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

Am I Playing With Fire?

jasonD2

Recommended Posts

jasonD2 Experienced
jasonD2
Posted

I have been off gluten since 07 and at first was super strict and it made me absolutely paranoid and I hated life, so I decided to toss caution in the wind and go back to eating out and my life has been great again. I am still SUPER careful when I dine at restaurants but I just dont obsess the way I used to. Thing is, can I still be harming myself? i never had a positive celiac diagnosis and my blood tests and biopsies came back negative, but my stool anti gliadin tests were positive and I carry 1 of the 2 celiac genes. My mother is negative for both celiac and the genes but her stool tests were positive and she seems to do fine on gluten, even though I think she would benefit from eliminating it from her diet but shes stubborn.

After all these years I still dont know what I really have but I do know that I do ok most of the time when eating out. I often dont even inform my waiter of my sensitivity and just order and eat carefully and am fine

So the other day at Thanksgiving I accidentally ate gravy that had flour in it. I shouldve asked the host but it looked so liquidy that i didnt think there could possibly be any flour in there..well i was wrong. Minutes after eating I developed major bloating and was uncomfortable the rest of the night, however the next day I felt completely fine. So obviously my body still doesnt like gluten but my question is could this be celiac or just gluten intolerance? also since my body has not had gluten in a long time could this reaction have been my GI going into "defense mode"? While I felt very bloated I wasnt really very gassy...just kinda felt like my GI seized up and was being squeezed.

So i guess my question is should i just keep being careful or do i really need to be super strict again?

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

eh, just avoid it imo. I'm as strict as i can be, but for part of the year i live with gluten eaters... there are times when i wonder if i accidently cc'd myself. I don't have major symptomes like some of the others (the big one is "C" and axiety), so sometimes its hard to tell.

burdee Enthusiast
burdee
Posted

I have been off gluten since 07 and at first was super strict and it made me absolutely paranoid and I hated life, so I decided to toss caution in the wind and go back to eating out and my life has been great again. I am still SUPER careful when I dine at restaurants but I just dont obsess the way I used to. Thing is, can I still be harming myself? i never had a positive celiac diagnosis and my blood tests and biopsies came back negative, but my stool anti gliadin tests were positive and I carry 1 of the 2 celiac genes. My mother is negative for both celiac and the genes but her stool tests were positive and she seems to do fine on gluten, even though I think she would benefit from eliminating it from her diet but shes stubborn.

After all these years I still dont know what I really have but I do know that I do ok most of the time when eating out. I often dont even inform my waiter of my sensitivity and just order and eat carefully and am fine

So the other day at Thanksgiving I accidentally ate gravy that had flour in it. I shouldve asked the host but it looked so liquidy that i didnt think there could possibly be any flour in there..well i was wrong. Minutes after eating I developed major bloating and was uncomfortable the rest of the night, however the next day I felt completely fine. So obviously my body still doesnt like gluten but my question is could this be celiac or just gluten intolerance? also since my body has not had gluten in a long time could this reaction have been my GI going into "defense mode"? While I felt very bloated I wasnt really very gassy...just kinda felt like my GI seized up and was being squeezed.

So i guess my question is should i just keep being careful or do i really need to be super strict again?

Whether you call it gluten intolerance or celiac disease (evidenced by flattened villi), obviously gluten still damages your body. I also was diagnosed only by stool antigliadin and celiac gene test. However I figured out that gluten causes me pain and bloating, I will still avoid it as best I can. Same with my 6 other delayed reaction food allergies. I occasionally make mistakes ... I trust a product which was previously safe (and then changed their ingredients to add my allergen) or I eat a buffet dish which was adjacent to a dish with my allergens (and I get contaminated from my 'safe' dish). I always get obvious reactions, even with small mistakes. So I continue to avoid gluten (and my other 6 allergens). I don't need to impress anyone by eating foods that cause painful symptoms. If anyone is offended by my carefulness, that's their problem. Everybody avoids some foods, whether for medical restrictions, caloric value or just plain personal taste preference. Make your health a priority no matter what. It's difficult to be sociable when you feel crappy.

GFinDC Veteran
GFinDC
Posted

Hi Jason,

You may not have seen this new research that was done this year. It confirms the existence of a non-celiac wheat reaction in some people. They seem to have identified 2 separate conditions in fact. One with celiac like symptoms and another with allergy like symptoms. Right now there is no informaton on the long term effects of these conditions.

Non-celiac wheat sensitivity article

https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Archived

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

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


  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748
    dcarter1682
    Newest Member
    dcarter1682
    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

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.