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

Used to be super sensitive- and now not?

Carah

By Carah
in Super Sensitive People

Recommended Posts

Carah Newbie
Carah
Posted

Hey everyone! New poster here (have been stalking the forum for years!)

I was diagnosed 6 years ago. Back then I was super sensitive.  I would react from most restaurants and eating at other people's home. I had to get new pots/pans etc. So needless to say for the first 3-4 years I ate almost exclusively at home because I lived in fear. But as you all know, life changes. I got divorced. I started dating. I went on my first date in YEARS and we went out to a restaurant I knew and could eat at (he was totally clueless to that fact). After dinner we went to a bar ... and he ordered french fries. Normally I wouldn't eat anything from a shared fryer, but I felt pressure to be "normal" and so I ate those fries, knowing I would probably get sick. But the weird thing is- I didn't. It has been about year of me eating at places I wouldn't even dream of years ago- and I haven't gotten sick nearly as many times I used to. Now I know, I shouldn't be eating these things and I do keep a limit on it. I am not outright eating anything with gluten in the ingredients but I am eating at places I would think have high cross contamination risks. 

 

 Just wondering- has anyone else gone from super sensitive to not as sensitive? Or have experienced a lessening in their symptoms with their gluten attacks? I used to have attacks that would last almost an entire day accompanied by a whole week worth of various symptoms. Now its just as if I ate something that didn't agree with me and feeling a little under the weather after wards. 

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

Celiac.com Sponsor (A8-M):


Posterboy Mentor
Posterboy
Posted
1 hour ago, Carah said:

Hey everyone! New poster here (have been stalking the forum for years!)

I was diagnosed 6 years ago. Back then I was super sensitive.  I would react from most restaurants and eating at other people's home. I had to get new pots/pans etc. So needless to say for the first 3-4 years I ate almost exclusively at home because I lived in fear. But as you all know, life changes. I got divorced. I started dating. I went on my first date in YEARS and we went out to a restaurant I knew and could eat at (he was totally clueless to that fact). After dinner we went to a bar ... and he ordered french fries. Normally I wouldn't eat anything from a shared fryer, but I felt pressure to be "normal" and so I ate those fries, knowing I would probably get sick. But the weird thing is- I didn't. It has been about year of me eating at places I wouldn't even dream of years ago- and I haven't gotten sick nearly as many times I used to. Now I know, I shouldn't be eating these things and I do keep a limit on it. I am not outright eating anything with gluten in the ingredients but I am eating at places I would think have high cross contamination risks. 

 

 Just wondering- has anyone else gone from super sensitive to not as sensitive? Or have experienced a lessening in their symptoms with their gluten attacks? I used to have attacks that would last almost an entire day accompanied by a whole week worth of various symptoms. Now its just as if I ate something that didn't agree with me and feeling a little under the weather after wards. 

Carah,

I think I am in that category.

see my blog post where I discuss my experience and asked the same question "It has been 4 years is it now safe to eat gluten again"

I think our stomach acid protects us against many of the foods/proteins we eat and when it is too low our autoimmune system gets activated.  70% of our immune is in the small intestine so it makes sense this is where we would first react to proteins/virus especially if our defenses are low.

There is a great discussion today about new research that indicates that possibly a virus could of triggered our immune response first to react to gluten then after that our bodies constantly react to gluten but this give us hope that someday celiac's might be able to eat gluten if we can reset our immune system.

I am glad to see your reactions are only minor in nature now but know you might be in the silent phase of the disease. 

You may be in the NCGS phase.

This article explains well (I think) what the differences are between what it means to be an NCGS candidate or a Celiac disease candidate.

Open Original Shared Link

but simply stated your immune response is triggered in the NCGS phase until the Villi becomes flattened in the formal Celiac disease diagnosis stage but they really are the same disease in different stages/phase triggered by the the body mistakenly attacking the gluten for a virus.

It sounds like you might be in the NCGS phase now. . . because as the article notes the treatment for each NCGS or Celiac disease is the same and both disease/phases get better/improve after 6 months of being gluten free.

More study is needed on this topic but in theory if your immune system resets itself  after a certain period of time say 6 months as this article notes who knows someday they might be able give us a vaccine for gluten.

quoting

"The new study also found that it took about six months of a completely gluten-free diet for symptoms to subside." and sounds like what you might be noticing/describing.

I would also recommend this thread where some of these same issues are discussed.

