Gluten Challenge?

[Steviac]

New here...

So I've been ill on and off for a pretty long while... well, long to me, but not nearly as long as some of you guys it would seem. I had a number of seemingly unconnected problems over the last 5 or so years, that was until they all presented themselves at once a couple of weeks ago.

After a bit of research, some sort of gluten intolerance seemed to be the answer. I looked into coeliac (yes, I'm english, not american ) - and things have started to make a lot of sense to me. SO I asked my doctor for a blood test.

After I'd had my test I decided to go gluten free - and the results were incredible - no more taking countless painkillers for headaches, rushing to the bathroom, rashes, drowziness, dizzyness... it all just lifted (ok - there were a few crampy pains, but what's that??)

So my test came back negative (which I'm told is more common then you'd expect?) - but my doctor still thinks I may be coeliac. Apparently only and IgA test was done. I asked about an IgG - she didn't seem to know much about it, but she contacted the lab to see if they could do that, and they seemed cool with that.

One problem... I have to do the Gluten Challenge... I'm sort of excited (I love a good challenge), but also terrified. Has anyone else gone through this? How did you feel? Was it worth it in the end?

Thanks for any opinions you can offer

[ravenwoodglass]

I don't know if your really going to want to hear this but since you asked....

My response to the gluten challenge was horrific. I had to do 2 at diagnosis. The first my symptoms returned full force after 3 days back on gluten and my doctor told me to stop the challenge and get back on the diet. I was then referred to my GI doctor who demanded another challenge. I was terrified because of my first response so he told me to just do one for 3 days right before the biopsy. Long story short I was laying on the floor bleeding when I was supposed to be at the biopsy. I got my diagnosis finally.

Not all respond as violently as I did and some are able to stick it out the full 2 to 3 months needed for a challenge. How you will react to one I can't say but only you can decide if it is worth continueing if and when you react. Do keep your doctor in the loop and call him as soon as you react and detail the results. Some doctors will stop the challenge if it makes us extremely ill.

[Steviac]

Thanks for the response! So sorry you had to go through that! I'm thinking if my response is that bad I would most certainly not last the whole challenge. Just the thought of having a final diagnosis one way or the other is enough to keep me going for now.

[ravenwoodglass]

Thanks for the response! So sorry you had to go through that! I'm thinking if my response is that bad I would most certainly not last the whole challenge. Just the thought of having a final diagnosis one way or the other is enough to keep me going for now.

I fully understand that as you can get some help with the expense of gluten-free foods in your country. Not everyone has as bad of a response as I did. Do be aware though that sometimes even with a challenge or on a full gluten diet we can have a false negative. If the diet helps do be sure to go back to it after your testing is done. I hope you get a definative diagnosis and that the challenge if you chose to do it is not too bad. Feeling better on the diet and then getting ill when challenging is a part of the diagnostic process, the most valid one there is IMHO.

I wish you the best and do feel free to ask any questions or to vent if needed. There are many very supportive folks here who have been in the spot your in.

[cassP]

my gluten challenge was kind of a waste of time!!! because my GI told me i only needed 2 weeks of the challenge- which apparently is not enough

tho- i dont think i could handle more than 2 weeks! i originally was happy for the challenge- cause i love my gluten so much! pizza & sandwiches YUM... i was crampy and bloated & backed up... it was actually tolerable. what WASN'T tolerable was the unforseen anxiety- i was ready to run my car over someone- it was RIDICULOUS... i am SUPER afraid of getting shots- and i came in to my appointment saying "Give me the shot now- i am DONE with this challenge- DONE"

and of course my results hadnt changed from the 1st tests.

[txplowgirl]

I managed to last 5 days. Couldn't take it anymore. My legs and ankles were swollen. My left knee hurt like it was trying to come out of the socket. Felt like someone had hit me with a baseball bat right between my shoulder blades. I had extreme fatigue. Irritable wasn't the word, more like the angry witch b**ch from hell as my boyfriend put it. Migraine, just an overall feeling of the blahs.

Nope, no testing for me. I KNOW what gluten does to me and I avoid it at all costs.

[Skylark]

Has your doctor done total IgA? The anti-gliadin IgG is only vaild in people who are IgA deficient. In people with normal levels of IgG, anti-gliadin IgG is usually indicative of intolerance or allergy, not celiac. You should have that done before you torture yourself for no reason.

I never challenged, but there is no particular advantage for adults who are finished with school in the US to have a formal diagnosis.

[sa1937]

Has your doctor done total IgA? The anti-gliadin IgG is only vaild in people who are IgA deficient. In people with normal levels of IgG, anti-gliadin IgG is usually indicative of intolerance or allergy, not celiac. You should have that done before you torture yourself for no reason.

I never challenged, but there is no particular advantage for adults who are finished with school in the US to have a formal diagnosis.

There's an interesting article on IGA deficiency in the new Oct/Nov issue of Living Without magazine that I just received yesterday. I just pulled up their website and unfortunately it's a subscriber's only article.

My daughter just had the newer DGP test done and tested highly positive for celiac, which I was concerned about as I felt she probably wasn't consuming enough gluten to get positive test results and I just couldn't imagine her going through a gluten challenge to find out (she's in grad school and couldn't afford to get really sick doing a challenge). Neither of us is IGA deficient.

[hazelbrown10]

I'm doing a gluten challenge right now, for six weeks at least. I had forgotten how weird brain fog is until it returned last night. When you see a wet dog shaking his whole body to get the water off... that's what I wanted to do to shake the brain fog off!

Anyway, I think my doctor has learned a lot about celiac since my last appointment! She even went to her office to get an article about celiac that she clipped out of a physician's magazine. She said that testing at our health center has changed a lot since I first went to see her two years ago. She was also completely honest about the percentage of false negatives on blood tests and biopsies. She also said she would refer me to a GI if my tests are negative or if I have more questions. I was really happy that she REALLY listened to me! She also said, "You're a scientist, right?" which I'm not

Good luck with your challenge if you do it!

[tarnalberry]

I did, but not of the variety that you did. I had blood work after two weeks of gluten free living resolved some symptoms that I had never thought of as being symptoms. The blood work was inconclusive (most docs would have read it as negative), so I tried eating gluten. That is, a tablespoon of vital wheat gluten in a bowl of yogurt. Not only was it disgusting in taste, it was clear that I had a reaction to it that evening. My reactions are not severe, but I didn't feel the need to continue banging my head against a wall when it was clear there was a wall there! I stopped eating gluten and my doc said "yeah, sounds like a good idea to not eat gluten". I still don't know if it's formally diagnosed in my charts (I have copies of the physician's notes from when I moved, but haven't read through it all), but don't really care - eating naturally gluten free foods requires no prescription, and still gives me a wide range of foods to eat. (Once you get past the habits of eating all the "normal" gluteny stuff. )

[sb2178]

Yeah, I had negative first round test results so did an elimination diet with a very short challenge while waiting for a second round of blood work to come back. It was miserable. I ate a bowl of plain pasta on a Monday night, a bowl of cereal on Tuesday morning, started to get tummy issues, and by Wednesday I was one sick puppy. Didn't even leave my apartment on Thursday or Friday. So, I think if I were to have a 2 month challenge, I would end up on short term disability or something.

Fortunately, whenever I am tempted to eat something I shouldn't, it's easier to stick to it because I have both the challenge experience AND the second round of blood work with numbers. I like numbers.

Good luck. Eat some really good thin crust pizza for me.

[Steviac]

Great replies from everyone - I appreciate all of your personal experience. I have to admit... I'm feeling majorly crappy already. Ulcers, headaches, joint pain... and I'm only 2 days in... Ah well, I'll see how it goes!

[cassP]

My daughter just had the newer DGP test done and tested highly positive for celiac,

what is "the newer DGP test" ???

[Skylark]

what is "the newer DGP test" ???

Anti-Deamidated Gliadin Peptide IgA. It tests for the presence of antibody to gliadin peptide (the problematic fragment of gluten) deamidated by tissue-transglutaminase. It's very specific for celiac. Normal intestines don't even make DGP, so non-celiac people don't have antibodies to it.

[sa1937]

Anti-Deamidated Gliadin Peptide IgA. It tests for the presence of antibody to gliadin peptide (the problematic fragment of gluten) deamidated by tissue-transglutaminase. It's very specific for celiac. Normal intestines don't even make DGP, so non-celiac people don't have antibodies to it.

Thanks, Skylark! You said it better than I could have.

[AnnaH]

Anti-Deamidated Gliadin Peptide IgA. It tests for the presence of antibody to gliadin peptide (the problematic fragment of gluten) deamidated by tissue-transglutaminase. It's very specific for celiac. Normal intestines don't even make DGP, so non-celiac people don't have antibodies to it.

Is this test more sensitive than other blood tests or the biopsy? I have been on a low gluten diet for over a year and went gluten-free a couple of weeks ago. I feel much better without gluten and I would like to get a firm diagnosis, mainly for my kids' sake (so they get tested). My GI told me on Friday to start eating gluten and schedule an endoscopy in 2 weeks. I am not sure if 2 weeks of gluten eating is enough to show up in the biopsy and I am not sure I can do 2 weeks of this anyhow. I am on day 3 and feel miserable. Tired, lethargic, anxious and in total brain fog. It feels like there is a big rock wedged in my stomach. Since I have to eat 3-4 slices of bread a day, I force that down, but I can't eat anything else. If it is that bad after 3 days, what will it like after 2 weeks?

I have to return to work on Tuesday. I teach at a university and the way I feel now I could not even stand for an hour, much less deliver a lecture or answer questions. I think I will have to call my GI and cancel the endoscopy.

BTW I am new to this forum. I started reading it a few weeks ago and found it very supportive and helpful. Thanks for everyone!

[cassP]

Anti-Deamidated Gliadin Peptide IgA. It tests for the presence of antibody to gliadin peptide (the problematic fragment of gluten) deamidated by tissue-transglutaminase. It's very specific for celiac. Normal intestines don't even make DGP, so non-celiac people don't have antibodies to it.

is that different than the regular Antigliadin Iga test??? is it just a newer better evolved version of it?

[Skylark]

is that different than the regular Antigliadin Iga test??? is it just a newer better evolved version of it?

I don't know how to explain the test differently. Yes, it's a newer test, it is not the same as regular anti-gliadin IgA, and it is far more specific for celiac.

My understanding it that it is more specific, but not necessarily more sensitive. All the blood tests have the problem of essentially looking in the wrong place. The antibodies we really care about are in the intestinal mucosa and they don't travel to the blood in all people. Blood is easy to collect and easy to test, so that's why blood tests are developed.

[ravenwoodglass]

All the blood tests have the problem of essentially looking in the wrong place. The antibodies we really care about are in the intestinal mucosa and they don't travel to the blood in all people. Blood is easy to collect and easy to test, so that's why blood tests are developed.

I think the antibodies can and do travel to areas other than just the gut. We see that with DH when the antibodies are found in the skin. The antibodies can also travel to and attack the brain, thyroid and other organs. We have a lot to learn about celiac. I think it is possible that there are different antibody types or that the tests are just not sensitive enough to pick up the antibodies in some people. I don't know. I wish I did so that so many of us wouldn't 'fall through the cracks' like I did for so many years because their blood tests are a false negative.

[cassP]

thanks skylark, i understand.

and ravenwood- i think what skylark was saying- what i understand is that the same antibody levels in the mucosal lining may not rise to a noticeable amount in everyone's blood.... makes sense now- otherwise we would ALL have DH.. and we would ALL have noticeable positive amounts in the blood. but of course it does wreak havoc throughout our body- even in the brain as you said.

such a tricky thing testing can be. i think GIs should get on this forum just to learn a little more about this disease

[T.H.]

Freaking Amen to that!!

thanks skylark, i understand.

and ravenwood- i think what skylark was saying- what i understand is that the same antibody levels in the mucosal lining may not rise to a noticeable amount in everyone's blood.... makes sense now- otherwise we would ALL have DH.. and we would ALL have noticeable positive amounts in the blood. but of course it does wreak havoc throughout our body- even in the brain as you said.

such a tricky thing testing can be. i think GIs should get on this forum just to learn a little more about this disease

[Kay DH]

Is this test more sensitive than other blood tests or the biopsy? I have been on a low gluten diet for over a year and went gluten-free a couple of weeks ago. I feel much better without gluten and I would like to get a firm diagnosis, mainly for my kids' sake (so they get tested). My GI told me on Friday to start eating gluten and schedule an endoscopy in 2 weeks. I am not sure if 2 weeks of gluten eating is enough to show up in the biopsy and I am not sure I can do 2 weeks of this anyhow. I am on day 3 and feel miserable. Tired, lethargic, anxious and in total brain fog. It feels like there is a big rock wedged in my stomach. Since I have to eat 3-4 slices of bread a day, I force that down, but I can't eat anything else. If it is that bad after 3 days, what will it like after 2 weeks?

I have to return to work on Tuesday. I teach at a university and the way I feel now I could not even stand for an hour, much less deliver a lecture or answer questions. I think I will have to call my GI and cancel the endoscopy.

BTW I am new to this forum. I started reading it a few weeks ago and found it very supportive and helpful. Thanks for everyone!

My GI only had me on the gluten challenge for 1 week before the colonoscopy/endoscopy. He was quite sure I did not have Celiac but instead had diverticulosis and said I only needed to be on the challenge for a week for a positive celiac test. He indicated I was too healthy for Celiac. Needless to say, he was wrong. My multiple colonoscopy biopsies were all negative and he only took one celiac biopsy, which was also negative. I was quite sick for the week, including my rashes coming back after 8 months gluten-free. I'm a research scientist and the brain fog, D, and other symptoms are rough. I had the IgA-only blood test after going gluten-free, and it was negative (my GP is learning more about gluten intolerance). Make sure your GI takes lots of pictures and biopsies and you get copies of everything. Two weeks is a bit short for a challenge and GI damage tends to be less pronounced and very spotty. If it comes back negative for Celiac, you may still be gluten intolerance or gluten sensitive. Even though my tests have all been negative, I'm gluten-free for life.

[ravenwoodglass]

and ravenwood- i think what skylark was saying- what i understand is that the same antibody levels in the mucosal lining may not rise to a noticeable amount in everyone's blood.... makes sense now- otherwise we would ALL have DH.. and we would ALL have noticeable positive amounts in the blood. but of course it does wreak havoc throughout our body- even in the brain as you said.

What I was trying to say is there may be more than one type of antibody other than the anti-gliadan that is now looked for and that at times they may be concentrated in organs other than the gut. This is seen in folks like myself that are seronegative celiacs with significant brain impact. I wonder if that may be the case with others who have more impact in other organs before or instead of the typical GI impact.

Open Original Shared Link

The importance of newly discovered inflammatory bowel disease-associated antibodies (including anti-glycan antibodies and anti-OMP) in celiac disease is not sure.

Open Original Shared Link

"We believe that undiagnosed celiac disease can cause other disorders by switching on some as yet unknown immunological mechanism. Untreated celiac patients produce organ-specific autoantibodies."

The link from this next excerpt was blocked but you could find the whole article by searching the title:

Celiac Disease and Gluten Linked to Brain Disease by Deposits in Intestine and Brain by Dr Lewey

"In light of a new report that blood test negative celiac disease can have intestinal tTG and advanced intestinal damage it is curious to wonder if the gluten ataxia patients with blood tests negative are seronegative celiacs. It is increasingly appearing that there is a very broad spectrum of gluten related disease and there are non-celiac gluten related symptoms that include the brain, skin, musculoskeletal system as well as the gut."

[cassP]

very interesting, thanks for all the links.

i believe it all... and i definitely believe in the widespread damage from gluten!

and we're all different- right? gluten is going to express itself in different areas for all of us-> i dont doubt that at all.

[GlutenFreeManna]

I don't know if your really going to want to hear this but since you asked....

My response to the gluten challenge was horrific. I had to do 2 at diagnosis. The first my symptoms returned full force after 3 days back on gluten and my doctor told me to stop the challenge and get back on the diet. I was then referred to my GI doctor who demanded another challenge. I was terrified because of my first response so he told me to just do one for 3 days right before the biopsy. Long story short I was laying on the floor bleeding when I was supposed to be at the biopsy. I got my diagnosis finally.

Not all respond as violently as I did and some are able to stick it out the full 2 to 3 months needed for a challenge. How you will react to one I can't say but only you can decide if it is worth continueing if and when you react. Do keep your doctor in the loop and call him as soon as you react and detail the results. Some doctors will stop the challenge if it makes us extremely ill.

Raven thanks for sharing your story as you always do. I'm fairly certain this is what would happen to me if I challenged for testing purposes. I went through a denial stage very early in my gluten free eating where I decided to challenge by getting a regular pizza. The result was two days of pooping liquid blood as well as all my neuro symptoms coming back. I had never had bad gastro symptoms like that before going gluten free so I was really scared, but I have no doubt it was the gluten. I still get a little blood now if I have a bad accidental glutening. Nothing on earth would convince me to do a challenge for testing. But for those that do not have as violent reactions, I can understand why it would be worth it to have a doctor diagnosis.