Jump to content
  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Does Gluten Reaction Worsen; The Longer You're Away From It?


Ivanna44

Recommended Posts

Ivanna44 Apprentice

Hi all,

I just wondered if gluten reactions, worsen the longer you are away from it. I accidently gluttened myself tonight. Ate some crackers, that I assumed were gluten-free . :(

I had gotten these rice crackers before (same company) but the first box I got clearly said gluten-free on the box front. Hot-Kid Want-Want Rice crackers. I got a box of their "smoky bacon" ones the 2nd time. It turns out they had soy sauce in them, and clearly said "wheat" on the label. I feel like such an idiot for not reading the label and just assuming as it the same brand, that it would be gluten-free . :(

The company's Super Slim version of the rice crackers; are gluten-free or so the package says on the front. However, in hindsight, I wonder if the product even the so called gluten-free ones, are 100% gluten-free , as they would be manufactured in a place that is not 100% gluten-free . I will most likely not get that brand again.

Anyhow, within 10 minutes of eating those gluttened crackers. My stomach started up again. It was really acidy for 3 hours, before I was able to go bathroom. It still even now at 6 hours later, it is still upset. I'm getting the odd ulcer type sharp pains, which I have not had in a while. Since the Italian bread, experiment a couple of weeks back.

I wondered if gluten reactions worsen over time. The first time I purposely gluttened myself (this time was accidently) I did not feel the effects till 2 hours later. This time it was within 10 minutes. I also wonder if others have experienced an increase in nasal mucus. One other thing I tend to notice is it will be like I suddenly have a cold, I'll get all stuffed up, and have to blow my nose a lot. No one else in my house has a cold. I do tend to notice the nasal mucus when I've consumed gluten (accidently or otherwise, it is like my first indicator, that I ate gluten) Has anyone else experienced this? Just curious. I read at one site, The Gluten Connection, that asthama in some people is connected to gluten.

thanks


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



Celiac.com Sponsor (A8-M):



YoloGx Rookie
Hi all,

I just wondered if gluten reactions, worsen the longer you are away from it. I accidently gluttened myself tonight. Ate some crackers, that I assumed were gluten-free . :(

I had gotten these rice crackers before (same company) but the first box I got clearly said gluten-free on the box front. Hot-Kid Want-Want Rice crackers. I got a box of their "smoky bacon" ones the 2nd time. It turns out they had soy sauce in them, and clearly said "wheat" on the label. I feel like such an idiot for not reading the label and just assuming as it the same brand, that it would be gluten-free . :(

The company's Super Slim version of the rice crackers; are gluten-free or so the package says on the front. However, in hindsight, I wonder if the product even the so called gluten-free ones, are 100% gluten-free , as they would be manufactured in a place that is not 100% gluten-free . I will most likely not get that brand again.

Anyhow, within 10 minutes of eating those gluttened crackers. My stomach started up again. It was really acidy for 3 hours, before I was able to go bathroom. It still even now at 6 hours later, it is still upset. I'm getting the odd ulcer type sharp pains, which I have not had in a while. Since the Italian bread, experiment a couple of weeks back.

I wondered if gluten reactions worsen over time. The first time I purposely gluttened myself (this time was accidently) I did not feel the effects till 2 hours later. This time it was within 10 minutes. I also wonder if others have experienced an increase in nasal mucus. One other thing I tend to notice is it will be like I suddenly have a cold, I'll get all stuffed up, and have to blow my nose a lot. No one else in my house has a cold. I do tend to notice the nasal mucus when I've consumed gluten (accidently or otherwise, it is like my first indicator, that I ate gluten) Has anyone else experienced this? Just curious. I read at one site, The Gluten Connection, that asthama in some people is connected to gluten.

thanks

Yes this happened to me too with a similar product. Nasal congestion yes, and feelings of acidity plus headache and muscle aches. The next few times I even got shooting D! I now try to avoid any possible contamination situation just because it got to be so awful and I got sick these last 2 months!! from lowered resistance afterwards.. So take a word of caution here.

Sorry you are going through this. I found taking pepto bismol helps; maybe later on baking soda with water. If you can remember at the time to take bromelain/papain with the food that also helps--plus you can take it later on by itself to help reduce the inflammation. Again marshmallow root helps a lot too to soothe the villi. The bromelain/papain and marshmallow root are good to do in general whether you have ingested gluten or not--just to help heal and strengthen the villi etc.

Good luck--and don't do anything taxing or strenuous the next day or so. I did and ended up getting a nasty bacterial infection due to my system being so out of sorts...

mftnchn Explorer

I have read a number of references to this very thing here on the forum, and my experience seems to be that as well. You might search the forum about it.

spunky Contributor

A person who has been gluten free for over 10 years recently told me that with him, it gradually got to be that accidental glutenings became less and less severe and are now just mild reactions. THat's a hopeful thing.

