Has Anyone Done The Gluten Challenge?

[cgilsing]

Well, I did it....I went to a new GI in the hopes of finally getting an acceptable diagnosis and consistant health care. I had a really good experience! I have had trouble with this from the beginning. After years of being told my problems were due to stress or IBS my mom mentioned celiac disease as a possible cause for my problems (there are several family members with celiac disease). I asked my doctor what she thought and she told me that the way they diagnose celiac disease is to try the gluten-free diet and see if it helps. I did as I was told and felt 100% better right away. I gained 20lbs, my stomach problems got much much better, my hair started growing back, the list goes on and on. Six months later I found out that I should have had a biopsy to get an appropriate diagnosis. I asked for a referal to a GI and had a terrible experience. He refused to speak to me until I had a biopsy and then after the results came back inconclusive he sent me a letter and basically told me not to come back. That was a year and a half ago. This time I asked to go to the GI that my family goes to. He was soooo much better! I told him the situation and he listened! He is sending me for the blood test (since he called for my records from the old GI and found out that they never did blood work on me) and he said that if the bloodwork is inconlusive that he will want me to do a gluten challenge. I would have to eat gluten for a week to 10 days. I am so scared of this! I haven't eaten gluten knowingly in 2 years, but I know I have a severe even from CC. I have become more sensitive to gluten since I went gluten-free. Has anyone had to do this?! What was it like? Even my husband is scared for me to do this! I'm hoping it doesn't come to that, but if it does I want to know what I'm in for....

P.S. Sorry this is so long!

[key]

This has been my experience too. I went gluten free two months before having the blood tests done and felt great. Blood tests came back borderline for celiac and my 2 year old son has it. My GI wanted me to start eating wheat for the biopsy, but I tried and got too sick to follow through with it. For now I won't do it. I have three little kids and can't afford to lie around in bed. If you have done this two years already, then you may as well just stay on the diet. You know it makes you sick if you get CC. The biopsy still might be negative and you will have made yourself regress for nothing. Of course it is up to you, but I think if you feel great gluten-free then stay that way. THere are alot of people here without a formal diagnoses.

Monica

[aikiducky]

I'm afraid what I'm going to say isn't going to be very encouraging...

Just one thing to point out (ok, two): After two years gluten free, what you would EXPECT to see is "inconclusive" blood test results. That's the whole point of the diet, that you don't have the constant ongoing reaction anymore, and hence also no antibodies to detect. At most it will be interesting to see your blood test results to see how well you have managed to stay gluten free, at this point. At this point, a negative blood test is what you're supposed to have.

A gluten challenge of only ten days will probably only show that you do indeed get sick when you eat gluten. I think you have a good chance of an inconclusive biopsy with that short a time. I know over here a usual time to be on gluten for a gluten challenge is three months, with the exception of symptoms getting so bad that the patient can't stand it.

Sorry to be so depressing, but honestly I don't know what you are expecting to find out at this point. Remember, celiac is only reliably diagnosable when there is considerable damage to the intestine. Are you going to purposefully damage your body to the point that you get a 100% positive diagnosis?

Pauliina

[cgilsing]

Are there different kinds of blood tests that can be done? He wants me to do a 5-marker serology panel and genetics. It lists tTgIgA, EMGIgA, Total Serum IgA, AGA IgA, and AGA IgG. I asked him today if already being on the gluten free diet would skew the results and he said no.....man now I'm even more confused. I just want to be under the care of a GI, I really don't care that much about a diagnosis, but no one will take me as a patient until I am diagnosed to their satisfaction.....ugh....I am so irritated with that first Dr. for not knowing what she was talking about!

[shellbean]

I may not be much help but here goes anyway...LOL! I was not diagnosed as celiac by a doctor. They couldn't figure out what was wrong with me because all my tests came back negative. I decided to self diagnose myself by going on the diet and have been on the gluten free diet for about a week. I cheated once by eating a piece of bread with wheat in it just to see my reaction and I was in so much pain from doing that. The diet has helped me tremendously and I am so glad I started it. I wanted so bad to get an official diagnosis but I just couldn't stand anymore of their tests. It was making me sicker. I don't think I would try the gluten challenge just because I saw how that one piece of bread triggered everything. I know everyone is different but for me, I decided I don't need someone to prove to me what my problem is anymore. I just go with what I know helps me. I would be scared to try the challenge myself. But follow your heart. You are the only one who knows your limits. Best of health to you and good luck!

[Bonnie]

After only being gluten free for 6 weeks, I had the blood tests and they came back negative.

6 Months gluten free I did a gluten challenge. I ate 2 slices of ordinary bread. I have never had such pain in my entire life. For 48 hours I saw black dots in front of my eyes and passed out from the severity of the pains. My whole body ached, the brain fog was so bad I couldn't drive. It took 10 days for me to feel well again.

My GI told me to go back on gluten for 3 weeks for a biopsy a couple of months ago although he told me I already had my diagnosis from my own gluten challenge. I decided not to go ahead with it. I could not willingly put myself through it again.

I'm afraid I have to agree with Paulina - you are going to make yourself sick and the tests will more than likely be negative.

You already have your diagnosis.

Best of luck with whatever you decide!

Yvonne

[nettiebeads]

You are right to be concerned about ingesting gluten again. What you have done is the diet challenge and it has come back positive for gluten. I was dx'd that way 9 yrs ago. No tests, not even bloodwork. My gp announced celiac and said the gluten-free diet was for life. He's since retired, but none of my other drs have questioned the dx. I tell them the symptoms of ingesting gluten and they don't argue with me. (except for one internisnt I used to go to.) Even my GI dr believes me and treats me accordingly. So it's up to you. You know your body best, and if gluten is the equivelent of poison for it, then stay away!

Hope this helps some

Annette

[jenvan]

Hey girl! Read this article on the pros and cons of the gluten challenge--very informative, and not long: https://www.celiac.com/st_prod.html?p_prodid=1281 This will tell you what you need to know...

[Guest nini]

my personal opinion is that Positive Dietary Response is THE most valid diagnostic tool, and therefore you have your answer. YOU DO NOT NEED TO PUT YOURSELF THROUGH ANY MORE TESTING.

The Celiac expert that spoke at our recent support group meeting said that when someone comes into her practice and says that they have tried the gluten-free diet and it's working for them she NEVER puts them back on gluten for the sake of testing.

My daughter was dx'ed based on positive dietary response alone...

I would say to cancel any more appointments with these GI "specialists" and stick with the Dr. that told you to try the diet... go back to that Dr. and tell them that YES!!! overwhelmingly the diet has worked for you and you do not ever want to go back on gluten just for the sake of any ridiculous testing.

Listen to your body, don't listen to Dr.s that are sticking to OUTDATED and dangerous methodology of waiting to dx, until they can confirm DAMAGE. That is just stupid. You know your body reacts to gluten and responds extemely well to the diet. That is ALL you need to know.

[bluejeangirl]

I'm in the same boat as you are. I've been gluten free for 4 mo.s and its so nice not to have the pain I used to have. My symptoms were muscle and joint pain so bad in the mornings it was hard to get out of bed. I'd have night sweats and dreams where people or animals were chasing me to kill me. I'd have depression that was awful and constipation. So I was afraid to go the GI with those symptoms because I never thought they were typical of celiac. Under the advice of a nutritionist/health food store owner friend I went Gluten free and felt so good I never turned back. I don't know what to do either since I don't want to touch the stuff. I tried oatmeal once and didn't feel good but not as bad as what wheat would do. My question is I can't go the the local support group for celiacs which is held in a meeting room in a hospital without a diagnoses right? I'm afraid of the officially diagnosed looking down on the self diagnosed. Any comments

[nettiebeads]

It's a SUPPORT group. If they look down on you, then they have a problem. You self-dx because of necessity, not for attention or because you needed to belong to a group of some sort. Go, if they ask you questsion just smile and say you found out you had celiac. End of story.

[plantime]

my personal opinion is that Positive Dietary Response is THE most valid diagnostic tool, and therefore you have your answer. YOU DO NOT NEED TO PUT YOURSELF THROUGH ANY MORE TESTING.

The Celiac expert that spoke at our recent support group meeting said that when someone comes into her practice and says that they have tried the gluten-free diet and it's working for them she NEVER puts them back on gluten for the sake of testing.

My daughter was dx'ed based on positive dietary response alone...

I would say to cancel any more appointments with these GI "specialists" and stick with the Dr. that told you to try the diet... go back to that Dr. and tell them that YES!!! overwhelmingly the diet has worked for you and you do not ever want to go back on gluten just for the sake of any ridiculous testing.

Listen to your body, don't listen to Dr.s that are sticking to OUTDATED and dangerous methodology of waiting to dx, until they can confirm DAMAGE. That is just stupid. You know your body reacts to gluten and responds extemely well to the diet. That is ALL you need to know.

I have to agree with this post. "First do no harm" is supposed to be the doctor's motto, but when it comes to celiac, very few follow it. You have a positive on the dietary test, which is a valid scientific test. If you want to challenge, eat one or two slices of bread on a day when you have a week to give up to being sick. If you are sick, you will know for sure. Why torture yourself for any longer? The blood tests you listed should all come back negative, even if you do eat gluten for a week or so.

[RoseNNJ]

I have been gluten-free for about a month. I saw the GI last Thursday and he sent me the next day for the panel. I started eating gluten 6 days ago for my Biopsy this Friday. So what I am reading my tests may come back negative. Grrrrrr

[aikiducky]

Hi Rose!

the most important question is: How did you feel while you were gluten free?

Pauliina

[RoseNNJ]

Hi Rose!

the most important question is: How did you feel while you were gluten free?

Pauliina

MUCH BETTER!!! Since eating the "G" word I am in so much pain

[aikiducky]

MUCH BETTER!!! Since eating the "G" word I am in so much pain

Well, there you go. Have you told the doctor that?

Pauliina

[Rachel--24]

Are there different kinds of blood tests that can be done? He wants me to do a 5-marker serology panel and genetics. It lists tTgIgA, EMGIgA, Total Serum IgA, AGA IgA, and AGA IgG. I asked him today if already being on the gluten free diet would skew the results and he said no.....man now I'm even more confused. I just want to be under the care of a GI, I really don't care that much about a diagnosis, but no one will take me as a patient until I am diagnosed to their satisfaction.....ugh....I am so irritated with that first Dr. for not knowing what she was talking about!

You're doctor is ordering all the right bloodtests...unfortunately for you its 2 years too late. Did you tell him you'd been off gluten 2 years? If he's saying this wont afect the tests...he's not very informed at all. I think its pretty pointless for you, at this point, to back on gluten. No test is going to come back positive with a short gluten challenge. The only "true" test will be what your own body tells you....but it sounds like you already have that answer.

[par18]

I'm in the same boat as you are. I've been gluten free for 4 mo.s and its so nice not to have the pain I used to have. My symptoms were muscle and joint pain so bad in the mornings it was hard to get out of bed. I'd have night sweats and dreams where people or animals were chasing me to kill me. I'd have depression that was awful and constipation. So I was afraid to go the GI with those symptoms because I never thought they were typical of celiac. Under the advice of a nutritionist/health food store owner friend I went Gluten free and felt so good I never turned back. I don't know what to do either since I don't want to touch the stuff. I tried oatmeal once and didn't feel good but not as bad as what wheat would do. My question is I can't go the the local support group for celiacs which is held in a meeting room in a hospital without a diagnoses right? I'm afraid of the officially diagnosed looking down on the self diagnosed. Any comments

