Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 I Have A Sensitivity


valeriek

Recommended Posts

valeriek Apprentice

Hi

I never new I had celiacs. I went for an annual physical and my blood work came back and I wasnt absorbing vitamins. So i went to GI and was diagnosed after endoscopy.

So here is what I am wondering...I know not to eat gluten and I dont at all. But do i really have to worry about getting sick if I actually do eat some accidently? And what kind of sick do people get from eating it. I dont understand. So I assume I donnot have a sensitivity I just cant eat it because of the vitamin issue. So if I do get some some how I wont get sick....right?

I really need to know the answer to this. My Dr cant even answer it.

Thanks


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



Celiac.com Sponsor (A8-M):



lizard00 Enthusiast

As you know, it's very possible to be asymptomatic and have celiac, although I wouldn't consider you that... since you posted about nausea, that could be your symptom.

Either way, peoples sensitivity levels do vary, and what might make me sick may not bother another. You may be CC'd and not know it. That can be both a blessing and a curse, because if you don't know you have been glutened, it can make it harder to be as strict as is necessary. So, you may or may not actually feel the physical effects of eating gluten. But, just remember that even though you may not feel it, doesn't mean there isn't a reaction occurring.

I've also heard that some people become more sensitive to gluten the longer they are gluten-free, while others tend to become less sensitive as times goes on. There are a lot of mysteries to this disease.

SalmonNationWoman Newbie

Yes, you should be concerned about accidental exposures. While everybody responds differently to this kind of scenario, I don't know any Celiac/Gluten-Intolerant person that doesn't have some sort of symptoms that lets them know they've been exposed.

Most people at time of diagnosis don't have the classic Celiac symptoms and often present with only one, seeemingly unrelated problem like anemia, vitamin deficiencies, acid reflux, osteoporosis, cognitive delay, dermatitis (Dermatitis Herpetiformis and others) and even misdiagnoses like Fibromyalgia and Chronic Fatigue Symdrome.

You need to read your body and determine what sensations and symptoms indicate to you that you may ahve been accidentally exposed. I didn't have hardly any GI symptoms when I went gluten-free but some recent exposures had me in bed for several days with severe adominal pain, indicating I've become more sensitive as I've "cleaned up" my act.

What I've reconciled myself with is that the "normal" world is pretty inhospitable to those with gluten intolerance and food allergies. Social circles and family can be the toughest to deal with during the early stages of this lifestyle. Be prepared for old aquaintances to drift away and to make new friends that better understand your needs.

valeriek Apprentice

I need more answers please

sbj Rookie
I never new I had celiacs. I went for an annual physical and my blood work came back and I wasnt absorbing vitamins. So i went to GI and was diagnosed after endoscopy. So here is what I am wondering...I know not to eat gluten and I dont at all. But do i really have to worry about getting sick if I actually do eat some accidently? And what kind of sick do people get from eating it. I dont understand. So I assume I donnot have a sensitivity I just cant eat it because of the vitamin issue. So if I do get some some how I wont get sick....right? I really need to know the answer to this. My Dr cant even answer it.

I never knew I had celiac disease, either. I got diagnosed via endoscopy when the doctors were looking for something else. I had no symptoms. I have been gluten free for 6 months (I believe) and I can think of one time when I for sure ate gluten. Even then I did not suffer with any symptoms. I cannot tell if I am getting cross contamination. The only way I will know if I am being successful with my diet is by bloodwork.

So . . . do you have to worry about getting sick? Well, I don't but you could be different.

elye Community Regular
I never knew I had celiac disease, either. I got diagnosed via endoscopy when the doctors were looking for something else. I had no symptoms. I have been gluten free for 6 months (I believe) and I can think of one time when I for sure ate gluten. Even then I did not suffer with any symptoms. I cannot tell if I am getting cross contamination. The only way I will know if I am being successful with my diet is by bloodwork.

So . . . do you have to worry about getting sick? Well, I don't but you could be different.

Just curious, sbj -- how long have you been gluten-free? I was diagnosed four years ago, a diagnosis right out of left field. I had no symptoms, with the exception of low iron. It took over six months for me to start noticing symptoms when I accidentally consumed gluten, and at first they were not heavy-duty. Then, once I was at a year gluten-free, I was (and have been ever since) experiencing the classic symptoms when I was cross-contaminated, very noticeable: cramps, bloating, D.

Valerie, you need to stay away from gluten because it causes your immune system to launch an inappropriate attack on the protein. The antibodies can damage every organ in the body, including the brain, skin, liver, pancreas. . . .....not to mention the obvious damage it will do to your lower intestine. Cancer can result. You've come to the right place for support and advice! :)

sbj Rookie
Just curious, sbj -- how long have you been gluten-free? I was diagnosed four years ago, a diagnosis right out of left field. I had no symptoms, with the exception of low iron. It took over six months for me to start noticing symptoms when I accidentally consumed gluten, and at first they were not heavy-duty. Then, once I was at a year gluten-free, I was (and have been ever since) experiencing the classic symptoms when I was cross-contaminated, very noticeable: cramps, bloating, D.

