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. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    2. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

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

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    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

    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.