Just Glutened Myself Alot On Purspose To Identify Reactions

[shayre]

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!!!!!!!

[GlutenFreeManna]

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!

[T.H.]

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!

[IrishHeart]

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

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.

[shayre]

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

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.

[love2travel]

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.

[come dance with me]

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!

[shayre]

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.

[love2travel]

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.

[shayre]

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.

[Skylark]

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.

[beebs]

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?

[eatmeat4good]

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.

[cahill]

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 )

[dilettantesteph]

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.

[krystynycole]

It could very well be silent celiac or villous atrophy, but I won't go on about that because others have already talked about it.

It could also be related to PCOS. I have a friend of mine who was diagnosed with PCOS and a thyroid issue shortly before I went gluten free. We had very similar symptoms and I even considered getting tested for PCOS and thyroid. Maybe something to talk to your doctor about.

[love2travel]

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.

The equivalent of FOUR pieces of bread for THREE to FOUR MONTHS must be consumed for accurate results.

[shayre]

Hi all! Okay it in 3 hrs it will be 24 hrs since gluten ingestion began. Still...nothing. I did eat a big bowl of raisin bran last night for dinner too. I am less bloated this morning, but I am always less bloated when I get up. I actually just had a BM...another surprise. I am steering clear of any more gluten though until I see a response or not.

I did check with my doctors about the PCOS and thyroid. None of them could explain how they would possibly manifest in that way. So I don't know. I don't know if Lupus can effect your digestive system or not, and I haven't been diagnosed...only speculation that it's mulling around in my body trying to make up it's mind. I still have symptoms of celiac disease currently, and have had them off and on. I don't think that I've ever reached 100% of my old self yet on any day that was good, but i get close now and then. I have had at least 3 different occassions where I consumed something with less than 20ppm gluten contamination in them over time. Each time, I had the same result...after a week or two...I kept going downhill everyday...feeling more sick and more sick. Then I'd figure the source out, and eliminated it...then I'd immediately start getting better. It seemed so clear. I would have a reaction to just standing in a bakery for a few minutes...usually facial flushing, brain fog and a little sick to my stomach. If I normally have those immediate reactions to this very day, then THAT is why I can't figure out why I'm not reacting to the large amount of ingested gluten. I guess that if I had reached a point where I didn't have any symptoms or reactions, then the "silent" theory would make sense to me. However, since I still have reactions and symptoms that come one...seemingly with gluten cc...then I am confused. I think that anything is definitely possible, whether or not I understand it...but SOMETHING should make some sense.

I saw a secondary GI specialist in December. They did a scope, biopsy, and a pill camera. I was off of gluten for a about a year and a half at that point(but before house was gluten free), and I was still having SOME symptoms and gut issues that I thought should be resolved by then. They saw nothing. I was already confused by that. This just complicates the confusion. If my gut were healed, then why am I still having gut issues...and other symptoms that SEEM to improve going gluten-free? The doc had told me that there are other less defined autoimmune diseases of the gut, but they didn't see any of those either. I saw something about "sub-clinical" celiac disease. Does anyone know what that is? Could it be something that effects all of my enzyme production? How would that effect my whole body?

Well, I am taking in every last bit of information and advice that you all are giving:) Thank you for that. I guess that the clock is ticking and I still have some time to wait and see. I will keep you posted.

[GlutenFreeManna]

Hi all! Okay it in 3 hrs it will be 24 hrs since gluten ingestion began. Still...nothing. I did eat a big bowl of raisin bran last night for dinner too. I am less bloated this morning, but I am always less bloated when I get up. I actually just had a BM...another surprise. I am steering clear of any more gluten though until I see a response or not.

I did check with my doctors about the PCOS and thyroid. None of them could explain how they would possibly manifest in that way. So I don't know. I don't know if Lupus can effect your digestive system or not, and I haven't been diagnosed...only speculation that it's mulling around in my body trying to make up it's mind. I still have symptoms of celiac disease currently, and have had them off and on. I don't think that I've ever reached 100% of my old self yet on any day that was good, but i get close now and then. I have had at least 3 different occassions where I consumed something with less than 20ppm gluten contamination in them over time. Each time, I had the same result...after a week or two...I kept going downhill everyday...feeling more sick and more sick. Then I'd figure the source out, and eliminated it...then I'd immediately start getting better. It seemed so clear. I would have a reaction to just standing in a bakery for a few minutes...usually facial flushing, brain fog and a little sick to my stomach. If I normally have those immediate reactions to this very day, then THAT is why I can't figure out why I'm not reacting to the large amount of ingested gluten. I guess that if I had reached a point where I didn't have any symptoms or reactions, then the "silent" theory would make sense to me. However, since I still have reactions and symptoms that come one...seemingly with gluten cc...then I am confused. I think that anything is definitely possible, whether or not I understand it...but SOMETHING should make some sense.

