Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Do Reactions To Gluten Get Worse The Longer Diagnosed?
0

19 posts in this topic

I was diagnosed with Celiac Disease last Fall...been gluten free since then. It seems like if I do get glutened, my reactions are getting worse. Is this typical...have I gotten even more sensitive? Any one else experience this?

Also, would any of you share what your body experiences when you get glutened? I am so strict with my diet that I can not even pinpoint where I would be getting gluten from, but I have had a couple really rough nights....severe stomach pain(more like intestinal pain because it's right in my middle section), then the diahrea hits, then the next day I have a "hung over" feeling with brain fog.

I don't know when what I experience is related to Celiac disease or something else not even related.

Thanks!

0

Share this post


Link to post
Share on other sites


Ads by Google:

I've only been gluten-free for four months, and got glutened for the first time a few weeks ago. The symptoms definitely felt worse than I had previously felt on gluten, but it could just be that I used to feel ill every day so it was normal, and my new normal is so much healthier in comparison.

The first symptom was a migraine headache, followed by two days of feeling flu-like (sluggish, achy, low-grade fever) and this is also when the diarrhea started. The flu-like stuff went away, and was replaced by extreme anxiety. The anxiety and diarrhea stuck around for about two more weeks.

0

Share this post


Link to post
Share on other sites

I was diagnosed with Celiac Disease last Fall...been gluten free since then. It seems like if I do get glutened, my reactions are getting worse. Is this typical...have I gotten even more sensitive? Any one else experience this?

Also, would any of you share what your body experiences when you get glutened? I am so strict with my diet that I can not even pinpoint where I would be getting gluten from, but I have had a couple really rough nights....severe stomach pain(more like intestinal pain because it's right in my middle section), then the diahrea hits, then the next day I have a "hung over" feeling with brain fog.

I don't know when what I experience is related to Celiac disease or something else not even related.

Thanks!

I've become much more sensitive as the years go by. Right now I'm dealing with a lot of pain and I don't know for sure where I got the gluten from. I have two siblings with celiac disease and they are no where near as sensitive as I am. I guess some of us are just super sensitive.

0

Share this post


Link to post
Share on other sites

I'm not sure if mine got a bit worst, or I got used to feel well and not bloated so when it happens again, it feels worst because it isn't familiar to me anymore... :huh:

0

Share this post


Link to post
Share on other sites

mommyof4,

I've only been gluten-free for a couple weeks, but got glutened twice already (big learning curve here). My symptoms were definitely worse than when I was eating it on a regular basis.

0

Share this post


Link to post
Share on other sites




I definitely have more severe symptoms or perhaps similar to my worst attacks prior to diagnosis. The other day, I was in so much abdominal pain, I seriously considered going to the hospital for a morphine drip. The last time i even had soy sauce, I was sick for 2 weeks, vomiting, diarrhea, joint pain, foggy head, hung over feeling. It does for sure get worse but i also wonder if it feels more severe because the constant, intense, debilitating pain that I had (particularly in the year before I was diagnosed) isn't present. I think when yu feel that bad every day and it finally stops, maybe your pain threshold decreases.

0

Share this post


Link to post
Share on other sites

That is so interesting! I used to get panic attacks and since I have been gluten-free, it has largely subsided. I do get anxious when I accidentally eat gluten. I thought it was from the fear of the pain I would or was feeling. Is this a physical reaction caused by celiac?

0

Share this post


Link to post
Share on other sites

Hi Mommyof4,

I have been gluten-free for four years and diagnosed by biopsy. I am very strict with my gluten-free diet, but will sometimes take the chance of eating out. I always reiterate the gluten-free thing and try to make sure they know the importance of it. (my 12 year old sone also has Celiac). Last Sat. evening, we ate chinese, which is usually ok and got glutenated. My reaction seems to get worse every time. It takes about 2-3 hours and I start to feel nausous and then the vomitting begins. I vomit until my stomach seems to be empty, while suffering from hot and cold sweats. Then the severe cramping sets in and then the diarrhea begins. It is so aweful! The entire next day, I experienced a sour stomach and weakness. It just sucks the life out of us. My son was in the bathroom with me at the same time experiencing the same thing. Poor kid. I think I may just have to sadly stop eating out!

Edited by AmandaC
0

Share this post


Link to post
Share on other sites

I've been gluten-free for 10 years. About a year in, I chowed down on a big hunk of crusty bread slathered w/ butter and NOTHING happened. I actually had thought of a "monthly cheat," but never did it. About 4 years in, I was glutened accidentally and just made it to the bathroom when the diarrhea hit about 4 hours later. Just a few months ago, I ate an entire gluten-filled hot dog bun cause I didn't read the stupid bag and assumed Rudi's was all gluten-free. The bag was full-on wheat buns and I completely missed it. About 2 hours later, I spent the worst 3 hours of my life... both ends erupting like a volcano... until I was emptier than empty. I spent the next day on the couch. So, my answser is YES... you absolutely do become more sensitive the longer you're gluten-free.

0

Share this post


Link to post
Share on other sites

You mean all Rudi's are not gluten free?

Does how much you get affect how bad symptoms are, such as CC symptoms less than eating slice of bread?

0

Share this post


Link to post
Share on other sites

This is something I've been wondering as well. Seems like a double-edged sword- you become more vulnerable, but at least you know for sure when you've done something wrong. I'm pretty sure right now (just starting out) I still wouldn't know. (For one thing, even when my diet was full of gluten, I'd feel OK sometimes and other times I'd have pretty bad symptoms, so I'm used to feeling OK sometimes and awful others.)

0

Share this post


Link to post
Share on other sites

Maybe the more your intestines heal the more intestine there is to damage when you get glutened?

0

Share this post


Link to post
Share on other sites

I'm on my 6th year now. At first I felt wonderful just eliminating bread and cereal. Then I had to learn a lot more about sources of gluten as I became sensitive to far lower levels of gluten. I am very careful about my diet and now my reactions are much less severe. If I try anything new, I only try a little bit at first. That way, if I do react to it, I can hopefully limit the reaction to a minor one. Reactions from smaller amounts of gluten are definitely less than reactions from larger amounts of gluten in my case. I try to only add one new thing per week to make it easy to figure out what it is. If I don't know what it is, then I begin a big series of elimination/challenge diets with everything in my diet, one thing per week until I track it down. That isn't a nice process because until I figure it out, I get worse and worse. While I'm doing that I do as much research as I can about the things in my diet to try to make good guesses about what might be getting me.

My worse reactions include vomiting, uncontrollable diarrhea, depression, irritability, joint pain, fatigue, reflux, brain fog, blurred vision, stomach pain, muscle aches, and probably some things I have forgotten to list. A more minor reaction usually includes all those things to a lesser extent except for the vomiting. I don't get the vomiting unless I have gotten a big gluten dose.

0

Share this post


Link to post
Share on other sites

the symptoms I got were nausea and dizziness mostly, and an overall sick feeling in my gut. I glutened myself last week by baking with my granddaughter, I was elbow deep in flour. (I am new to this and didn't realize that this would be bad, I had assumed not eating the cookies would be a given and I should be safe, but working with the flour was a huge mistake). the dizziness and nausea returned for a day.

0

Share this post


Link to post
Share on other sites

Maybe the more your intestines heal the more intestine there is to damage when you get glutened?

Thinking about it, I was wondering something along the same lines- perhaps there is a more severe reaction when your digestive system has healed and is better able to absorb everything- including gluten.

It is also possible that there's a sample bias on here with at least one of the following factors:

-the people who post are the people who react most severely

-the reactions that are deemed to be "worth talking about" are the most severe reactions

-people who have been diagnosed for a long time are more in tune with/better able to recognize symptoms of "glutening"

-some of the posters who talk about "glutenings" are actually talking about food poisoning or other non-celiac-related digestive issues (which most people get from time to time) but have become accustomed to blaming all GI upset on gluten

0

Share this post


Link to post
Share on other sites

Been gluten free 7-8 wks, got gluten first day (thursday) of mini vacation. Stopped by mom & pop place that hand patties there burgers, have had there hamburger steak before but really was craving a burger so ordered it without the bun with only cheese, ketsup and mustard. Mistake, came to find out the stretch their burger meat with crackers and milk :(. I was Soooo sick within an hour DH had to pull over for me to dig out neausa meds, pain meds and decongestant, now I still have base line neausa, mild aches and pains, headache and constipation. The only saving grace I have is no diahhrea.

0

Share this post


Link to post
Share on other sites

Thinking about it, I was wondering something along the same lines- perhaps there is a more severe reaction when your digestive system has healed and is better able to absorb everything- including gluten.

It is also possible that there's a sample bias on here with at least one of the following factors:

-the people who post are the people who react most severely

-the reactions that are deemed to be "worth talking about" are the most severe reactions

-people who have been diagnosed for a long time are more in tune with/better able to recognize symptoms of "glutening"

-some of the posters who talk about "glutenings" are actually talking about food poisoning or other non-celiac-related digestive issues (which most people get from time to time) but have become accustomed to blaming all GI upset on gluten

Yes, this is very true. I had also thought about the increased ability of recognising glutening. Also, before you go gluten-free, you are constantly being glutened so the symptoms are more constant/gradual, whereas after going gluten-free, once you get glutened there will be much more of an observable difference from your non-glutened self!

0

Share this post


Link to post
Share on other sites
On 3/26/2016 at 9:37 PM, kam00096 said:

Hi. I've posted before about this but I keep getting worse and more stressed. I'm so confused and don't know what to do next. I've had two blood tests come back positive for celiac but will have an 18 week wait for an appointment with a gastroenterologist and another wait after that for an endoscopy. I had decided not to give up gluten until after that because I'm phobic about vomiting and everyone's telling me I'll be so much more ill if I cut it out just now then have to do a gluten challenge. 

Trouble is I'm really ill at the moment and I'm not sure how much longer I can cope with it. I'm also not convinced that celiac can be the cause of all of my neurological symptoms and am still pretty terrified that I have ms or some other illness. I've seen a neurologist and ENT in the past but they just dismissed me and I can't get tested for anything else because the doctor thinks it's all in my head, so no mri. 

My symptoms are... nausea and problems with swallowing plus severe IBS  (for over 10 years), bloating etc, reflux, dizziness/ boatiness (for last 3 years), fatigue, weakness, legs feel like jelly, off balance, muscle pain and twitches, pins and needles, night sweats, night terrors, waking up with full body tremors, blurred vision, extremely poor night vision, essential tremor, hair loss... 

My B12, ferritin, blood sugar and thyroid tests all came back fine. The docs have just run a micronutrient panel but are saying it will take weeks or months for the results to come back and they don't expect anything to be wrong with them anyways. 

I don't know what to do but I've wasted the last 13 years of my life being ill and I'm at the end of my tether. 

 

0

Share this post


Link to post
Share on other sites

i am feeling the same been glutin free for about 7 yrs  at the moment i am feeling ill ate some small easter egg that was glutin free and my back was killing me and my anxciety is bad  x cant think what to do didnt think the gluten would effect my back now wondering if i am intolerent to dairy so frightened to drik coffee till i can get special milk 

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,640
    • Total Posts
      921,549
  • Topics

  • Posts

    • That's great to hear you are feeling better Nightsky.  I really think when our GI systems are in distress already that it doesn't take much to set off symptoms.  Once I eliminated the other foods that cause me symptoms that helped a lot too.  And added some extra vitamin D to my diet and selenium. Many of us have developed reactions to other foods besides gluten and need to avoid them to keep symptoms at bay.  For me nightshades, carrots, soy, dairy, and celery all cause symptoms.  It took me awhile to figure out all those food culprits, but it made a big difference getting them out of my diet. But we are all individuals, and our bodies react individually.  So you may or may not have additional food intolerances develop. Celiac is one of those life journey things and we learn as we go.  Just keep the bottle of aspirin handy!
    • I know that Lea & Perrins Worcestershire Sauce  in the US is gluten free, I also know that in Canada it is NOT. This is a very reliable site: http://www.glutenfreedietitian.com/vinegar/ But it is in the US. I'm agast that the Irish Celiac Society says malt vinegar is gluten free.  I wouldn't use it. No sense taking any chance at all.
    • You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse.  Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 
    • Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
    • Hi All, I'm new to this and very confused! I have Lea & Perrins WC sauce, it lists it's first ingredient as Malt Vinegar.  I have the Coeliac Society of Ireland Food List 2015 here, and it says "All Vinegars are Gluten Free including Malt Vinegar." Doesn't that mean that L&P Worcestershire sauce is safe?   Their website states " Lea & Perrins® Worcestershire Sauce is cholesterol free, fat free, preservative free, gluten free and has 80% less sodium than soy sauce. " I'm cooking for my coeliac niece, can't afford to make a mistake!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,643
    • Most Online
      3,093

    Newest Member
    moojoo
    Joined