I'm gluten free for a mere six months now, near as I can remember. So I'm just a baby at this! I realize that many have noticed their sensitivity to gluten increasing with time as they remain gluten free. So far that is not the case with me but who knows what the future will bring? I know that some people can become suddenly sensitive to gluten after only being gluten free for a couple of weeks! That certainly did not happen to me. In a way I am hoping that I do become more sensitive so that I can recognize cross contamination - but nothing so far. Right now it's just a toss of the dice. I'm avoiding gluten as best I can but there is the chance that I am getting CC. I have no way to know other than bloodwork.


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,655
    • Most Online (within 30 mins)
      7,748

    mcarrigan1958
    Newest Member
    mcarrigan1958
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Good idea, @LynnM! That would be helpful to other celiacs who find themselves on the more sensitive end of the spectrum. You might also want to send them information about how to initiate the process with GFCO. But just a word of caution here, don't be surprised if the company is reluctant to pursue this certification as it can tie their hands with regard to changes in formulation in the future. Manufacturers often make ingredient decisions not only based on desired product outcomes but on cost factors. It can also put them at a liability risk should some ingredient supplier introduce an ingredient that was cross-contaminated with gluten without knowledge and cause someone to have a reaction. Testing for gluten-free certification is not done as frequently as consumers imagine and products can and do get out of spec at times. And once you slap a gluten-free certified label on a product, you are instantly open to possible liable suites. 
    • LynnM
      Hi Everyone. I just heard back from my son's GI doc and nutritionist. SHIELD products ARE gluten free. I am going to ask the company to Pursue gluten-free certification. 
    • Scott Adams
      Your experience highlights a common frustration in celiac disease diagnosis—discrepancies between lab results, biopsy findings, and clinical symptoms. The "localized mild nodular mucosa" noted in your duodenal bulb could indeed be significant, even if the overall pathology was deemed negative. Nodularity in the duodenum is often associated with lymphocytic infiltration, a feature seen in early celiac disease (before villous atrophy develops) or in conditions like H. pylori infection, chronic inflammation, or even food sensitivities (e.g., gluten or dairy). Since you had strongly positive celiac labs (e.g., TTG-IgA, EMA, or DGP), this nodularity might reflect an early or patchy immune response to gluten that wasn’t severe enough to meet traditional biopsy criteria (Marsh 3 damage). Some studies suggest nodular mucosa can precede classic celiac changes, especially in seropositive patients. Given your lab results and symptoms, it’s possible you have non-celiac gluten sensitivity (NCGS) or are in an early stage of celiac where damage isn’t yet widespread. False-negative biopsies aren’t uncommon due to sampling error (celiac can be patchy) or misinterpretation of subtle changes. If you’re still symptomatic, you might discuss repeat testing (e.g., HLA-DQ typing if not already done, or a gluten challenge with both serology and biopsy) or consider a capsule endoscopy, which can visualize more of the small intestine. Alternatively, H. pylori testing or a trial of strict gluten-free diet with symptom monitoring could provide clarity. Your case underscores the importance of correlating labs, histology, and clinical response—not just relying on biopsy alone. A second opinion from a celiac-savvy GI could be worthwhile!
    • Scott Adams
      The burning sensation you describe—particularly upon waking or after exercise—could indeed be related to systemic inflammation, which is common in autoimmune conditions like Hashimoto's and celiac disease. Gluten exposure, even in small amounts, may trigger an immune response that exacerbates inflammation, leading to the achiness and burning you feel, especially in areas like your hips and chest. Stress and poor sleep can further worsen inflammation, creating a cyclical effect. The fact that these symptoms improved before your gluten challenge but returned afterward strongly suggests a connection to gluten sensitivity. Additionally, prolonged immobility during sleep might contribute to stiffness or discomfort, but the burning sensation points more toward an inflammatory or neurological component. Your heightened food sensitivities and digestive issues could indicate ongoing gut dysfunction, possibly due to intestinal permeability ("leaky gut") from gluten exposure or autoimmune activity. Since exercise also triggers symptoms (except during your remission period), it may be worth exploring gentle movement like yoga or walking to avoid overexertion while supporting circulation. Consulting a healthcare provider familiar with autoimmune conditions—particularly one who can guide you through targeted testing for celiac (without a full gluten challenge) or assess for other triggers like histamine intolerance—might help clarify next steps. In the meantime, prioritizing anti-inflammatory foods, stress management, and restorative sleep could provide some relief.
    • Scott Adams
      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:    
×
×
  • Create New...