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Do Reactions To Gluten Get Worse The Longer Diagnosed?


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16 replies to this topic

#1 mommyof4

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Posted 24 August 2012 - 07:23 AM

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!
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#2 kittty

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Posted 24 August 2012 - 08:13 AM

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.
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#3 mopsiecat

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Posted 26 August 2012 - 03:19 PM

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.
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Diagnosed with celiac disease July 2004


“Socialism is a philosophy of failure, the creed of ignorance, and the gospel of envy, its inherent virtue is the equal sharing of misery.” — Winston Churchill

#4 Persei V.

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Posted 26 August 2012 - 03:50 PM

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:
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Lactose free: 8/6/2006
Gluten and dairy free: 5/2/2012
Grain free: 11/12/2012

I am able to eat somre processed foods again (chocolate, lollipops, soysauce).

#5 Raining Skittles

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Posted 28 August 2012 - 08:59 AM

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.
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Two abdominal surgeries in '74 removing 2/3 of small intestine.
IBS diagnosis in '93.
RA (mis)diagnosis in '97.
Pescetarian 2000-2009.
Gluten issue suspicion in Sep '11.
Dairy and gluten-free as of Aug '12.
Trying dairy again Nov '12.... we'll see....

#6 Kiwiwio

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Posted 29 August 2012 - 05:26 AM

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.
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#7 Kiwiwio

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Posted 29 August 2012 - 05:28 AM

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?
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#8 AmandaC

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Posted 19 November 2012 - 07:35 AM

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, 20 November 2012 - 03:36 PM.

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#9 luvs2eat

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Posted 19 November 2012 - 07:47 AM

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.
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Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!

#10 DavinaRN

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Posted 19 November 2012 - 07:49 PM

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?
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Gluten Free since October 2012
Negative blood work, positive dietary response
Endocrinologist offered referral to GI if I needed formal diagnosis to follow the diet, otherwise just pass on wheat, barley & rye
and save my money

#11 Em314

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Posted 08 December 2012 - 07:33 PM

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.)
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Diagnosed celiac December 2012 (bloodwork + endoscopy). Gluten-free since.

#12 Hala

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Posted 09 December 2012 - 04:50 AM

Maybe the more your intestines heal the more intestine there is to damage when you get glutened?
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Diagnosed with Coeliac Disease after positive blood test and endoscopy (total villous atrophy and inflammation)

Gluten-free since 13th November 2012

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#13 dilettantesteph

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Posted 09 December 2012 - 06:42 AM

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.
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#14 julissa

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Posted 09 December 2012 - 07:21 AM

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.
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#15 Em314

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Posted 09 December 2012 - 05:12 PM

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
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Diagnosed celiac December 2012 (bloodwork + endoscopy). Gluten-free since.


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