I saw a secondary GI specialist in December. They did a scope, biopsy, and a pill camera. I was off of gluten for a about a year and a half at that point(but before house was gluten free), and I was still having SOME symptoms and gut issues that I thought should be resolved by then. They saw nothing. I was already confused by that. This just complicates the confusion. If my gut were healed, then why am I still having gut issues...and other symptoms that SEEM to improve going gluten-free? The doc had told me that there are other less defined autoimmune diseases of the gut, but they didn't see any of those either. I saw something about "sub-clinical" celiac disease. Does anyone know what that is? Could it be something that effects all of my enzyme production? How would that effect my whole body?

Well, I am taking in every last bit of information and advice that you all are giving:) Thank you for that. I guess that the clock is ticking and I still have some time to wait and see. I will keep you posted.

If I'm understanding you correctly then you were tested after being gluten-free for a year and half? If that is the case then it's no woder that you had negative biopsies! I think it may be time to do a gluten challenge for 2-3 months and get proper testing redone. You need to eat the eqivalent of 3-4 slices of bread everyday for 3 months to get accurate testing. Since it sounds like your symptoms are not very severe then you may want to do this.

As far as your bloating and constipation...how much fiber do you get in your diet when you are gluten-free? If you decide to go back to gluten-free and stick with it, maybe consider adding a fiber supplement such as psyllium husk to help with the constipation. Also look into probiotics, especially if you have been on antibiotics for any length of time in the past.

[love2travel]

If I'm understanding you correctly then you were tested after being gluten-free for a year and half? If that is the case then it's no woder that you had negative biopsies! I think it may be time to do a gluten challenge for 2-3 months and get proper testing redone. You need to eat the eqivalent of 3-4 slices of bread everyday for 3 months to get accurate testing. Since it sounds like your symptoms are not very severe then you may want to do this.

Precisely! No wonder they were negative. Do not forget that there is an extremely high nevative result possibility. Not only that but only about 40% of biopsies done in the US and Canada are done correctly. It really is a sad state of affairs...

[shayre]

If I'm understanding you correctly then you were tested after being gluten-free for a year and half? If that is the case then it's no woder that you had negative biopsies! I think it may be time to do a gluten challenge for 2-3 months and get proper testing redone. You need to eat the eqivalent of 3-4 slices of bread everyday for 3 months to get accurate testing. Since it sounds like your symptoms are not very severe then you may want to do this.

As far as your bloating and constipation...how much fiber do you get in your diet when you are gluten-free? If you decide to go back to gluten-free and stick with it, maybe consider adding a fiber supplement such as psyllium husk to help with the constipation. Also look into probiotics, especially if you have been on antibiotics for any length of time in the past.

First, I went through scope and biopsy right after I went gluten free. It hadn't been long, and I certainly hadn't worked through all of the areas where gluten might be. At that time, I had no idea what celiac disease really was. I was trying out gluten elimination, because I was testing maybe just having an allergy. When the biopsy came back negative, I dismissed it. Then I started doing the research, and found that I fit right in here. I went back to the doc with my consistent GI problems and frustration. His explaination was that the damage to my intestines meant that I wasn't producing the enzymes to digest any food, so it would sit undigested in my system causing bloating and constipation. He said that biopsies can be patchy, and the negative test doesn't mean that I don't have it. I had gotten the genetic test done for my kid's GI doc. When my doctor found out about my genetic predisposition and symptoms. He said that he knows that I have it, but he just can't prove it on paper. It was a year and a half later, that I was retested with another doc and they saw nothing. But I had made that appt. in the first place, because I was still having symptoms and digestive issues. All of those things had been much improved, but still it was hanging around giving me grief. That doc said, that all she could treat me for was IBS and wanted to put me on anti-depressives to desensitize nerves in my gut. I don't have depression issues, and she kept referring to pain in my gut with IBS that I don't have. Her explaination didn't feel in the least bit accurate, so I dismissed it. Do you know how things just feel right or not right in your heart? I felt that she was going down the wrong path.

