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

Sensitivity


sunblazed

Recommended Posts

sunblazed Apprentice

Hello

 

I was diagnosed Celiac (biopsy + blood) last Wednesday. Apologies if this has been raised before.

One question I have is with regards to what many posters call being 'glutened'..

I have been a silent sufferer of celiac I assume for a long time, since my symptoms  (nausea, loose pale stools, tiredness) only became chronic in th past few months.

Anyway, I cannot remember a time ever of feeling ill directly after eating any gluten products. My symptoms are chronic so whether I ate gluten or not was largely irrelevant.

Now, I have been gluten free only since Saturday and of course plan to stay that way, but one question that bugs me and which I'd like some opinions on is should I accidentally become glutened could I become ill or is this really something which affects all of us differently?

I did ask the gastro specialist the same question and he gave me a clear NO but it would set me back and cause probable intestinal damage again temporarily.

A bit of my concern around this comes due to the fact I am travelling to Cyprus in 3 weeks for a summer vacation which we booked months before all of this kicked off and we have an all inclusive arrangement so I will need to be extra vigilant for cross contamination etc.

Thanks for your opinions.

 

 


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

You were no longer a silent celiac when you went for testing. Chances are good, IMHO, that if you get glutened those symptoms will return. Do be aware that symptoms can be delayed and it isn't always the last thing we ate that makes us ill. It could be something from as long as a few days before. 

Try and stay as safe as you can on your trip and perhaps take some Immodium with you just in case. That may at least help the D.

cyclinglady Grand Master

I had no noticeable symptoms at the time of my diagnosis. I was in for a routine colonoscopy and during my GI consult my doctor said that he thought I had celiac disease based on my life-long anemia (I already had a genetic anemia). I was shocked! I had no tummy issues. Three months after my diagnosis, I was dealing with fractures due to osteoporosis (silent symptom of celiac disease). I also developed some intestinal issues because during the time between my blood test and endoscopy, I ate a loaf of sourdough daily! Along with everything gluteny thing possible (a fond farewell but I would not recommend doing that based on what I know now).

I had moderate to severe damage per my biopsy reports.

But...you do have that vacation coming up. It is up to you. By eating gluten free for the next three weeks, if you ingest gluten, you just might get a pretty severe reaction -- or not. Everyone is different. So, you might put off the gluten-free diet until after your vacation or follow the advice of your doctor and avoid gluten staring NOW! Print off gluten-free restaurant cards (available in most languages). It can be done!

Best wishes!

sunblazed Apprentice

I had no noticeable symptoms at the time of my diagnosis. I was in for a routine colonoscopy and during my GI consult my doctor said that he thought I had celiac disease based on my life-long anemia (I already had a genetic anemia). I was shocked! I had no tummy issues. Three months after my diagnosis, I was dealing with fractures due to osteoporosis (silent symptom of celiac disease). I also developed some intestinal issues because during the time between my blood test and endoscopy, I ate a loaf of sourdough daily! Along with everything gluteny thing possible (a fond farewell but I would not recommend doing that based on what I know now).

I had moderate to severe damage per my biopsy reports.

But...you do have that vacation coming up. It is up to you. By eating gluten free for the next three weeks, if you ingest gluten, you just might get a pretty severe reaction -- or not. Everyone is different. So, you might put off the gluten-free diet until after your vacation or follow the advice of your doctor and avoid gluten staring NOW! Print off gluten-free restaurant cards (available in most languages). It can be done!

Best wishes!

Thanks! I started in fact Saturday and don't want to stop now. I'll just have to deal with it. I called the hotel in advance and they said they will let me speak with the chef on arrival. Their should be enough to choose from, I figured it's probably necessary to confront this head on. I cannot eat at home every day for the rest of my life.

bartfull Rising Star

And do read the newbie 101 thread in the coping section so you will know how to avoid cross-contamination - AND be able to explain it to those chefs.

nvsmom Community Regular

Bring some snacks along too.  Lara bars and the like are nice to have in your bag if you are out and about and miss a meal.

 

Everyone reacts differently.  Some silent celiacs keep their silent symptoms only, and they need to be EXTRA careful because their bodies won't tell them when they have been exposed.  Others find that the symptoms of being glutened become more noticeable once their state of chronic poor health is gone... It's hard to notice feeling sick when you are sick all of the time, right?  ;)

 

have a great trip!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,705
    • Most Online (within 30 mins)
      7,748

    Lyana Chahine
    Newest Member
    Lyana Chahine
    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

    • Gigi2025
      Hi Christiana, Many thanks for your response.  Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless).  I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his dad's family), but parents continue to think he's just being difficult.  Argh.  There's a test I took that diagnosed gluten sensitivity in 2014 via Entero Labs, and am planning on having done again.  Truth be told, I'm hoping it's the bromine/additives/preservatives as I miss breads and pastas terribly when home here in the states!  Be well and here's to our guts healing ❤️
    • Wends
      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
    • deanna1ynne
      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
    • deanna1ynne
      The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear positive result this time, just for her sake.  
    • Wends
      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
×
×
  • 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.