Gluten Challenge With Ridiculous Results

[Marz]

So I purposefully challenged with gluten after a week feeling so much better off gluten. It was with cake, which was a mistake - should have gone with a plain piece of bread.

So reaction was nausea and slighly upset stomach 30 min afterwards. I though, hey not too bad... And then the next day... Stomach started emergency procedures just after lunch. Diarrhea for the first time the whole week, excrutiating pain, cramps, drawn out over a few hours of loo visits. By 9 that night I was feeling better, if shakey.

So the problem is - would I really have such a bad reaction to gluten? The entire episode feels similar to my chicken poisoning episodes (I'm completely intolerant to chicken). I've started getting similar reactions to egg, and the cake would definately have had egg in it.

Secondly, I've read some nay-Sayers say that damage from gluten couldn't possibly heal within a week, and I'm concerned that it's just a placebo effect. Or maybe I've been avoiding egg this week by making my own lunch (I usually eat at my work's caffeteria) and maybe this is all an egg allergy that I'm now really reacting badly to?

Basically the only way I'll be satisfied is to eat plain wheat minus the egg and see what happens?

What do you guys think?

[ravenwoodglass]

Well now you know why when doctors are doing a directed challenge they order you to do it with a single ingredient food. I used cream of wheat and triscuits. Yes the severity of the reaction was normal. Your body had a week of nothing with what it is forming antibodies to. It is trying to tell you in no uncertain terms you were doing the right thing. My first challenge when under the care of the allergist was two weeks after eliminating gluten and a whole lot of other items and I had the same reaction although for me it was three days after adding it back in. My second challenge ordered by the GI had even worse effects. I lay bleeding on the bathroom floor on the day of my endo.

[nora-n]

If you have been gluten free for a week, then you get what is known as freshly activated T cells when trying gluten again.

They are even developing a new test that works just like that, either be gluten-free or go gluten-free and then test for freshøy activated T cells in the blood. Only celiacs get them.

[ravenwoodglass]

If you have been gluten free for a week, then you get what is known as freshly activated T cells when trying gluten again.

They are even developing a new test that works just like that, either be gluten-free or go gluten-free and then test for fresh

[Marz]

Quick question guys - I didn't want to start a whole new post for this.

I'm going to get the blood tests done tomorrow - will the results be invalid from the gluten-free week? I'm really not keen to start wolfing down bread after yesterday.

I'm definately going to insist on total IgA levels, since my IgE levels are low, not sure if there's a connection between the two.

The blood test is really only for my own sake - I need to know if I'm producing antibodies/or my IgA levels are too low to get a correct result. Otherwise I'll always wonder if I can cheat with some wheat starch every now and then.

[nora-n]

marz, the antibodies might have gone down a bit from the gluten free experiment. Hard to say, everybody is different. IgG type antibodies hang around much longer so maybe you can talk them into running both due to the going gluten free experiment....maybe.

The IgG antibodies can hang around for up to a year after going gluten-free, and we have seen that on the forums as people are puzzled as to why the IgG type antibodies are still high up til one year.

About the a ctivated T cells, I am sure they only work with consuming gluten otherwise they would have said so.

Some patients ahve been to Dr. Greene and he has take biopsy samples and incubated them with gluten and they change only in celiacs.

That one works without a gluten challenge.

[Marz]

Ok, so my doctor is awesome (GP not specialist) I went back to him telling him that the gluten-free diet has really helped, and that I wanted to get the tests done. He started talking about IgE gluten levels, and I corrected him and said that for Celiac disease - they test for IgA and IgG levels, it's not an allergy etc.

So after a brief discussion where I described the tests I wanted done etc, and now before my antibody levels go down, he says that he's very impressed with my extensive research, thanking me for educating him regarding this etc. So his attitude was wonderful. Was worried I was going to get the what-do-you-know shrug He sent me off to a hospital lab with a note basically saying I should pick the tests I wanted to do.

I really don't think this is something our GPs over here even know about, to be honest.

At the labs, they were pretty much just as clueless, and eventually just knocked it down to IgA anti-gliadin and total IgA, because the others were either very expensive, or non-existant (They don't do IgG testing!). I also have to pay transport fees because the samples have to be flown over to another city for testing.

Sooo, hopefully I'll have some accurate blood results to post soon.

[ravenwoodglass]

Ok, so my doctor is awesome (GP not specialist) I went back to him telling him that the gluten-free diet has really helped, and that I wanted to get the tests done. He started talking about IgE gluten levels, and I corrected him and said that for Celiac disease - they test for IgA and IgG levels, it's not an allergy etc.

