Have You Done A Gluten Challenge?

[ebrbetty]

I went to my new gastro yesterday, still having terrible stomach pain 6 months gluten-free, so, she did the blood test again, said, if it comes back negative she wants me to try a gluten challenge, also sending me in for a colonoscopy and the test with the tube/camera down the throat into my belly. blood was found in the stool and I'm having incredible heartburn.

anyway, I'm scared to start eating it again, but after 6 months I should not be in severe pain everyday

if you did a challenge, how long did you do it? how do you do it and still deal with work etc?

thanks, Betty

[kbtoyssni]

If you've been gluten-free for six months then your blood work and intestinal biopsy should come back negative (unless you're accidently getting gluten from somewhere). I'm assuming you had a positive blood test six months ago, so a negative result this time would mean the gluten-free diet is working for you. I don't know if you had a biospy done six months ago, but doing it again would only show how much your body has healed. Negative results in this case would be a good thing. Is there a reason why your doc is doubting the celiac diagnosis?

Are you feeling better at all? Recovery can take a long time - some people here have taken up to two years - especially if you've been glutening yourself a lot, which is pretty common when you first start out.

I'd look into other food allergies before doing a gluten challenge. Dairy/casesin is a big one, soy is another, maybe even corn.

Back to your original question about the challenge - I've never done one, but I've accidently glutened myself enough times to know that gluten makes me horribly sick.

[CarlaB]

I got so sick there is no way I could have worked. I'm a stay-at-home mom and my husband and kids had to pick up the slack around here so I could lay around. I also felt drunk most of the time from all the brain fog. I did a six-week challenge, then the biopsy still came out normal.

I think it was good advice to look for what else may be causing the problem. It was casein for me.

[ebrbetty]

If you've been gluten-free for six months then your blood work and intestinal biopsy should come back negative (unless you're accidently getting gluten from somewhere). I'm assuming you had a positive blood test six months ago, so a negative result this time would mean the gluten-free diet is working for you. I don't know if you had a biospy done six months ago, but doing it again would only show how much your body has healed. Negative results in this case would be a good thing. Is there a reason why your doc is doubting the celiac diagnosis?

Are you feeling better at all? Recovery can take a long time - some people here have taken up to two years - especially if you've been glutening yourself a lot, which is pretty common when you first start out.

I'd look into other food allergies before doing a gluten challenge. Dairy/casesin is a big one, soy is another, maybe even corn.

Back to your original question about the challenge - I've never done one, but I've accidently glutened myself enough times to know that gluten makes me horribly sick.

my first blood test was borderline positive, i had been 98% gluten free at the time..the reason she wants to re-do the blood test is to see if i may be getting glutened and no knowing it..I dought it, I'm very careful and because she said my primary care dr did not do all the blood tests for celiac, there are a couple i never had done. she also said ppl can get a positive celiac blood test but it may not be gluten, that a positive can be another disease.

the colonoscopy is because of the severe pain, blood in stool and to check for cancer.

these are the tests I had done:[98% gluten free at the time]

TTG AB my result 14..test range 0-19

Antigliadin AB {IGA} my result 19 test range 0-19

Antigliadin AB {IGG} my result 26 test range 0-19

my dr said thats is a positive result for celiac

any help from you guys whould be appreciated, would love to hear your thoughts on my blood test results. I can't stop doughting this!

ps..i'm dairy free too

[Ursa Major]

I agree that your test results are positive for celiac disease. I agree with everything your doctor wants to do, except for the gluten challenge. I think that is a terrible idea. You likely have other problems on top of the celiac disease. Try cutting out corn and soy to see if it makes a difference.

[ebrbetty]

I agree that your test results are positive for celiac disease. I agree with everything your doctor wants to do, except for the gluten challenge. I think that is a terrible idea. You likely have other problems on top of the celiac disease. Try cutting out corn and soy to see if it makes a difference.

thank you, i know i also have an ulcer, but all meds seem to make it worse.

i appreciate your opinion on my blood tests, i have been doubting it everyday for 6 months..i just can't stand anymore of this stomach pain, hurts 24/7 no mater what i eat or don't eat. problem

[Melzo]

she also said ppl can get a positive celiac blood test but it may not be gluten, that a positive can be another disease.

Did she happen to mention what other disease it could be? I would be VERY interested in what other diseases come up positive the same as celiac disease would. As for my own personal experience - I have not done the gluten challenge, although I will be going to another gastro after the baby is born and I suspect that they will want me to try that as well. Although on this site and many others, a gluten challenge is standard / typical of diagnosing celiac disease. Some doctors just stop in the middle of the process (after blood work and biopsy). The amount of time they put you on this test varies.

If you have been gluten-free for six months -do you feel better, worse, or the same than when you were first diagnosed? Some people do take longer to heal (took me about a week to feel 100% better), but I would think that you would feel somewhat better unless there is something else involved here (i.e. other allergy, disease, medical issue).

I wish you luck should you decide to do the gluten challenge. Would taking off work while doing this test be an option? If your work has fifty or more employees, you may be eligible for disability since the U.S. (pending you live in the U.S.) treats celiac disease as a "handicap/disability." I believe your doctor would just have to state that it was a medical necessity and that you are unable to work under these circumstances. Speak with your HR person to see what your options are.

Let us know what happens - And more importantly, I hope that you feel better soon!

[ebrbetty]

Did she happen to mention what other disease it could be? I would be VERY interested in what other diseases come up positive the same as celiac disease would. As for my own personal experience - I have not done the gluten challenge, although I will be going to another gastro after the baby is born and I suspect that they will want me to try that as well. Although on this site and many others, a gluten challenge is standard / typical of diagnosing celiac disease. Some doctors just stop in the middle of the process (after blood work and biopsy). The amount of time they put you on this test varies.

If you have been gluten-free for six months -do you feel better, worse, or the same than when you were first diagnosed? Some people do take longer to heal (took me about a week to feel 100% better), but I would think that you would feel somewhat better unless there is something else involved here (i.e. other allergy, disease, medical issue).

I wish you luck should you decide to do the gluten challenge. Would taking off work while doing this test be an option? If your work has fifty or more employees, you may be eligible for disability since the U.S. (pending you live in the U.S.) treats celiac disease as a "handicap/disability." I believe your doctor would just have to state that it was a medical necessity and that you are unable to work under these circumstances. Speak with your HR person to see what your options are.

no, she did not say what other diseases come up positive, she said we'll get into that later if need be..its driving me nuts wondering, I tried to find out online..nothing! maybe someone here will know?

thanks for the support, I feel about 5% better..thats it, my ulcer has gotten much worse and the blood in my stool is a concern

she does a 3-4 week challenge

[JodiC]

I recently did a 3 month gluten challenge due to some of the same symptoms as you. (after being off gluten for 1year). The challenge made me hyper-senstive and created erosions in my stomach for which I now take Prevacid (until they heal). I wouldn't recommend the challenge at all. Unless your DR. can give you some concrete results. Don't forget there are alot of other auto-immune disease that can present itself along with celiac. Fatty liver, Fibromyalgia, Endometriosis, Osteoporosis, and Sjogrens are the additional ones I am dealing with. Since the challenge these have been hightened. We are also going to be retesting for Lupus next year. You need to find a dr. that is very experienced with this disease, do your own research, and get copies of all your test results and charts. Eliminating gluten is key and a challenge will prove nothing. I don't see them telling a person with lung cancer to go and smoke some more ciggs........ just to be sure. It's your body not theirs.

[ebrbetty]

I recently did a 3 month gluten challenge due to some of the same symptoms as you. (after being off gluten for 1year). The challenge made me hyper-senstive and created erosions in my stomach for which I now take Prevacid (until they heal). I wouldn't recommend the challenge at all. Unless your DR. can give you some concrete results. Don't forget there are alot of other auto-immune disease that can present itself along with celiac. Fatty liver, Fibromyalgia, Endometriosis, Osteoporosis, and Sjogrens are the additional ones I am dealing with. Since the challenge these have been hightened. We are also going to be retesting for Lupus next year. You need to find a dr. that is very experienced with this disease, do your own research, and get copies of all your test results and charts. Eliminating gluten is key and a challenge will prove nothing. I don't see them telling a person with lung cancer to go and smoke some more ciggs........ just to be sure. It's your body not theirs.

I'm not happy about doing a callenge, and really don't think I will, my blood tests should be negitive because I've been Gluten free for 6 months.

I also have fibro, discord lupus, hypothyroid, slow gastic empting, dysepsia [sp] and terrible heartburn.

she will look for colon and stomach cancer in a couple weeks..i just wish i could find a way to stop the pain.

thanks for your reply!

[wozzy]

My celiac disease has been a bit of a guessing game.

My dad has it. My sister has it. I went gluten-free for a few months last year during school (and almost starved because there was not much I could eat in the dorms).

I went to a doctor in the spring after school got out. My gluten test was negative, but I don't think I was eating enough gluten at the time. I went on a challenge diet after I went to an allergist where I ate gluten but no lactose. After a few days, I started feeling pretty sick so I stopped.

From my allergist blood test, my IgE was really high...but I don't think that has anything to do with gluten?