The confusion is why I'm still not digesting food (supposedly) or having bloating/const issues with no sign of damage. The other symptoms I could relate to gluten sensitivity or allergy if need be. Yes, fiber has been an issue, but I have dealth with that aspect of my health since childhood...severe constipation and impaction. The doctors put me on everything high fiber, supplements, and medications over the years. Nothing really helps. The medication helped for a while, but then stops helping. Going gluten free helped a lot. For the first time, I was having a BM everyday. Then that stopped too. I take probiotics and enzymes, but I am looking into taking extra. They definitely help me, and if I miss a couple of days of probiotics I can tell. I don't take antibiotics, and haven't since before I went gluten free. The curious thing though, is that not long after my son was born...I was in sooooo much abdominal pain. Now I had a c-section, but I knew what that felt like from the first c-section. The pain wasn't subsiding, and it was getting worse....along with the nueromuscular problems. I was scoped, CT'd, ultrasounded, MRI'd, bloodtested and x-rayed... and no one knew why I was in so much pain. My primary doc said that he just wanted to experiment with a really strong antibiotic to see what happened. It worked. So once I figured out celiac disease, then I just thought that it must have been a gut infection or bacterial overgrowth. That explaination would also go right along with celiac disease. Now before all of this, my infertility specialist diagnosed me with classic PCOS. However, he said that it was a problem with the enzyme and not insulin. He said that thin girls with PCOS have trouble with the enzyme, and girls who have gained a lot of weight have trouble with the insulin. So where does that leave my enzyme production elsewhere in the body. Is there a disorder where enzyme production is affected? Could gluten just be causing me to have enzyme malfunction at different places in my body at a more cellular level...as opposed to attacks on the villi? So many questions.....

And my symptoms can be very severe. I can be rendered to the couch unable to take care of myself or my kids very quickly. That is why I have not yet done the gluten challenge...I'm terrified of it! As long as I stay on a very strict gluten-free diet, the symptoms come and go sometimes in a very mild way. Yet, once in a while, I'll wind up on the couch again. All along, I am thinking that it's gluten exposure...and have usually been able to track it...at least I thought so. If I don't have reactions to this gluten exposure from yesterday, and then not to a repeat exposure...then I will opt for the challenge and blood allergy testing. I have a friend who went through similar gut issues only, but she was also feeling depressed. She just did a blood allergy test that revealed an allergy to almost everything that she was eating. She ate very healthy. She also tested positive for gluten allergy. All of her gut issues have resolved now, and she is no longer bloated either. She doesn't know whether gluten is an allergy or celiac disease. Her doc told her that it wasn't celiac disease, but I asked her how in the world he would know that from just a blood test. No one has scoped her. Anyway, maybe blood tests my reveal something for me too.

[shayre]

Precisely! No wonder they were negative. Do not forget that there is an extremely high nevative result possibility. Not only that but only about 40% of biopsies done in the US and Canada are done correctly. It really is a sad state of affairs...

What is "correctly"? If I have another, then I will try to make sure that it's done right.

Well, at 2:30 today it will be 48 hrs. So far...nothing. I'm exhausted, but I don't think that has anything to do with gluten. I took some Benadryl yesterday, and it wiped me out. Then my 2 yr old kept me up all night last night. I had a little bit of leg aches and slight restless feeling in them, but that is unchanged, as I felt that way all week already. Does anyone think that their reactions take longer than 48 hrs? Counting down...

[love2travel]

What is "correctly"? If I have another, then I will try to make sure that it's done right.

Well, at 2:30 today it will be 48 hrs. So far...nothing. I'm exhausted, but I don't think that has anything to do with gluten. I took some Benadryl yesterday, and it wiped me out. Then my 2 yr old kept me up all night last night. I had a little bit of leg aches and slight restless feeling in them, but that is unchanged, as I felt that way all week already. Does anyone think that their reactions take longer than 48 hrs? Counting down...

Sorry - I should have clarified. When biopsies are done most surgeons only take 3-5 biopsies when it is essential that at least 8-11 (or even more) be taken from all over. It can be likened to doing soil samples - you must take many of them to get the true picture.

This experiment of yours is truly an interesting one! Curious to see how this turns out for you. Hope you are having a good day!

[livelifelarge24]

How dis you end up? I don't think you're crazy, I struggle with multiple issues & often wonder which symptoms are from which. it can be very frustrating! It usually take me 24 hours for the diziness & emotional symptoms and then another 24 & the pain & GI issues start. What was your experience?

[pricklypear1971]

I agree, if you ate Fair Food (yum), you got more than gluten.

I've thought of how to do a challenge and came to the conclusion I'd have to buy very good plain bread (wheat, salt, water, yeast, sugar) and eat ONLY that in addition to a gluten-free diet for a true wheat-only challenge.

So, if you're eating "normal" foods you'll never know if it's just wheat.