Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

Glutened?


  • Please log in to reply

11 replies to this topic

#1 SpiralArrow

 
SpiralArrow

    New Community Member

  • Advanced Members
  • Pip
  • 17 posts
 

Posted 07 August 2011 - 11:57 PM

Hello everyone. Long story short, I have to wait until september to see a GI and in the meantime I have been unsure about whether to keep eating gluten for further testing, or to start gluten free immedietly. I know I've risked ruining my testing by doing this, but I've been trying gluten free for about 3-4 weeks, though I would call it "gluten-light" because I've been making a few little mistakes here and there. But for the most part I was beginning to feel much better. I was sleeping better, my skin cleared up, I was gaining back some muscle and put on a little healthy weight, my BMs were beginning to look more normal, etc. If I did become accidentally glutened, the worst I would experience would be bloating, ratty mood swings and constipation that would last a few days.

Two days ago I began to worry about what would happen if I couldn't get a proper diagnosis, (I already had a blood test that came back negative) so I thought "maybe I'll just eat one item of gluteny food every couple of days now until September." So I decided to have a little chocolate chip muffin.

STUPID IDEA.

My stomach did what I expected, bloated up, and after a while my head began to feel foggy. All familiar sensations so I thought I could handle it. But as the day went on the brain fog became progressively worse and I started to develop strange pains in my abdomen, which was accompanied by nausea. These became so intense that pain relief didn't seem to aleviate any of the discomfort at all, and by the evening even water seemed to be making things worse.

Luckily I was able to sleep through the first night, and I woke up feeling a bit better. The nausea was gone, the only problem I has was my stomach felt as if I had done 1000 situps. But still, I got up and tried to get on with my day, and had a light gluten-free breakfast. But this seemed to trigger off the nausea and the pain again, only this time it was unbearably painful. I spent most of the day doubled over or curled up crying on my bed. There was no position I could get into that helped. And I couldn't stomach water at all.

I got no sleep whatsoever, and now I'm awake on the third day feeling terrible. The only good thing that happened is I've been able to pass some BMs this morning and (sorry if tmi!) apart from them looking the way they usually do when I eat gluten, there is no blood or anything like that. Some of the pain has lessened and I feel slightly more mobile, but I still feel nauseus and am still experiencing pain beneath my belly button. I'm too worried to try and eat or drink anything.

The pain has been so intense I really am scared, I've never had a reaction this bad before. Does this sound like the typical scenario where if someone avoids gluten for a period of time, reactions to gluten will be a lot more severe? Or does it sound like anything else is going on? I'm considering visiting a hospital if I don't feel much better today, I can't handle the pain.

If this is a gluten reaction then I'm definitely NEVER eating gluten ever again and there is no way I'm ever going to do a gluten challenge.
If anyone could offer some advice on how to ease the pain, or just some friendly words I'd appreciate it. :(
  • 0

Celiac.com Sponsor:

#2 kellynolan82

 
kellynolan82

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 169 posts
 

Posted 08 August 2011 - 03:06 AM

I feel your pain. :(

You're certainly not alone. I would say that the best thing to do now is remain gluten free. The biopsy/endoscopy/colonoscopy really isn't necessary, in my own opinion (as long as you're prepared to adopt a 100% gluten free lifestyle from this day forward).

If you do wish to go ahead, however, you will most likely need to remain on a gluten-containing diet and partake in the gluten challenge to gain accurate results.

Many individuals react to gluten far worse once on the gluten free diet. I know I myself do as well.

I wish you well. :)
  • 1

#3 zus888

 
zus888

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 216 posts
 

Posted 08 August 2011 - 04:23 AM

If it's any consolation, you might be nearing the end of your episode. From what I've read on here, most people's reactions last 4-5 days, though some are shorter and some can be a lot longer. Also, what you describe is similar to what I have read here from others. I don't get digestive responses, so I can't relate from experience, but I do know that your experience sounds very much like many others on this board who have been accidentally glutened.

Hope you start feeling better soon!!
  • 1
Suzanna

#4 ainembol

 
ainembol

    New Community Member

  • Members
  • Pip
  • 2 posts
 

Posted 08 August 2011 - 04:32 AM

I don't know why but fish oil helps me feel better when I accidentally contaminate myself.






