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

Do You Guys Get Your Gluten Symptoms For Other Intolerances, Or Different Symptoms?


AzizaRivers

Recommended Posts

AzizaRivers Apprentice

I'm wondering if those of you with other intolerances tend to get the same symptoms you get from gluten, or if you have a whole different set of symptoms for other things.

I have lately had a lot of canker sores (I have 4 right now) and I don't usually get those without it being food-related. I've been having mild stomach issues similar to my gluten ones, but on a much smaller scale. I'm not incapacitated like I would be if I was eating regular gluten food or anything, but I am uncomfortable. I do live in a mixed house (like with my partner's family so it's out of the question to ask everyone to change) but I am extremely careful. So it's possible I'm having CC, but I also wonder if maybe it's another intolerance. I've been gluten-free for almost a year now and I know it's common for new ones to show up 6-12 months after diagnosis and diet change.

I started a food diary this past week to log my symptoms along with whatever I ate. I guess if it's another intolerance that will help me figure it out. But if it's just CC from cookie sheets/pans (I don't have my own), crumbs, etc. then I won't know from that. If it is CC, I'm almost totally sure it's not from a product but rather from sharing the pots and pans, getting gluten crumbs near my food, and perhaps things like eating rice someone else has made, in which they used butter from the non-gluten-free butter dish.


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



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

I will get glutened symptoms from high fructose.

mushroom Proficient

Corn is the only intolerance that gives me gluten-type symptoms. The others are always rashes, hives, mostly skin-type things.

pricklypear1971 Community Regular

I haven't been doing this long enough to be certain, but strong salicylates (food preservatives, colors) give me "acid flashback" reactions, as well as my DH popping up. Then again, how can I be certain I didn't get glutened, too??

It's tough to figure out.

GlutenFreeManna Rising Star

Soy makes me fatigued and brain foggy in a similar way that gluten does but it doesn't give me any stomach issues or other neurological issues that I get with gluten so that is how I tell the difference.

dilettantesteph Collaborator

I think that I get different seeming symptoms from low level cc than I do from higher level cc. If I continue with that low level cc for longer, days or weeks, they symptoms develop into the high level cc ones.

I am also intolerant to oats and I can't tell my oat intolerance from my wheat intolerance, from the barley or rye one. Of course I don't know what is contaminated with what so how would I know?

bartfull Rising Star

Sounds like a lot of us are in the same boat - still trying to figure it all out. I'M not even sure I HAVE symptoms from gluten yet. I know that corn, and now almonds, make my psoriasis kick up. I know corn gives me insomnia. And although I didn't have much for digestive symptoms before starting the diet, SOMETHING is now bothering me that way too. It's going to take time, maybe a year or two, but I WILL get to the bottom of this. I WILL find a way to stay healthy. At this point, I really don't care WHAT I eat, as long as I don't go hungry. If they told me living on nothing but cardboard will heal what's wrong with me, I'd be happy to eat cardboard for the rest of my life.


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



Celiac.com Sponsor (A8-M):



AzizaRivers Apprentice

Hmm. Yeah, it sounds like many of us are in the same boat as me, or were and still don't have everything figured out. Thanks for sharing though, everyone. :)

missmellie Newbie

I'm wondering if those of you with other intolerances tend to get the same symptoms you get from gluten, or if you have a whole different set of symptoms for other things.

I have lately had a lot of canker sores (I have 4 right now) and I don't usually get those without it being food-related. I've been having mild stomach issues similar to my gluten ones, but on a much smaller scale. I'm not incapacitated like I would be if I was eating regular gluten food or anything, but I am uncomfortable. I do live in a mixed house (like with my partner's family so it's out of the question to ask everyone to change) but I am extremely careful. So it's possible I'm having CC, but I also wonder if maybe it's another intolerance. I've been gluten-free for almost a year now and I know it's common for new ones to show up 6-12 months after diagnosis and diet change.

I started a food diary this past week to log my symptoms along with whatever I ate. I guess if it's another intolerance that will help me figure it out. But if it's just CC from cookie sheets/pans (I don't have my own), crumbs, etc. then I won't know from that. If it is CC, I'm almost totally sure it's not from a product but rather from sharing the pots and pans, getting gluten crumbs near my food, and perhaps things like eating rice someone else has made, in which they used butter from the non-gluten-free butter dish.

My reaction is pretty much the same from everything on the "gotta avoid it" list. For me that includes gluten, dairy, soy, eggs, yeast, several spices, and turkey, and other things to a lesser extent. Even a hint of those things and it's a must to be close to a bathroom for several painful hours. So, it's not easy, but it's a must to be ever vigilant. Do you have GERD or other stomach acid issues? Those can cause canker sores, as can hormone imbalances. It does sound, though, like you have real CC problems.

wheeleezdryver Community Regular

My reaction to fructose is totally different than my reaction to gluten.

My noticable reactions to gluten are minor... my reactions to fructose are more noticeable, and more immedate (hours, where as my one main gluten reaction-- cold sores-- usually takes 1-4 days to appear)

Roda Rising Star

I get the same reaction from gluten free oats as I do gluten. I do believe it caused the gastritis and ulcer I had last year. I react to gluten free oat contamination in products also. I'm with dilettantsteph, I have slightly different reactions to low CC over time than if I overtly get a big dose of gluten all at once. Eventually the low level CC will add up and feel like a big gluten reaction.

BeFree Contributor

"If they told me living on nothing but cardboard will heal what's wrong with me, I'd be happy to eat cardboard for the rest of my life."

LOL that's how I feel...I just want to get better!

  • 2 weeks later...
Familytradition Rookie

Same boat here too! I need to post my numbers for my known food intolerances. I DO suspect tha I have others but havent been able to distinguish between them yet. It will be a long road. Does anyone else recommend igG testing to help identify food intolerances?

  • 2 weeks later...
Lori2 Contributor

I have lately had a lot of canker sores (I have 4 right now) and I don't usually get those without it being food-related.

My daughter had very bad canker sores, so bad, in fact, that her physician finally sent her to Mayo Clinic for a diagnosis. They were caused by iron mal-absorption. She has great difficulty getting her levels up. Her celiac panel was negative at that time--she should probably be retested.

Since iron mal-absorption is another celiac symptom, it may improve as you heal. However, I would get tested and add a supplement if needed.

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. - trents replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

    2. - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

    3. - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

    4. - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

    5. - Scott Adams replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

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

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748

    lalan45
    Newest Member
    lalan45
    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

    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune response that attacks the nervous system, leading to symptoms precisely like yours—loss of coordination, muscle weakness, fasciculations, and even numbness. The reaction you had from inhaling flour is a powerful testament to your extreme sensitivity. While celiac disease is commonly tested, non-celiac gluten sensitivity with neurological involvement is harder to diagnose, especially since many standard tests require ongoing gluten consumption, which you rightly fear could be dangerous. Seeking out a neurologist or gastroenterologist familiar with gluten-related disorders, or consulting a specialist at a major celiac research center, could provide more validation and possibly explore diagnostic options like specific antibody tests (e.g., anti-gliadin or transglutaminase 6 antibodies) that don't always require a gluten challenge. You are not alone; many individuals with severe reactivity navigate a world of invisible illness where their strict avoidance is a medical necessity, not a choice. Trust your body's signals—it has given you the most important diagnosis already.
×
×
  • 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.