That should not be a problem. In the support group I'm in there are 140 members. One of these people is a former co-worker of mine. He was suggested by his family doctor 30 yrs ago to eliminate gluten from his diet. It worked and he has never looked back. It just so happened after he retired that I got symptoms and had a positive biopsy. I had not seen him in about 10 years until I ran into him at the support group meeting last year. Of course we were both surprised that out of a group of 20 we both ended up with this disease. I never realized when we worked together that he had diet issues. I'm still impressed with his family doctor's suggestion back in the early 1970's. He is one of the most informative persons in the group as he has the most experience. It is hard to imagine how one would have coped with this disease before the internet. Good luck and stay on the diet.

Tom

[Guest nini]

in the support group I am in, it does not matter if you are self diagnosed or diagnosed by a dr.

Yes, most of us were dx'ed by a dr., but we are not going to look down on someone who figured it out on their own. The whole point is to be a "support" system.

[cgilsing]

Wow! THank you guys so much for your responses! I went to bed last night and there were only a few and got up this morning and there were 2 pages! I'm going to go ahead and do the blood test just because....it probably won't come up with anything, but what does it hurt to try. I'm going to talk to my doctor about what exactly he wants to find with a gluten challenge. If he just wants to see me with symptoms than I can handle that, but if he is wanting me to do enough damage to get a positive biopsy I'm just not up for it. It's not worth it, to put myself in that condition. It's just so frustrating sometimes! Thanks again everybody!

[Linda352]

This morning I did decide to challenge myself by eating some Shredded Wheat. The box has been sitting in my cupborard half eaten since I went gluten-free 2 mos ago. I hate to throw food out if I don't have to so I figured I would see what would happen I've been paying for it all day with my arthritus symptoms. The rest of the box is now in the garbage

Linda/NJ

[bluejeangirl]

Wow! THank you guys so much for your responses! I went to bed last night and there were only a few and got up this morning and there were 2 pages! I'm going to go ahead and do the blood test just because....it probably won't come up with anything, but what does it hurt to try. I'm going to talk to my doctor about what exactly he wants to find with a gluten challenge. If he just wants to see me with symptoms than I can handle that, but if he is wanting me to do enough damage to get a positive biopsy I'm just not up for it. It's not worth it, to put myself in that condition. It's just so frustrating sometimes! Thanks again everybody!

I would like to also thank you for your responses to my question of support groups and how people view self diagnoses. All I have to say is I don't care what a doctor or test reveal, gluen bothers me and I'm very happy to give it up and will avoid it anyway.

[Susan123]

I did a gluten challege with the Celiac Research Center in Baltimore for a year. He said you really need to do it for that long to get an accurate result. I ended up being diagnosed Gluten Sensitive and not Celiac. My only symptoms the whole year was a burning in my stomach so it is really a personal decision to make. I personally needed proof in my life because I did not have classic symptoms.

[bigapplekathleen]

Hi -

I did a gluten challenge last spring and failed miserably. I didn't even make it to the biopsy. The strain it put on my body was intense. I passed out twice after eating wheat. I felt extremely tired, moody, and generally ill. I ended up with a severe infection within 3 days and needed a long course of antibiotics.

If anyone ever tells me they are going to to a challenge, I say don't put yourself through the pain.

Have you thought about the genetic marker tests for the Celiac Gene? They are pretty accurate, and you can be on the gluten-free diet when they are done.

good luck -

k

[CMCM]

I just could NOT do a challenge because I know how sick I would be. And for what purpose? If you are one of those people (like me) who wanted something definitive to grab onto, take things into your own hands and do the Enterolab tests. You don't have to be eating gluten to do them, they pick up antibodies in the stool that are NOT in the blood, and you'll have a much better answer. Plus, Enterolab does a gene test and one for casein, which is also a problem for a lot of people. AND....you'll spend far less $$ on this set of tests ($369) than you will be spending going the clueless doctor/endless test route.