Hello everyone. Long story short, I have to wait until september to see a GI and in the meantime I have been unsure about whether to keep eating gluten for further testing, or to start gluten free immedietly. I know I've risked ruining my testing by doing this, but I've been trying gluten free for about 3-4 weeks, though I would call it "gluten-light" because I've been making a few little mistakes here and there. But for the most part I was beginning to feel much better. I was sleeping better, my skin cleared up, I was gaining back some muscle and put on a little healthy weight, my BMs were beginning to look more normal, etc. If I did become accidentally glutened, the worst I would experience would be bloating, ratty mood swings and constipation that would last a few days.

Two days ago I began to worry about what would happen if I couldn't get a proper diagnosis, (I already had a blood test that came back negative) so I thought "maybe I'll just eat one item of gluteny food every couple of days now until September." So I decided to have a little chocolate chip muffin.

STUPID IDEA.

My stomach did what I expected, bloated up, and after a while my head began to feel foggy. All familiar sensations so I thought I could handle it. But as the day went on the brain fog became progressively worse and I started to develop strange pains in my abdomen, which was accompanied by nausea. These became so intense that pain relief didn't seem to aleviate any of the discomfort at all, and by the evening even water seemed to be making things worse.

Luckily I was able to sleep through the first night, and I woke up feeling a bit better. The nausea was gone, the only problem I has was my stomach felt as if I had done 1000 situps. But still, I got up and tried to get on with my day, and had a light gluten-free breakfast. But this seemed to trigger off the nausea and the pain again, only this time it was unbearably painful. I spent most of the day doubled over or curled up crying on my bed. There was no position I could get into that helped. And I couldn't stomach water at all.

I got no sleep whatsoever, and now I'm awake on the third day feeling terrible. The only good thing that happened is I've been able to pass some BMs this morning and (sorry if tmi!) apart from them looking the way they usually do when I eat gluten, there is no blood or anything like that. Some of the pain has lessened and I feel slightly more mobile, but I still feel nauseus and am still experiencing pain beneath my belly button. I'm too worried to try and eat or drink anything.

The pain has been so intense I really am scared, I've never had a reaction this bad before. Does this sound like the typical scenario where if someone avoids gluten for a period of time, reactions to gluten will be a lot more severe? Or does it sound like anything else is going on? I'm considering visiting a hospital if I don't feel much better today, I can't handle the pain.

If this is a gluten reaction then I'm definitely NEVER eating gluten ever again and there is no way I'm ever going to do a gluten challenge.
If anyone could offer some advice on how to ease the pain, or just some friendly words I'd appreciate it. :(


  • 1

#5 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,793 posts
 

Posted 08 August 2011 - 06:01 AM

The good news is you are likely on the downside of your reaction and should be feeling better soon. The bad news is that to get any testing done eating one gluten item every two or three days isn't going to do it. You need to eat the equivalent of 3 to 4 slices of bread a day for up to 3 months if you have had time gluten free or gluten light. That said having symptoms clear on the diet and return with a challenge is pretty diagnostic in itself.
  • 1
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#6 Skylark

 
Skylark

    Glutenologist

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,490 posts
 

Posted 08 August 2011 - 08:43 AM

I think you should call your doctor. Pain that bad might be gluten but I'd want to be sure.
  • 2

#7 SpiralArrow

 
SpiralArrow

    New Community Member

  • Advanced Members
  • Pip
  • 17 posts
 

Posted 10 August 2011 - 01:03 AM

Thanks for the replies everyone. :) I'm a bit of a hypochondriac and having other's input tends to stop me from fearing the worst.

The pain hasn't subsided, but I did get my appetite back yesterday and I stopped feeling sick. Problem is even the gluten-free food is now causing the pain to intensify. I just came back from my doctor who checked my stomach, and she has just given me pain killers and is going to get me a dietitian while I wait for my GI in September. She's advised me to forget worrying about testing and to just stick to foods that I know don't upset me. I was also told that the specialist I've been booked to see is one of the best in our area.

That's great, but I still can't eat anything and I'm still worried. I've spent most of the last few days curled up in bed and it's painful to walk around. Is this really how bad gluten can be? I asked several times could it be anything that requires immediate attention and she said no. I wish I could fully believe her. I don't really know where to go from here now.
  • 0

#8 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,793 posts
 

Posted 10 August 2011 - 03:08 AM

Thanks for the replies everyone. :) I'm a bit of a hypochondriac and having other's input tends to stop me from fearing the worst.

The pain hasn't subsided, but I did get my appetite back yesterday and I stopped feeling sick. Problem is even the gluten-free food is now causing the pain to intensify. I just came back from my doctor who checked my stomach, and she has just given me pain killers and is going to get me a dietitian while I wait for my GI in September. She's advised me to forget worrying about testing and to just stick to foods that I know don't upset me. I was also told that the specialist I've been booked to see is one of the best in our area.

That's great, but I still can't eat anything and I'm still worried. I've spent most of the last few days curled up in bed and it's painful to walk around. Is this really how bad gluten can be? I asked several times could it be anything that requires immediate attention and she said no. I wish I could fully believe her. I don't really know where to go from here now.


If you are still in that much pain after this amount of time and you feel your doctor is not addressing it perhaps a second opinion is in order. While doctors can be slow to recognize celiac they can also have a tendency to attribute everything that comes along after as being celiac related. If you don't trust this doctor it may be time to find another one.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#9 SpiralArrow

 
SpiralArrow

    New Community Member

  • Advanced Members
  • Pip
  • 17 posts
 

Posted 10 August 2011 - 07:40 AM

If you are still in that much pain after this amount of time and you feel your doctor is not addressing it perhaps a second opinion is in order. While doctors can be slow to recognize celiac they can also have a tendency to attribute everything that comes along after as being celiac related. If you don't trust this doctor it may be time to find another one.



That's the thing, my doctor still refuses to say the words "it does sound like gluten", even though I have given her a lot of evidence now that says otherwise. She definitely thinks my problems are caused by something in my diet, but seemed keen to blame eggs. :blink: Even though I know (at least for now) that eggs don't cause me any problems.

You're all so kind, I don't mean to keep coming back to complain but now I am dealing with a seperate problem. I took two Zapain tablets that I was prescribed this morning and within minutes I was having terrible vertigo, nausea, numbness and I've been even more of a wreck today than I was without the pain relief! Turns out I might have an issue with Codeine. At least I could attempt to eat food yesterday, this really isn't my week. I'm probably going to have to get a second opinion before the week is out, thanks again for responding.
  • 0

#10 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,793 posts
 

Posted 10 August 2011 - 09:59 AM

That's the thing, my doctor still refuses to say the words "it does sound like gluten", even though I have given her a lot of evidence now that says otherwise. She definitely thinks my problems are caused by something in my diet, but seemed keen to blame eggs. :blink: Even though I know (at least for now) that eggs don't cause me any problems.

You're all so kind, I don't mean to keep coming back to complain but now I am dealing with a seperate problem. I took two Zapain tablets that I was prescribed this morning and within minutes I was having terrible vertigo, nausea, numbness and I've been even more of a wreck today than I was without the pain relief! Turns out I might have an issue with Codeine. At least I could attempt to eat food yesterday, this really isn't my week. I'm probably going to have to get a second opinion before the week is out, thanks again for responding.


Did you make sure the med is gluten free? Some pharmaceys will check for you but some of us go right to the maker. If you have the bottle somewhere, likely in real tiny letters is the name of the company that makes it. If you enter their name and the words contact information in a search engine you should be able to find a link that will tell you how to call them. I usually call by phone rather than email as it seems to get a quicker answer.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#11 SpiralArrow

 
SpiralArrow

    New Community Member

  • Advanced Members
  • Pip
  • 17 posts
 

Posted 12 August 2011 - 11:41 PM

Don't worry, I did indeed check beforehand. It's been a few days now and the pain has eased off a lot and I can eat food again. I'm just dealing with feeling a bit weak and fragile. Unless my specialist finds anything else in the future, I'm going to assume that this was an example of one of my "bad" reactions to gluten! At least I learnt my lesson, now I have to reverse the damage and somehow gain the 5 pounds back that I lost.
  • 0

#12 T.H.

 
T.H.

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,816 posts
 

Posted 12 August 2011 - 11:56 PM

It's been a few days now and the pain has eased off a lot and I can eat food again.



Oh, very glad to know you are improving! My daughter's reaction to gluten does not seem as intense, pain-wise. However, when she's been glutened, everything that goes in her stomach for the next few days will set off the pain, almost exactly like you mentioned. She hates to eat or drink for days afterward, because she knows it's going to hurt. :-(

So sorry you had to go through that! And also...if the pain is really, really bad, you might want to consider a doctor again, even if it was gluten. I know and have heard of a few people whose reaction to gluten is so bad that they need hospitalization. Most doctors don't have a clue that's even a possibility, so even if they are giving you the brush off, I'd say listen to yourself and tell them to shove it and check you anyway, if you are in immense pain.



God....I am just waiting for the miraculous day virtual reality exists and we can let these folks feel what it's actually like for us. Somehow, I bet they won't be as dismissive after that!
  • 0

T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: