Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Just Glutened Myself Alot On Purspose To Identify Reactions


  • Please log in to reply

35 replies to this topic

#1 shayre

 
shayre

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 188 posts
 

Posted 11 August 2011 - 03:21 PM

Hi there. Okay, I know that this seems like a completely crazy thing to do. I have been wondering about different vague symptoms that I have, so I thought that one day I'd just gluten myself to see what exactly my symptoms are to only gluten. Now all of these past couple of years I have been having getting better on a gluten-free diet. I would read advice given on this site, and when I decided to take the advice...I would notice improvements each and every time. Even taking extreme caution like the super-sensitives, I found that I would be better. My symtoms were muscle and joint ache and stiffness, extreme fatigue, nerve problems like periph. nueropathy and restless leg syndrome, digestive issues being bloated and extreme constipation since I was a kid, brain fog and headaches, etc. All of these things improved on a gluten-free diet...also free of dairy, corn, soy, high or med fructose fruits, anything fermented, nightshades, tree nuts...and so on. It seemed that I could figure out minute amounts of cross-contamination, and when eliminated...better again. When our whole house went gluten-free...better again. I felt days here and there of being almost normal. Lately, I've been feeling like my gut is just all screwed up again. I was thinking that it was because of weeks of cross-contamination and some social events....and it still may very well be "off" because of that. I feel like I'm just not digesting anything, and I'm back to square one...being compacted and bloated. I look 7 months pregnant right now. I kept a food diary again, and I'm getting no where with it.

So here it is...today I decided that I am going to gluten myself to the max to see what reaction I get. My family and I went to the state fair today. I was petrified to go, thinking that I would get glutened at every turn, especially with my hubby and kids eating fair food. I packed myself a couple of safe snacks and ate before I came...turkey, green beans and strawberries. I was ready to try my best to stay healthy. Then while we were there and my family was gorging on food...I thought...well why not let the gluten day be now. What better place to indulge myself in gluten...THE FAIR. So I talked with my husband and we came to a decision that doing it now would be as good of time as any...he's on vacation. Although NO time is ever a good time. We decided that ruining the stay-cation would be better than attempting it later when all was busy. He was holding a yummy elephant ear up to me saying ..."Do it! Just do it!". I started to, then I couldn't. Then I started to again, then I couldn't do it. I was so fearful! I went back and forth a few times...and finally did it. Whew...boy did I feel weird...and so guilty! So, knowing damage done...I finished it off with my kids. Then I said that if I'm going to gluten myself, then I'm going to do it well! I then ate a giant tenderloin sandwich. A couple of hours went by...and nothing. We came home, and I had to more small candy bars with cookie centers. I was surprised that they weren't actually very tasty to me. I am waiting until I'm hungry and I plan on having a bowl of raisin bran and kashi cereal for dinner. I made sure not to have dairy, corn or hopefully soy...soy that I could tell that my reactions were strictly gluten.

Okay, so it has been about 5 hours, and nothing still. I am definitely more bloated, but I was bloated to start with before all of that. I usually do get more bloated as the day goes on. Now I was "unofficially diagnosed" with celiac disease by my GI doc. I was already gluten free before my testing. My genetics came back with DQ2 and DQ8 with the risk "very high", plus I had all of the symptoms. I also have Hashimoto's thyroid disease, fertility problems PCOS, neuro problems that all came back negative with testing, borderline Lupus and RA. I have a rash that fits DH, but never had biopsy. Again, I continued to get better on gluten-free diet...whereas I was feeling on my deathbed before I went gluten-free. Doesn't that sound like celiac disease to you? Or at the very least gluten sensitivity? Why haven't I reacted? Can anyone explain? Could this whole thing be a big mistake, and how could I misread what seemed completely obvious? Or am I still waiting for the storm to come? I would think that I would react by now with as much gluten as I ate, and how seemingly sensitive I've been? I am so confused and perplexed!!!!!!!
  • 0

Celiac.com Sponsor:

#2 GlutenFreeManna

 
GlutenFreeManna

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,887 posts
 

Posted 11 August 2011 - 03:46 PM

My major reactions (joint pain, fatigue, and other neuro symptoms mostly) can take up to two days to show up. You very well could have something else going on besides gluten intolerance, but I don't know what that could be since you said most of your symptoms resolved or got better gluten-free. Sorry you're having such a hard time deciding what to do!
  • 1
A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#3 T.H.

 
T.H.

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,816 posts
 

Posted 11 August 2011 - 04:14 PM

Oh, that's a hard one! Wish I had the answer! I think it's kind of a 'yes' to all questions. It could be something else. You might not have reacted, or you might be waiting for the storm to come, or your reactions might have been masked by the fact that you are already having trouble. Or you could have a reaction to foods that you are consuming TOGETHER, even if you have no trouble with them apart - yeah, that was a lovely conversation for my allergist to have with me. Just makes a food journal that much harder, eh?


The fact that symptoms improve on a gluten-free diet is a good sign for celiac disease, I would think. Although it could be something else. Perhaps something that you have stopped eating along with the gluten, you know?

However, at least for me, when I'm reacting already, my reactions to more gluten are typically all screwed up. I've tried something when I've been mildly glutened already, and it didn't seem to do much to me. Maybe a little, but not much. But when I try it again - same bag even - after I'm all healthy and healed up? I react like crazy. I don't know if that's normal for celiacs or not, honestly, but it's definitely what happens to me.

Are you able to get better right now with the bloating at all? If you can, a better test might be to do a gluten pig out sans bloating and see what happens. Otherwise, like you've observed, it's hard to tell if it actually affected you much or not.

And you might want to keep the first test simple, like wheat pancakes with just ingredients you know are good. Otherwise, with all the issues you are concerned about, you may be eating some of a 'bad' food along with the processed gluten food you're consuming, you know?


...although on the good side, at least all that gluten it didn't make you even more sick so far!
  • 1

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


#4 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 11 August 2011 - 04:14 PM

All those symptoms, thyroid disease, plus "borderline RA and lupus" and Double DQ2 genes ---and feeling better OFF gluten?? hmm...yes, it sounds like celiac--or at best, gluten intolerance.... so, I am not sure why you would purposefully want to make yourself sick :blink:

but ...since you already did it, I guess you'll find out what happens in the coming days.

...sure hope it's not too bad a reaction. Good luck, hon.
Keep us posted.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#5 shayre

 
shayre

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 188 posts
 

Posted 11 August 2011 - 05:23 PM

All those symptoms, thyroid disease, plus "borderline RA and lupus" and Double DQ2 genes ---and feeling better OFF gluten?? hmm...yes, it sounds like celiac--or at best, gluten intolerance.... so, I am not sure why you would purposefully want to make yourself sick :blink:

but ...since you already did it, I guess you'll find out what happens in the coming days.

...sure hope it's not too bad a reaction. Good luck, hon.
Keep us posted.

Well, I felt a little stupid glutening myself. However, I just wanted to know what my gluten symptoms were EXACTLY...aside from other symptoms from problems like lupus or RA. Whenever, I would start feeling bad, I would wonder if I got exposed to gluten or is it a Lupus flare up, etc. Plus, sometimes I get brain fog and feel generally sick, most times I have gut issues, and then sometimes I get all of the nerve, muscle and joint pain...and sometimes all of it together. I just wanted to know what is gluten specifically doing to me, so that I know the difference in the future. And...I wanted to make sure that I had enough in my system to NOT misinterpret the results! It's now been 7 hrs...and nothing. I am completely shocked at this point. I will wait 48 hrs or so to see what happens. I don't think that I've heard anyone have a delay more than 2-3 days. My hubby and I have a date on Sunday. If I don't react by that time, then we discussed going to one of our favorite Italian restaurants and having a pasta dish and bread to see if I react to having the repeat exposure. That should cover both issues that GlutenFreeManna and TH had discussed above. If I don't react after that, then this probably isn't celiac disease or gluten sensitivity. I will then be visiting ALL of my doctors, and maybe some new ones...will have no idea where to go from there. TH...I was already planning on getting some blood allergy testing, so maybe that will shed some light on some things. Skin tests showed nothing a couple of years ago.
  • 0

#6 love2travel

 
love2travel

    Čeznem da se u Hrvatskoj!

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,847 posts
 

Posted 11 August 2011 - 05:56 PM

Well, I felt a little stupid glutening myself. However, I just wanted to know what my gluten symptoms were EXACTLY...aside from other symptoms from problems like lupus or RA. Whenever, I would start feeling bad, I would wonder if I got exposed to gluten or is it a Lupus flare up, etc. Plus, sometimes I get brain fog and feel generally sick, most times I have gut issues, and then sometimes I get all of the nerve, muscle and joint pain...and sometimes all of it together. I just wanted to know what is gluten specifically doing to me, so that I know the difference in the future. And...I wanted to make sure that I had enough in my system to NOT misinterpret the results! It's now been 7 hrs...and nothing. I am completely shocked at this point. I will wait 48 hrs or so to see what happens. I don't think that I've heard anyone have a delay more than 2-3 days. My hubby and I have a date on Sunday. If I don't react by that time, then we discussed going to one of our favorite Italian restaurants and having a pasta dish and bread to see if I react to having the repeat exposure. That should cover both issues that GlutenFreeManna and TH had discussed above. If I don't react after that, then this probably isn't celiac disease or gluten sensitivity. I will then be visiting ALL of my doctors, and maybe some new ones...will have no idea where to go from there. TH...I was already planning on getting some blood allergy testing, so maybe that will shed some light on some things. Skin tests showed nothing a couple of years ago.


It still could be gluten intolerance or celiac - I had no reactions whatsoever when I pigged out on gluten on my nearly four-month challenge. Zero. Zip. I questioned whether I had celiac at all but realize now that some people are what are called silent celiacs. My biopsies were all positive - my villi were severely damaged. Hopefully you are not but I just wanted to point out it is still unfortunately possible.
  • 2
<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#7 come dance with me

 
come dance with me

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 401 posts
 

Posted 11 August 2011 - 06:13 PM

It can take up to 24 hours for some symptoms with my 8yo or up to 48 hours for other symptoms to start so prepare yourself for sickness!
  • 0
Lord please give me patience, because if you give me strength, I may just beat the living crap out of someone...

#8 shayre

 
shayre

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 188 posts
 

Posted 11 August 2011 - 06:18 PM

It still could be gluten intolerance or celiac - I had no reactions whatsoever when I pigged out on gluten on my nearly four-month challenge. Zero. Zip. I questioned whether I had celiac at all but realize now that some people are what are called silent celiacs. My biopsies were all positive - my villi were severely damaged. Hopefully you are not but I just wanted to point out it is still unfortunately possible.

I am very curious...what were your symptoms before getting diagnosis? What caused you to be tested? It's still too early to tell, but I guess that I wonder why I was so sure that I could tell a difference with minute amounts of gluten from cross contamination...then nothing when I pig out on it. 4 months on gluten challenge...I would never have dreamed of it! I wouldn't have thought that I'd last for more than a few days.
  • 0

#9 love2travel

 
love2travel

    Čeznem da se u Hrvatskoj!

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,847 posts
 

Posted 11 August 2011 - 06:29 PM

I am very curious...what were your symptoms before getting diagnosis? What caused you to be tested? It's still too early to tell, but I guess that I wonder why I was so sure that I could tell a difference with minute amounts of gluten from cross contamination...then nothing when I pig out on it. 4 months on gluten challenge...I would never have dreamed of it! I wouldn't have thought that I'd last for more than a few days.


My sister was diagnosed with gluten intolerance so I requested bloodwork and biopsies. As I had no symptoms whatsoever (except in retrospect I suspect my miscarriages were all related) I was quite happy to eat gluten for that long (I love food and am an avid foodie). I was still sort of in denial because I didn't get sick at all. It still makes it difficult to know whether I have been glutened or not! I just cannot tell. :(
  • 1
<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#10 shayre

 
shayre

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 188 posts
 

Posted 11 August 2011 - 06:31 PM

Oh, that's a hard one! Wish I had the answer! I think it's kind of a 'yes' to all questions. It could be something else. You might not have reacted, or you might be waiting for the storm to come, or your reactions might have been masked by the fact that you are already having trouble. Or you could have a reaction to foods that you are consuming TOGETHER, even if you have no trouble with them apart - yeah, that was a lovely conversation for my allergist to have with me. Just makes a food journal that much harder, eh?


The fact that symptoms improve on a gluten-free diet is a good sign for celiac disease, I would think. Although it could be something else. Perhaps something that you have stopped eating along with the gluten, you know?

However, at least for me, when I'm reacting already, my reactions to more gluten are typically all screwed up. I've tried something when I've been mildly glutened already, and it didn't seem to do much to me. Maybe a little, but not much. But when I try it again - same bag even - after I'm all healthy and healed up? I react like crazy. I don't know if that's normal for celiacs or not, honestly, but it's definitely what happens to me.

Are you able to get better right now with the bloating at all? If you can, a better test might be to do a gluten pig out sans bloating and see what happens. Otherwise, like you've observed, it's hard to tell if it actually affected you much or not.

And you might want to keep the first test simple, like wheat pancakes with just ingredients you know are good. Otherwise, with all the issues you are concerned about, you may be eating some of a 'bad' food along with the processed gluten food you're consuming, you know?


