and about 4 days ago decided to begin trying to eliminate these items.

I am writing to ask if anyone has an insight/experience into this topic?? Any comments would be greatly appreciated. I am trying so hard to defeat this - and I won't stop until I find relief!!


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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

I had to go Paleo to get relief, so maybe the article is right and I was reacting to other foods, particularly the grains. I don't know. All I know is I feel better without any grain and kind of ok if I eat a little rice. It certainly is a battle trying to figure out what you can eat the first year. Is it cross contamination? Cross-reactive foods? Things eventually settled down, but I do know the first year was a roller coaster and the most important thing I learned was not to eat things made in a facility where wheat is also processed. I didn't think I'd be that sensitive but I was/am.

Can you post the articles? I'd be interested in them.

Emilem Apprentice

Interesting...do you think other things besides the grains were bothering you?? Nuts, beans, fruit?? How long until you felt relief? What were your symptoms if you don't mind me asking.....

This article explains the whole cross-reactivity concept, interesting I know..

Open Original Shared Link

I had to go Paleo to get relief, so maybe the article is right and I was reacting to other foods, particularly the grains. I don't know. All I know is I feel better without any grain and kind of ok if I eat a little rice. It certainly is a battle trying to figure out what you can eat the first year. Is it cross contamination? Cross-reactive foods? Things eventually settled down, but I do know the first year was a roller coaster and the most important thing I learned was not to eat things made in a facility where wheat is also processed. I didn't think I'd be that sensitive but I was/am.

Can you post the articles? I'd be interested in them.

kareng Grand Master

We have had these discussions before. As I'm remembering, we haven't had anyone able to find a reputable, scientific source for the "cross-reactivity theory". Mostly its been "articles" and "studies" by people with something to sell.

kittty Contributor

Just curious, but have you tried eliminating dairy yet? Dairy is my worst enemy right now. The lactose can cause GI issues, but the casein in milk products can cause a reaction similar to gluten.

mommida Enthusiast

If you are still having problems, try making a food journal.

The 'usual suspects" are the top 8 food allergens. We do know that the protein chain for oats is very similar to the protein chain of wheat. most "allergic" reactions are to the protein(s). Even if the oats are certified gluten free they can still be a problem for some Celiacs.

Figuring out what type of reaction you are having is a big piece of the puzzle. An Eosinophil reaction lasts for 12 days once an eosinophil has been activated.

So you may have to do an elimination diet to figure out what foods you react to.

Carebear Apprentice

I've had a lot of similar problems. I'm 9 months gluten free now, and cannot eat most grains (or at least in any reasonable quantity). I too have ended up on a pretty much paleo diet, and that has helped a bunch! Since getting things under control that way, I've been able to see some of the non-paleo items that I can still eat - for example sorghum and can sugar.

For me, I felt immediately 90% fine after going gluten free, but within 3 months or so I was having nasty gluten like reactions to soy and dairy. If the cross reactivity thing is true, I suppose it could make sense that the antibodies with the ability to target other proteins could latch on to these other foods and produce antibodies that might have more of an affinity to them (just biologically educated speculation). Either way, I've had to eliminate all the foods I was eating in large quantities at the time of my diagnoses, eggs, soy, dairy, nightshades, legumes (which I have just been adding back with no problems!), peanuts, and a couple of vegetables I may have been eating too much of on a compromised system.

It takes a lot of time to figure it out, but as soon as you can get 5 safe foods (pure ingredients), you have a base you can jump back to whenever you're sick to try out others. Hang in there and good luck! I promise it gets better, and I was a pretty bad case to start. It's possible you're becoming more sensitive to gluten too (not too uncommon it seems from this forum), and food that were ok with 10ppm gluten before may now have too much gluten for you (I had this happen to me).


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

This article explains the whole cross-reactivity concept, interesting I know..

Open Original Shared Link

This is a blog. It is not a medical journal article. It links to a "consultation" with a "health advisor". Cyrex labs is run by a chiropractor who will charge you an outrageous fee to tell you that you supposedly "cross react" with other food proteins like gluten.

Absolutely no scientific or medical evidence has been published to support this theory at all.

From another thread where we discussed this ad nauseum:

"There is peer-reviewed literature on dairy cross-reactions, a poorly executed study on corn cross-reactions (their corn turned out to be CC'd with 80 ppm gluten), and some very old articles showing that people with celiac tend to have more food antibodies to dairy and soy."

No evidence of "18 different cross-reactive foods with gluten".

Can you have other food intolerances? sure! Many of us do--but this "theory" is just that--a theory.

If you want to uncover your problem foods, do an elimination diet, taking out the top 8 allergens, remove the gut irritants like coffee, orange juice, acidic foods and alcohol --and going paleo as some suggest. That may be your best bet. Just a suggestion.

Pegleg84 Collaborator

Personally, I think the cross-reactivity theory is on to something, in that proteins like casein and soy are similar to gluten, so Celiacs are more likely to have trouble with them. I don't think they cause the same damage as gluten, though, but the jury's still out on that one.

All these theories aside, if it bothers you, cut it out. Trying an elimination diet is probably the only relibale way for you to figure out what bothers you.

Also, this "18 foods" list is inflated with stuff that contains gluten anyway! (rye, barley, etc), and "American Cheese"? That counts as milk. It doesn't need a separate category.

And even after 6 months gluten-free, your body takes a while to adjust to the new conditions of your gut. It's like, hey! I'm healed! Now what? I'd cut out dairy/casein and possibly soy and see if that helps before jumping in to a complicated elimination diet.

Good luck!

GottaSki Mentor

IMO

The cross-reactive theory is dangerous because it has some truth in it's basis. Yes, those with Celiac Disease often have difficulty with other foods either initially or that develop over time. Are there proteins within certain foods that tend to cause problems - YES. Are these 18 foods the only foods that have proteins that can be problematic - NO.

Putting another label on a group of foods simply adds confusion. There are groups of foods that someone with a damaged small intestine can be intolerant of: Dairy, Grains, Legumes and Nightshades (tomato, potato, peppers and eggplant), Eggs, Nuts, Seeds, Citrus and more. Picking a few foods from these groups and labeling them as the foods to avoid seems to confuse an already difficult puzzle to solve.

If you are new to gluten-free - the best advice is that which gets repeated frequently on this board. Eat whole foods, remove dairy, avoid eating out, etc. IF there is no improvement after months of following these rules it is time to look for other intolerance OR if you can identify a food that is causing symptoms - remove it for at least six months to a year - trial them - if the problem remains - remove and retrial in another six months or year intervals.

IF you can't identify any specific foods that are causing symptoms - a strict elimination diet is your best bet - Meat, vegetables and fruit. No dairy, grains, legumes, nightshades, eggs, nuts and seeds. Don't trial any of the eliminated foods for a month - then try one food at a time - not groups of foods - example: legumes - try soy than three or more days later try beans than three or more days later try peanuts. Keep a food log - make sure to note variations in energy levels and bathroom visits as well as obvious reactions - I think you'll be amazed at the information you discover.

Again, it is only my opinion but removing the 18 foods listed in the blog you referenced like a waste of time as far as elimination diets go. It also seems like it would be more difficult than removing ALL potential problems, just as removing all gluten was much tougher to adapt to than it was for me to eat strictly meat, vegies and fruit. With no labels to read the only difficulty is missing the foods you can't have. Just make sure you stock the fridge with lots of colorful vegies, a large variety of fruit and lots of nice cuts of meat -- once you cut all processed foods from the budget, meat doesn't seem as expensive because the overall food bill is lower.

Good luck - I know very well how frustrating it is to know that something is preventing your gut from healing and not being able to figure it out.

Archived

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

  • 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. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Second chance

    2. - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

    3. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Second chance

    4. - Scott Adams replied to elisejunker44's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Schar's products contain wheat!

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,603
    • Most Online (within 30 mins)
      7,748

    Dale S
    Newest Member
    Dale S
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jmartes71
      Current careteam is still up in the air about my celiac thanks to me googling "celiac specialist" what popped  up was once known as a good name hospital back in the days. I went in for answers for my declining health, it was the autoimmune part that did me in, being a former bus driver.I read that in my medical records so easily downplayed, i refused the gluten challenge! Why the hell would I eat Gluten when im Celiac coming to them for answers when my body is falling apart? Glutenfree since 1994. They did unnecessary colonoscopy KNOWING im glutenfree. A celiac specialist would know that would be pointless to do if not eating gluten and it was done!Im so angery with that hospital for not explaining celiac disease and withholding information, Downplaying my ailments , mental distress,  causing more health issues, ect. All this could have been avoided If medical records were sent, when asked, explained and done properly. Im so angery.I do have the celiac dietitian on here in June and linked her up to my current health care yesterday, fingers crossed hopefully with that, the understanding of celiac is explained it's not just a food allergy will be understood. 
    • Scott Adams
    • Scott Adams
      Thank you for sharing your experience, Florence. It’s important to clarify, though, that proteins like zein in corn, panicin in millet, and kafirin in sorghum are not considered gluten and have not been shown to trigger the same autoimmune intestinal damage seen in celiac disease. Some people with celiac disease do report symptoms with certain gluten-free grains, oats, or other foods, but that reflects individual intolerance or sensitivity—not a proven “gluten-mimic” effect that damages the small intestine. Certified gluten-free oats are considered safe for most people with celiac disease, though a small subset may react to avenin. If specific foods consistently cause symptoms for you, it makes sense to avoid them personally, but it’s helpful for readers to know that these foods are still medically classified as gluten-free and generally safe for the broader celiac community.
    • Scott Adams
      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable primary care provider and, when needed, a gastroenterologist or dietitian familiar with gluten-related disorders. Advocating for yourself is not unreasonable—it’s part of managing a chronic condition. If your current provider relationship isn’t working, it’s appropriate to seek care where you feel respected and properly supported.
    • Scott Adams
      I understand why that feels concerning. Some Schär products use specially processed wheat starch that has had the gluten removed to meet strict gluten-free standards (under 20 ppm in the U.S. and EU), which is why they can legally and safely be labeled “gluten free” for people with celiac disease. However, wheat must still be listed in the ingredients and allergen statement because it is derived from wheat, even though the gluten protein has been removed. For individuals with a true wheat allergy, these products are not appropriate—but for those with celiac disease, properly tested gluten-free wheat starch is considered safe under current medical guidelines. That said, it’s completely reasonable to prefer products made without wheat starch if that gives you greater confidence, and clearer front-of-package communication could certainly help reduce confusion for shoppers.
×
×
  • 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.