Anyway, I don't care what the blood tests say because I feel better without it. If I have a little bit now, by accident, I can really tell, and that's a good enough diagnosis for me.

[tiffjake]

I tried a challenge. Made it three days. Was rolling on the floor in the bathroom in pain. Won't go back for anything now! You can't make me!

[Green12]

I am not for a gluten challenge personally either. I had similar results, like JodiC, things got worse for me after reintroducing wheat. I became hyper-sensitive to everything and all of my physical/emotional symptoms were magnified.

But ultimately, everyone has to decide what is best for themselves.

Whatever you do decide, best of luck to you.

[sparkles]

Just read your post and wanted to say something about the colonoscopy. Before I was diagnosed with celiac disease, I had lots of gastro symptoms.... One of them was blood in the stools. Doctor went ahead and scheduled colonoscopy and did a stool sample test. I was lucky. Someone canceled an appointment and I got the colonoscopy done immediately (before stool sample test came back) and the doc discovered cancer. By the way, the stool sample came back negative. My doc said that I was really lucky because based on the stool sample, he would have suggested that I not have the colonoscopy done. The cancer happened to be the kind that really grows quickly and if it had not been found when it had been, my chances of survival would have been a whole lot lower. As it is, I am cancer free. I believe that the cancer was part of the celiac disease. I wasn't diagnosed with celiac disease until 4 years ago and since being gluten-free, my colon hasn't even produced benign polyps. It certainly is not the most fun test to have but it can save your life especially IF you have celiac disease and it is not controlled. Because of being overweight, celiac disease was not even considered in diagnosing gastric problems. Finally I was hospitalized for 10 days because I was so sick and a doc did a biopsy....after the test, he really didn't need a biopsy to confirm the disease because the villa were so flattened. I think I have had celiac disease for many years and it went undiagnosed. It has taken a long time for things to heal but after about 2 months of NO gluten, I knew that I had been given my life back. If a doc ever suggested that I go back on gluten just to see what would happen, I would find another doc. The proof is in the diet.... I do not miss the explosive diahreha, the stomach pains, the vomiting, nausea, migraines, depression, ETC. It is bad enough when I accidentally get glutened....no way would I do it on purpose!!!!!! ANYWAY, GET THE COLONOSCOPY DONE, IT COULD SAVE YOUR LIFE..... IF FACT, I THINK WHEN SOMEONE HAS A DIAGNOSIS OF celiac disease, they should get a colonoscopy done because colon cancer (IF CAUGHT EARLY) has a really high survival rate.

[ebrbetty]

thank you all for your imput, I'm still thinking I won't do it, even though I'm having stomach pain everyday.

I'm trying to follow the IBS diet too, as this is the 4th Dr that has told me in 5 years I have one of the worse cases of IBS they have ever seen..along with the ulcer and slow gastic empting.

I'm calling the dr tomorrow for blood test results and to change the date of my colonoscopy, wouldn't you know it my period is due 2 days before eeerrr makes me mad to put it off longer, but I have no choice

[JodiC]

You could try Prevacid for the stomach (slow emptying and heartburn) and Amitriptyline 10mg for the chronic pain. My dr. put me on these and I can sleep at night, the fibro pain has diminished, and I can eat again without feeling the need to throw it all up by the end of the day because breakfast hadn't even digested yet. (Sorry if that's gross). Also try some Pancreatic enzymes. They are prescription and would need to be given by your doc. I use these off and on to control my celiac caused symptoms. Hope this helps.

[ebrbetty]

You could try Prevacid for the stomach (slow emptying and heartburn) and 10mg for the chronic pain. My dr. put me on these and I can sleep at night, the fibro pain has diminished, and I can eat again without feeling the need to throw it all up by the end of the day because breakfast hadn't even digested yet. (Sorry if that's gross). Also try some Pancreatic enzymes. They are prescription and would need to be given by your doc. I use these off and on to control my celiac caused symptoms. Hope this helps.

thanks jodi, I tried prevacid, it made the heartburn worse, all the RX meds for hearburn make it worse somedays there is no reason for the stomach pain, yesterday I was having a "good" day, pain level at a 5..then out of the blue [hadn't eaten a thing] within 10 mins I was on the floor feeling like I needed to call 911 the stomach pain was so bad..lasted 5 hours then died down..I just don't get it!

[JodiC]

If Prevacid made it worse you do not have an acid problem. I would definately call my dr and get some labs run. Hope you're feeling better. Good luck!

[ebrbetty]

oh its heartburn thats for sure, my new gastro explained that some ppl feel worse taking the PPI's and heartburn/ulcer meds and I've been on them all with terrible results.

the heartburn is so bad somedays even my tounge and gums burn