For me, I've been gluten free for just over two years, and the last time glutened accidentally entered my world I was in really awful shape, worse than I had ever experienced, for 4 weeks. It made me really paranoid to ever eat anywhere again but home! But if the above information is correct, I guess there is some point when things are better and accidents aren't as devastating, yet still, of course, best avoided as much as possible.

cruelshoes Enthusiast

It has been my experience that my reactions to gluten get more severe the longer I am gluten-free. It has also been true for my son as well. He was asymptomatic when he was diagnosed. Now when he gets exposed to gluten, his reaction is swift and terrible.

Kinda seems unfair, doesn't it? The harder we try to be gluten-free, the worse the reaction to gluten gets. It really gives one a powerful incentive to remain totally gluten-free. ;)

Hope you feel better. Getting gluten happens to the best of us sometimes - even if we make superhuman effort to stay away from it.

aikiducky Apprentice

My experience, now 3,5 years gluten free, has been that in the first two years my reactions got worse, but lately they have been milder. So there's hope yet. :)

Of course I'm still just as strict. But accidents happen and I'm happy they don't give me quite as bad symptoms anymore.

Pauliina

YoloGx Rookie
My experience, now 3,5 years gluten free, has been that in the first two years my reactions got worse, but lately they have been milder. So there's hope yet. :)

Of course I'm still just as strict. But accidents happen and I'm happy they don't give me quite as bad symptoms anymore.

Pauliina

This is definitely nice to know! It goes to show just having occult glutenings regularly still messes a person up pretty well. I have avoided gluten for years but did not have the shooting D etc. from CC until I went off everything--i.e., after I learned about all the trace sources -- including hand soap, alcohol based herbal tinctures, lipstick etc. Certainly now I don't have the head, neck, and body aches I used to have plus have gotten rid of anxiety and lack of clarity I had around certain issues--like making order in my car and house!

Bea


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



Celiac.com Sponsor (A8-M):



curlyfries Contributor

I so understand what you mean about "lacking clarity", especially when it comes to order in my house. My heart is willing , but when I start a project [i'm trying to get rid of useless junk] I get to a certain point and my mind and body doesn't know where to go from there. I guess it involves a lot of decission-making, and it is too overwhelming for me. :blink: I end up with a lot of things started, but nothing finished :wacko:

home-based-mom Contributor
I so understand what you mean about "lacking clarity", especially when it comes to order in my house. My heart is willing , but when I start a project [i'm trying to get rid of useless junk] I get to a certain point and my mind and body doesn't know where to go from there. I guess it involves a lot of decission-making, and it is too overwhelming for me. :blink: I end up with a lot of things started, but nothing finished :wacko:

You must be the long-lost twin I never knew I had!!! :lol::lol::lol:

babysteps Contributor

hm, is there a pack-rat symptom too with celiac?!? :o

I am glad to hear after a while reaction may get less - mine is still increasing. But I'm getting better at avoiding cc. And no shooting D for several months now :D

For pack-rats and all of us who love to start projects (but not always finish), I have found Open Original Shared Link helpful. May not work for everyone, but helped me learn how to create some order without it being a huge all-at-once project (my mother was a hoarder, so I never really learned cleaning habits).

Ivanna44 Apprentice
hm, is there a pack-rat symptom too with celiac?!? :o

I am glad to hear after a while reaction may get less - mine is still increasing. But I'm getting better at avoiding cc. And no shooting D for several months now :D

For pack-rats and all of us who love to start projects (but not always finish), I have found Open Original Shared Link helpful. May not work for everyone, but helped me learn how to create some order without it being a huge all-at-once project (my mother was a hoarder, so I never really learned cleaning habits).

thank you all for the replies,

Nice (yeah, I know not good) but still good in a way to hear that reactions do seem to worsen the first few years you are away from the gluten. My stomach is still really sore today. I feel like I have done a thousand situps, really sore muslces in stomach and bloated big time!!! :(

I wonder if they worsen during the first few years as your body is still not all that healed, and you offer it another "blow" so to speak. As I said to a friend today; I don't want to go anywhere near the stuff now. Being sick for 2 days now is crap :unsure: I was still plagued by tiredness and bloating, and 3 rounds of D today. :(

Thank you Yolo for the suggestions on the Pestimol Bisimol, I ended up taking some of that a few minutes ago. I'll try the herbal stuff another time. I used to wander into some herbal stuff, for the odd ailiment. But, with the costs of gluten-free foods , that is taking up most of my spare monies (and not so spare $).

Plus I got a stressful phone message left for me while I was out this afternoon. So being sick and being worried now about this phone call message, has not helped my stomach any. I am hopeful, that the tummy will be better tomorrow.

I think for a while I will go off the coffee too. I'm still a big fan of hot drinks, so i'll do tea for a few days. that helped me when I had a stomach flu; at Christmas time; it lasted 2 weeks that flu, was not right for weeks. But, at that time I was still a full time gluten eater.

I've made an doc. appointment for monday next week for a followup to the "trying" out the gluten-free diet. Will keep you posted.

Thank you babysteps; I've known aobut he flylady and her website for years. I was quite good at it at one time. Basically until my son started school (he attends a specialized on for autism kids >preschool, it is run all year round) So I am up at 5:30am most days, to get him to shuffle off to his preschool. Very busy morning. My son don't sleep till near midnight some days, so I end up getting 3-5 hours sleep, most days just 3, due to last minute running about. So I tend to snooze in the couch after my son has left >gotten on his bus.

FlyLady is good, I still use her approaches even though I'm not a flybabie anymore. I still do some of the daily chores; or Ta Da's. One ta da at a time. And pat yourself on back for doing it. >I love her site. I think of going gluten free as a Ta Da to do daily, one Ta Da at a time. and pat self on back for trying. Going gluten free is hard, and you need babysteps to do it. Its so overwhelming. I believe (own opinion) it can take up to 6 monts to detox your body of all gluten forms, especialy the hidden ones. But I will get there.

hugs.

thanks again

curlyfries Contributor
You must be the long-lost twin I never knew I had!!! :lol::lol::lol:

:P

YoloGx Rookie
:P

You mean its not just me and my crazy celiac ridden family?

Similarly I just joined messy.com.

Bea

babysteps Contributor
one Ta Da at a time. and pat self on back for trying.

exactly. lots of :) stickers for gluten-free achievement, right? and thank goodness there is no 'wagon' to fall off of :D

YoloGx Rookie

Just wanted to add in my (maybe our?) defense--I am much better at figuring out what is essential and what isn't than most. I think it comes from a lifetime of only semi functionality so in order to accomplish anything I needed to ignore the nonessentials to get on with what was really important. Has anyone else here responded like that?

Bea

curlyfries Contributor
Just wanted to add in my (maybe our?) defense--I am much better at figuring out what is essential and what isn't than most. I think it comes from a lifetime of only semi functionality so in order to accomplish anything I needed to ignore the nonessentials to get on with what was really important. Has anyone else here responded like that?

Bea

Exactly! ;) I never thought of describing it that way, but...works for me! I used to feel guilty that I couldn't "do it all" but I have come to realize that I'm taking care of what's most important....my family.

Don't get me wrong . I'm not a packrat and my house isn't a pig sty, but don't come knocking on my door without fair warning :ph34r: Martha Stewart is not welcome at my house! :lol::lol::lol:

kbtoyssni Contributor

It seems like most people on here get worse reaction the longer they're gluten-free. But I'm the opposite. I hardly react at all anymore. Which is some ways is really nice, but it's also hard to know if I'm accidentally glutening myself.

As for the messy question, I'm super neat. I like my spaces to be clean and open, and I'm constantly taking things to Goodwill.

YoloGx Rookie
It seems like most people on here get worse reaction the longer they're gluten-free. But I'm the opposite. I hardly react at all anymore. Which is some ways is really nice, but it's also hard to know if I'm accidentally glutening myself.

As for the messy question, I'm super neat. I like my spaces to be clean and open, and I'm constantly taking things to Goodwill.

Good for you (about Goodwil). I am in the process of cleaning things out but can't claim being super neat. I am the daughter of two inveterate pack rats and I think I acquired the gene. However it has gotten so it bothers even me. I used to laugh it off but can't any longer. The messy.com is helpful as a nice nagging mother I never had.

I am hopeful that some day I will be less reactive. For now its kind of a nightmare but only in the social realm with new people--and for those who care for me its not such a big deal after all... Am reading Jax Lowell's Gluten Free Bible book, and though I doubt I could ever achieve her social aplomb, I may try some of her tactics to not point the problem up in such high relief--except with relatives that is who need to know...

JoeB Apprentice

I've been gluten-free for 3 years and am very careful about what I eat. For the first time in about 1 1/2 years, I got glutened twice in the last 2 weeks and the reaction was horrible. Within about 20 minutes both times, I had uncontrollable "D". I've never had that happen before and I don't want to have it happen again. The last time was yesterday morning and I feel pretty miserable today.

My GI told me to expect bad reactions the longer I am gluten-free.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

    2. - CC90 replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

    3. - Wheatwacked replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

    4. - Wheatwacked commented on Scott Adams's article in Origins of Celiac Disease
      19

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

    5. - trents replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

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

    • Total Members
      134,189
    • Most Online (within 30 mins)
      10,442

    Lori Meier
    Newest Member
    Lori Meier
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
    • trents
      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
    • cristiana
      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
×
×
  • Create New...