****this is not medical advice

 I hope this is helpful.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. 

posterboy,

cyclinglady Grand Master
cyclinglady
Posted

Here is my take.  First, were you correctly diagnosed?  Do you have all the lab results?  Second, celiac disease issues can wax and wane.  I have had two glutenings since my diagnosis four years ago.  Each time was so different that I had to ask my GI to check my antibodies to confirm.  The only consistent thing was the long recovery.  Did I mention that I was accidentally diagnosed by my GI during a consult for a routine colonoscopy?  At the time I had no GI symptoms.  I was very anemic, but I was going through menopause and I already had a genetic anemia.  My GI suspected celiac disease and he was right.   Third, when was your last antibodies test?  This should be done annually.  

Open Original Shared Link

You might just have just evolved into a silent celiac.  

I hope you figure it out!  

kareng Grand Master
kareng
Posted

Celiac disease does not go away.  Once you are healed, there are a lot of reasons why your reactions may be lighter or appear non-existent.  

- it may take multiple exposures for your body  to produce enough antibodies to start a reaction

- a healed gut may be able to handle a small amount of antibody "attack"

-some people have a higher tolerance for pain/symptoms

-you may not recognize something as a result of gluten - for example a headache/migraine

 

Continued exposures to gluten will result in damage, even if you think you are not feeling it.

 

NOw if you don't actually have Celiac - you may have fixed whatever the issue was or its a FODMAPS issue and, as long as your total FODMAP is low, a small amount of a high FODMAP food (wheat) is fine.

Archived

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

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


  • Member Statistics

    • Total Members
      129,980
    • Most Online (within 30 mins)
      7,748
    mary lou grolimond olson
    Newest Member
    mary lou grolimond olson
    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

    • Scott Adams
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By Scott Adams · Posted

      It sounds like your gastroenterologist is becoming increasingly confident that celiac disease is the likely diagnosis based on both your older and newer lab results. Her suggestion to call each Monday for possible cancellations is actually a great strategy—especially given how long the wait is until your August 29th appointment. It’s also a good sign that she’s advocating for you to be seen sooner, which shows she’s taking your case seriously. The fact that some labs might not have been drawn yet due to overlap with your functional health doctor’s upcoming testing adds a layer of confusion, but that’s unfortunately common when multiple providers are involved. Hopefully, the GI’s remaining labs will still get processed, or she can reorder them if needed. As for the colonoscopy prep, it’s totally understandable that you're dreading it—many people rank it among the least pleasant medical experiences. You’re definitely not alone in preferring the pill prep option over the liquid kind, especially if you don’t drink Gatorade and had a rough experience with Miralax in the past. Hopefully, your doctor will approve the pill form, especially since you’ve tolerated other options poorly before. Fortunately, the upper endoscopy doesn’t require any bowel prep—just fasting, usually starting the night before—so that part should be easier to handle. It’s great that you’re already trying to boost your gluten intake, but yes, tracking gluten content can be surprisingly tricky. You’re right that the general rule for wheat-based products is to multiply the protein content by about 0.75 to estimate the gluten content. That means foods like oyster crackers, while convenient, may not pack enough gluten to help reach the recommended daily goal of around 10 grams before biopsy. It’s helpful that you caught that early, and switching to more gluten-dense foods like regular wheat bread, pasta, or wheat cereals might make it easier to hit your target. It’s not easy eating more gluten when you’re trying to manage symptoms or just not used to it, but doing so can make a big difference in ensuring your biopsies are accurate. You’re on the right track—hopefully with a little luck, you’ll get a cancellation and be seen sooner.
    • cristiana
      Worried about being isolated

      By cristiana · Posted

      Thanks for sharing that film, @trents.  I am not sure how I missed that film as I see it is a few years old, but it is very good.  I think you should be fine if you take your own packed lunch and eat it from your own lunchbox etc.  Might be worth doing a lunchtime recce to see how cramped the room is before making a decision - for all you know, there may be other people  there who don't eat gluten?
    • cameo674
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By cameo674 · Posted

      The GI doc messaged me this afternoon that she believes that the new blood work added to the old is definitely  looking like a celiac diagnosis is in my future.  She wants to me to call into scheduling each Monday to see if I can get my August 29th appointment moved up due to cancellations.  I have never had a doctor recommend that.  She also said there were additional labs that she requested still out that have not come back yet; so, they may have been missed drawing those since the functional health doctor has a whole slew of labs that I am suppose to be waiting until August 27th to do. I am still waiting to hear on whether or not she will allow me to do pill prep versus the typical gatorade prep that I did 8 years ago for that colonoscopy.  I do not drink gatorade to begin with and that miralax prep kept me in the bathroom up until we drove to the procedure.  My younger brother said the pill form was fairly easy when the liquid form is hard to swallow. Colonoscopy prep is definitely close to number one on the list of things I never want to experience again if I could avoid it.  Number one is a different medication that caused severe cramping that had me in tears until it wore off.  Never having had an endoscopy, I have no idea of what that prep is like, but it cannot be worse right? I started munching on oyster crackers last night.  It is shocking how filling they are.  I just read that I need to pay attention to the protein content of the wheat bread product or I will miss the gluten goal of 10 g per day prior to testing.  The post said that I should look at the protein and multiple that number by .75 if it is a wheat flour product to see how much gluten is in it.  No more oyster crackers for me.  I would have to eat 10 oz bag everyday to meet my goal.  not going to happen.
    • Alibu
      Latent celiac, need to go gluten free, advice on kitchen "reset?"

      By Alibu · Posted

      Well, I've made if from the pre-diagnosis forum to here!  I've been diagnosed with "latent" or "potential" celiac and my doctor has suggested me to go gluten-free before my appointment with him in October (first available, LOL).  My ttg-iga was 152, my EMA was positive, I have the gene, but my biopsy was negative (and he took 12 samples), so it makes sense to go gluten free to see if I improve. I know the basics - I can find lists of things to avoid, I know about hidden dangers, etc. all of that.  Where I'm struggling is just STARTING.  I need to go shopping and stock up on some staples.  My goal is to not try to find gluten-free alternatives, but to focus on naturally gluten-free foods like proteins, veggies, fruits, and carbs like potatoes and rice.  However, the rest of the household will not be gluten-free, which is fine, I don't want them to for various reasons.  But I have SO much food in my house in the pantry and fridge and cabinets, and it feels like I need to get rid of a lot in order for me to start fresh, but at the same time, I can't get rid of everything. I guess it's just feeling overwhelming and I've never given up gluten before so this is going to be a huge shift for me and I feel like I need SPACE, but I can't quite have that. Any advice on just getting started and organizing myself would be great!  
    • Scott Adams
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By Scott Adams · Posted

      It’s great that you were finally able to see a gastroenterologist—and even luckier to get in the same day as your referral! It sounds like your GI is taking a very thorough approach, which is reassuring given your complex symptoms and history. The confusion around your different tissue transglutaminase (tTG) antibody results is understandable. The variation between your December and June labs may be due to multiple factors, including differences in the lab performing the test (Quest vs. Mayo Clinic), the specific assay used, and the amount of gluten you had been consuming before each test. Antibody levels can drop significantly when gluten is reduced or eliminated from the diet, even partially, which might explain why your recent tTG IgA was now negative and your tTG IgG was borderline high. That’s likely why your GI mentioned it was “usually the reverse”—typically, tTG IgA is more commonly elevated in confirmed celiac, not IgG alone, especially when IgA levels are sufficient, as yours are. Your gene testing confirms that you carry HLA types (DQ2.2 most likely) that are permissive for celiac disease, meaning you can develop it, but not everyone with these genes will. These genes don’t explain why your symptoms are milder or different from others with celiac—many people have so-called "silent" or atypical presentations like yours, with issues like long-term heartburn, loose stools, nutrient intolerances, or just gradually adapting to symptoms over time. It’s not uncommon to assume these symptoms are just aging, medication side effects, or lifestyle-related until someone finally connects the dots. It’s a good thing your daughter advocated for you to be tested—many cases are missed for years because they don’t follow the “textbook” presentation. As for the immunoglobulin tests, your doctor likely ordered those to ensure your immune system is functioning normally, particularly your IgA level, since a deficiency can cause false-negative celiac blood tests. Since your IgA level is normal, your tTG IgA test should be reliable (assuming adequate gluten intake), but again, if you weren't eating enough gluten, that could explain the lower antibody levels now. The comprehensive metabolic panel and negative stool parasite results are additional pieces ruling out other causes of your symptoms, like infections or organ dysfunction. The upcoming endoscopy and colonoscopy should provide more definitive answers, especially with biopsies looking for celiac disease, eosinophilic esophagitis, and microscopic colitis. It’s completely valid to feel unsure about what you’re experiencing, especially when your symptoms have been lifelong or gradually worsening without being severe. You’re not alone—many adults with celiac or gluten-related disorders report subtle or chronic symptoms they’ve normalized. You’re doing the right thing by staying on gluten now through your procedure date in August. Try not to stress about reaching the full 6-slice equivalent each day, but do increase your gluten intake as much as tolerable (e.g., a couple of pieces of bread, pasta, crackers, etc.) to give the biopsy the best chance of detecting any damage. Good luck with your upcoming procedures—you’re closer than ever to answers and a clearer direction forward.
×
×
  • Create New...