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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Do Reactions To Gluten Get Worse The Longer Diagnosed?
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31 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!

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

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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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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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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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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.

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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!

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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. 

 

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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 

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I was diagnosed with Celiac's Disease when I was just 2 years old and have been on a strict gluten-free diet for 16 years. I am 18 years old. I have problems with my health, and they never seem to really go away. As of late, my health has taken a turn down a steep slope. What was believed to be an ulcer has turned out not to be and now my family is concerned that it is something that is going on with my Celiac's. I feel sick all the time. I'm always cold. I have no energy, and I can't keep weight on.

Edited by AshMarBorr
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6 hours ago, AshMarBorr said:

I was diagnosed with Celiac's Disease when I was just 2 years old and have been on a strict gluten-free diet for 16 years. I am 18 years old. I have problems with my health, and they never seem to really go away. As of late, my health has taken a turn down a steep slope. What was believed to be an ulcer has turned out not to be and now my family is concerned that it is something that is going on with my Celiac's. I feel sick all the time. I'm always cold. I have no energy, and I can't keep weight on.

Hi AshMarBorr,

It's a good idea to review everything you are eating to see if any gluten could be slipping into your diet.  The first thing though would be a new blood antibodies test to verify if your gliaden antibodies are raised.  Being cold could be a symptom of low thyroid hormone.

Welcome to the forum! :)

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Good question. I was just recently diagnosed Celiac but have been off gluten now for about 3+months now and have learned a few things about my own personal reactions. I'm not sure if the reactions get worse so much as I think I am just more aware to how my body reacts to the gluten. When I was still consuming gluten, my whole body was in a constant state of inflammation and reactivity. Sort of like a constant allergy reaction as it were. Well now that my body has started getting used to being pain free (as I was also diagnosed with severe fibromyalgia and osteoarthritis many years ago), I've noticed that whenever I get into the "briar patch" (what I have dubbed a gluten event) then my body instantly reacts and I know within minutes that I have come into contact or eaten some form of gluten.

ie: this morning I woke up with a prickly rash all over my body with swelling and very painful joints. I know I have not been out to eat and I know I didn't eat gluten yesterday... so what could it have been?

Well, I had used some Jergens Vitamin E lotion just before bed last night. After some research on the ingredients in the product, I discovered the lotion has indeed got a form of gluten in it called Tocopheryl. I also discovered that my favorite winter lip balm (Chapstick) also contains gluten. Of course, I've been dealing with a double whammy today but I have learned my lesson. :wacko:

I also remember that I've always broken out in a rash whenever using lotions etc but never put the two together that it may have very well been a reaction to the gluten all these years. I am just now more aware of how I react to the products containing gluten.

There is life after Celiac and I'm learning how to live again. ;)

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29 minutes ago, Worsum said:

Good question. I was just recently diagnosed Celiac but have been off gluten now for about 3+months now and have learned a few things about my own personal reactions. I'm not sure if the reactions get worse so much as I think I am just more aware to how my body reacts to the gluten. When I was still consuming gluten, my whole body was in a constant state of inflammation and reactivity. Sort of like a constant allergy reaction as it were. Well now that my body has started getting used to being pain free (as I was also diagnosed with severe fibromyalgia and osteoarthritis many years ago), I've noticed that whenever I get into the "briar patch" (what I have dubbed a gluten event) then my body instantly reacts and I know within minutes that I have come into contact or eaten some form of gluten.

ie: this morning I woke up with a prickly rash all over my body with swelling and very painful joints. I know I have not been out to eat and I know I didn't eat gluten yesterday... so what could it have been?

Well, I had used some Jergens Vitamin E lotion just before bed last night. After some research on the ingredients in the product, I discovered the lotion has indeed got a form of gluten in it called Tocopheryl. I also discovered that my favorite winter lip balm (Chapstick) also contains gluten. Of course, I've been dealing with a double whammy today but I have learned my lesson. :wacko:

I also remember that I've always broken out in a rash whenever using lotions etc but never put the two together that it may have very well been a reaction to the gluten all these years. I am just now more aware of how I react to the products containing gluten.

There is life after Celiac and I'm learning how to live again. ;)

Tocopheryl is rarely made from wheat.  Even if it is, it's highly refined and I see not considered a gluten problem. I have had no problems with chopstick.

Also, gluten on the skin should not give a Celiac reactions.  gluten must be consumed .  It is possible to have an allergic reaction to an ingredient in lotion.

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So then there is an allergy going on with something in the lotions outside of the gluten? That would make sense as well. I was told by my doctor that gluten can be absorbed through the skin and cause reactions as well. This is why I thought the lotion was the issue. And since I am so very reactive to absolutely everything right now sometimes it's hard to tell the difference between an allergic reaction and the celiac response. This is all still very new to me.

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3 hours ago, Worsum said:

So then there is an allergy going on with something in the lotions outside of the gluten? That would make sense as well. I was told by my doctor that gluten can be absorbed through the skin and cause reactions as well. This is why I thought the lotion was the issue. And since I am so very reactive to absolutely everything right now sometimes it's hard to tell the difference between an allergic reaction and the celiac response. This is all still very new to me.

Very few naturally occuring things can actually be absorbed thru the skin.  Gluten cannot be absorbed thru the skin.  Lotion seems like it gets absorbed, but it is really just evaporating and going into the dead skin layers.   

 
"Gluten must be ingested to be cause for concern for someone with celiac disease."
 

 

 

 

 

 

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