So after a brief discussion where I described the tests I wanted done etc, and now before my antibody levels go down, he says that he's very impressed with my extensive research, thanking me for educating him regarding this etc. So his attitude was wonderful. Was worried I was going to get the what-do-you-know shrug He sent me off to a hospital lab with a note basically saying I should pick the tests I wanted to do.

I really don't think this is something our GPs over here even know about, to be honest.

At the labs, they were pretty much just as clueless, and eventually just knocked it down to IgA anti-gliadin and total IgA, because the others were either very expensive, or non-existant (They don't do IgG testing!). I also have to pay transport fees because the samples have to be flown over to another city for testing.

Sooo, hopefully I'll have some accurate blood results to post soon.

Please keep in mind that even with full blown autoimmune attack and a full gluten diet up to at least 20% of us will show a false negative with blood testing.

[nora-n]

The most common celiac test is the ttg test, tissue transglutaminase 2.

Soemtimes they call it endomysium antibody test but it is actually the ttg test.

Lately I have seen they call the new and maybe more accurate deamidated gliadin test for antigliadin test.

Which tests were available?

The old antigliadin antibody test is only able to pick up about 60% of full-blown celiacs but is useful for testing small children who have not developed any ttg antibodies yet.

[Marz]

The most common celiac test is the ttg test, tissue transglutaminase 2.

The old antigliadin antibody test is only able to pick up about 60% of full-blown celiacs but is useful for testing small children who have not developed any ttg antibodies yet.

Oh well, I ordered IgA anyway. IgG wasn't available (They were like "Ig what??"). ttg was available but expensive. I didn't want to go with ttg only, because I was worried if I was in the beginning stages, I'd have IgA but not ttg yet.

My reasoning was that if IgA is positive, that's enough for me to know I'm producing antibodies and I don't want anything to do with gluten ever again. If it's negative, and my total IgA levels are high enough, then surely that rules out classic celiac disease - intestine being destroyed etc? My symptoms are 99% GIT, no neurological problems, not hypothyroid, no RA, not really fatigued or have brain fog etc. Occasional headaches linked to histamine intolerance, but that's it.

I'll see what my specialist says next week, but not holding my breath that he can actually help me. He's very much on the IBS bandwagon with me at the moment.

[nora-n]

okay you ordered AGA IgA, antigliadin IgA and total IgA?

[Marz]

Sorry for not being specific, I ordered anti-gliadin igA and total igA. Not sure what AGA is but they only had the ttg from the list of tests I had. It was a very frustrating experience, had to wait half an hour for them to look up the test codes and phone the lab for details on what the test required, so I unfortunately just went with those to hurry things up. My gp was clueless, just told me to get whatever tests I wanted, and the nurses at the lab were equally clueless.

At this point I just want to stop bleeding money! No more tests, elimination diet is free. How useless are these tests when they're

a) not trusted by some doctors when positive - biopsy is "gold standard"

20 or 40 % sometimes false negative for a true celiac, so you can't even trust a negative result

[nora-n]

Yes that is what I meant, I was not clear, AGA = short for antigliadin antibody.

Yes, it can be confusing and frustrating.

To add to the confusion, some labs call tests almost fantasy names, like some labs list endomysium IgA and IgG and there is no such thing as endomysium IgG so they mean ttg IgA and ttg IgG, and the newest fad is calling the new deamidated gliadin test for antigliadin antibody, which it is not, because it performs a little bit better than the ttg test.

The old antigliadin test is known to miss 60% of biopsy proven celiacs.

[Marz]

Results are negative, not a surprise

Gliadin IgA

[nora-n]

So sorry the test turned out negative, but the AG test does only find some celiacs.

Yes, the article does explain a lot.

The reason the doctors (those who decide the international concensus on celiac testing) are so strict, old-fashioned, or whatever, might be that we in several countries get money from the government if diagnosed celiac.

That is why they ahve to be so strict.

Here, they get about 200 dollars a month.

My daughter does, I do not have an official diagnosis.

So they must have the same rulse world-wide. Must diagnose severe damage, then you are allowed money.

[Skylark]

At this point I just want to stop bleeding money! No more tests, elimination diet is free. How useless are these tests when they're

a) not trusted by some doctors when positive - biopsy is "gold standard"

20 or 40 % sometimes false negative for a true celiac, so you can't even trust a negative result

If you get a really good doctor, he'll tell you a positive response to the gluten-free diet is as good a "gold standard" as anything. Good luck with your elimination!

[Marz]

So I *finally* got to see my gastro, it takes forever to get these things done 0.o

Biopsy from SI looked normal.

He said the IgA test is not very accurate, and ordered a ttg test for me, which I should've had done in the first place.

He's a bit old school - says celiac disease is uncommon, and he wants a definite diagnosis for me because apparently "the diet is very restricted" So if the test is negative, he's going to do a more in-depth endoscopy taking more biopsies throughout the small intestine. So at least he's aware that a single sample from one area is not sufficient

He seems quite confident that there's a gluten problem, based on my sudden remission of all symptoms on a gluten free diet. He also suggested that *after* the test comes back negative, I can try re-introducing gluten slowly and cautiously, taking note of my reaction. Hmmm... not sure if I'll follow that advice!

[Marz]

Oh, and as for the gluten challenge - I had some wheat for cereal two days ago, and some cous-cous yesterday. Both times I had stomach ache in the afternoon afterward. ("Glass in intestine" feeling). Strangely enough, no diarrhea, which I had expected. That's been the extent of my stomach problems, other than a "just not right" stomach feeling.

However... Since then strange aches and pains have started. My "Carpal Tunnel" wrist has flared up, even though I'm not as busy as I usually am when it starts hurting (I work on a computer the whole day, every day). Moderate headaches ever since. Strange aches in my feet "bones", arm muscle "twitching", just various weird stuff really...

Anxiety/irritability/depression also increased, on both days I was about to cry at a drop of a hat. Started getting that "it's too hard to carry on living" feeling/thoughts, which I just ignored, don't worry! Compare that super tired/depressed gal with the one last week that was cleaning her house properly for the first time the whole month (!!! Yes, I've been so ill I couldn't even get myself to turn a vacuum cleaner on, and I go from that to scrubbing the kitchen floor!!?)

And my nose has been running a marathon, and together with sinus pain (and headache), has just made me feel terrible. It's that "I'm getting a cold" feeling, except the cold never comes, and I feel better today having been wheat free since yesterday.

I always thought it was *milk" that caused my sinus/nasal drip problems. I'll be super happy if it turns out to be gluten! I also noticed my histamine tolerance goes *way* down when I eat wheat. A piece of avo gives me severe jaw /sinus pain/headache when previously gluten-free I could eat a half avo without even a sniffle.

Ok /rant My husband has been super supportive, even suggesting I don't need to continue testing/endoscopies if I know gluten is the problem. In his words - "Why give the doctor more money when the diet is 'free'" ?

[ravenwoodglass]

) My husband has been super supportive, even suggesting I don't need to continue testing/endoscopies if I know gluten is the problem. In his words - "Why give the doctor more money when the diet is 'free'" ?

It does sound like you reacted to your mini challenge. To be a real challenge you need to eat gluten about 3 times a day for a week or until you react. Don't be surprised if you get D today or tommorrow as sometimes that part of the reaction is delayed. Also it sounds like you have a wise and supportive husband. I think he has given you some great advice.

[nora-n]

when on the gluten challenge, the intestines felit like barb wire in them, you mentioned glass. Must be the same thing.

And pain in knees and other places.

i looked over a diary I keep in google docs a while ago, and I had forgotten half of it or most of it. I do not recollect any hardships during the challenge, but when I looked at what I wrote back then, I had all these symptoms.

But then six weeks after starting hte challenge, I cold not feel my feet, I did not know where they were, and that scared me into go gluten free again. The biopsy was at five weeks (and of course too soon)

[Marz]

Hey Raven, looks like you are psychic

Was very sick this evening. Exactly the same as before gluten free - night-time d coupled with extreme pain, cramps and chills. Never had a *single* episode like this while gluten-free.

Since I haven't had anything remotely different the past week, it's definitely the wheat on Wednesday that got me.

Pretty much done with gluten challenges, this seems enough for me to stay clear of gluten. It's funny, I always told myself while trying to figure out what's wrong with my stomach - "when you find the problem, it will explain everything!". It was more to cheer myself up when I wanted to give up. You have no idea all the things I've investigated - histamine intolerance, fructose malabsorption, onion/garlic intolerance, lectins, candidia, parasites, wheat/milk allergy (I was close, but was still eating rye and oats at the time!)

Now I've found the problem. Yes, it does explain 90% of my symptoms. I'm just so grateful to every one on this forum for their encouragement, advice and suggestions. I hope to help other noobs in the same way!

Thanks for reading, and goodnight

[ravenwoodglass]

Hey Raven, looks like you are psychic

Not psychic just someone who has delayed reactions gut wise myself. It can make it hard to figure out what got us at times. It sounds like you have a definate pattern to your symptoms, I do too but didn't realize it when first diagnosed. I am sorry you had to get so sick but I am happy that you now know and can heal. I hope that you are feeling better soon.

[Skylark]

Welcome to the permanently gluten-free club. I never did gluten challenge for blood tests, as the stuff makes me too sick to care whether or not I'm celiac. I hope you feel better after the gluten reaction and continue to feel well gluten-free. By the way if you get the TTG test done right away you might still catch some antibodies since you've only been gluten-free a very short time.