...although on the good side, at least all that gluten it didn't make you even more sick so far!

Hi. What bloating test are you talking about? I don't think that I understand what you mean? No to your question. The bloating has been really bad lately and getting worse...along with the constipation issues. I thought that it worsened from accidental gluten exposure. Now I'm not sure.
  • 0

#11 Skylark

 
Skylark

    Glutenologist

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,490 posts
 

Posted 11 August 2011 - 07:36 PM

The median time to villous atrophy for celiacs eating gluten is two or three months (depends on the study). At that point your villi are flat, malabsorption sets in, and you get all the deficiency diseases. There are plenty of people in studies who notice only minor symptoms on gluten challenge. A little bloating, a little stomach upset. At biopsy time, the damage is done and they would be back to fully ill a few months later.

You may have to challenge for a while, which also means you may have to recover for a while. Perhaps you could do this under medical supervision and get proper celiac testing too.
  • 1

#12 beebs

 
beebs

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 684 posts
 

Posted 12 August 2011 - 12:55 AM

The median time to villous atrophy for celiacs eating gluten is two or three months (depends on the study). At that point your villi are flat, malabsorption sets in, and you get all the deficiency diseases. There are plenty of people in studies who notice only minor symptoms on gluten challenge. A little bloating, a little stomach upset. At biopsy time, the damage is done and they would be back to fully ill a few months later.

You may have to challenge for a while, which also means you may have to recover for a while. Perhaps you could do this under medical supervision and get proper celiac testing too.


Yes - I have heard the above. I was questioning my Dr wether I should a challenge or not. She thinks not but I kept harping on about it. I just said to her that I wouldn't want to risk intersussception again and she said that it may not happen if I got glutentend again now because my intestines would have healed in the 7 months gluten-free.....that may be what is happening to you?
  • 0
HLA DQ8, gluten-free since January 2011

#13 eatmeat4good

 
eatmeat4good

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,699 posts
 

Posted 12 August 2011 - 02:01 AM

If you have been gluten free for a long period of time, the antibodies die down. That is what we want to have happen and that is what DOES happen when you are successfully gluten free for a long time. That could explain your lack of reaction to ingesting a large amount of gluten. But don't underestimate this Beast called Celiac. If you are, and you keep eating gluten, all your symptoms will return plus new and more evil ones too. Just because there isn't an immediate reaction doesn't mean you are not Celiac. They used to think that children outgrew this disease and it was due to the very thing you are experiencing. Their antibodies had died down, the body was no longer in high alert and it takes some time for the auto-immune response to kick in. They appeared to be normal...even while eating gluten...so they must have outgrown it right? Wrong. Later they realized that it is a lifelong disease and the risk of lymphoma's and other auto-immune diseases is real. But when your body realizes it has been glutened, it will call in all the troops and you could have a major reaction later (if you are lucky you will have a big reaction so you can know). How much later? Everyone is different. But maybe you won't get any "glutened" reaction....maybe you will just get another auto-immune disease. From what I have read you can't figure out what your reaction will be to glutening, because it can change over time and it can change based on how much gluten you ingest and for how long you ingest it. It is the ongoing consumption of gluten that will cause the ongoing damage....IF you are Celiac.

It is possible that it is something else...histamine, salicylates, fructose, etc. But if you continue to eat gluten I would for sure be tested regularly to see what your gliadin response is and to monitor your antibodies. If you never make them, maybe you weren't Celiac. But with all of your auto-immune diseases...I would guess it would just be a matter of time until you stack on another one. I hope you will keep posting your reactions or lack of reaction. Very interesting.
  • 1
Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#14 a1956chill

 
a1956chill

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,365 posts
 

Posted 12 August 2011 - 03:03 AM

You probably did consume soy, in the chocolate (if the candy bars were chocolate )and fried foods (soy oil)

It takes me about 26 hours to react to glutening (other then bloating )
  • 0

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#15 dilettantesteph

 
dilettantesteph

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 3,035 posts
 

Posted 12 August 2011 - 05:06 AM

I'm wondering if you are going to come back here complaining of symptoms. I don't think that you were stupid to gluten yourself on purpose. Since you don't have medical testing data to support eliminating gluten, it would seem the intelligent thing to do to be sure.

I agree with Skylark that if you can keep this up for a couple of weeks, get yourself tested. Is that how long a gluten challenge should be, experts? I've heart two slices of bread a day for two weeks.

It would be good to know for sure.
  • 1




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: