Anyone Else Told To Eat Gluten Again For A Biopsy?

[Birdie-Is-Tiny]

About 10 months ago I was told I had celiac disease on the basis of blood work. Last month I went to a specialist because of some elevated liver enzymes who told me that celiac could not be confirmed until I had a small intestine biopsy. He said a lot of my symptoms fit with celiac but that some were a little strange, I have had the hiccups for over a year. He told me to eat gluten for two weeks and then come in for the biopsy. He said it was not absolutely necessary but is the only way to be 100 percent sure I have celiac. I'm not too stoked on it, I was wondering has anyone else had this experience? It is of course my decision if I want to go through this process, just wondering if anyone else has been through something similar and has any tips.

Thank you!

[ravenwoodglass]

About 10 months ago I was told I had celiac disease on the basis of blood work. Last month I went to a specialist because of some elevated liver enzymes who told me that celiac could not be confirmed until I had a small intestine biopsy. He said a lot of my symptoms fit with celiac but that some were a little strange, I have had the hiccups for over a year. He told me to eat gluten for two weeks and then come in for the biopsy. He said it was not absolutely necessary but is the only way to be 100 percent sure I have celiac. I'm not too stoked on it, I was wondering has anyone else had this experience? It is of course my decision if I want to go through this process, just wondering if anyone else has been through something similar and has any tips.

Thank you!

Yes. This is quite common. However if you have been gluten-free for 19 months then 2 weeks on gluten is most likely to just make you very sick but not be long enough to redamage you enough to be 'gold standard' diagnosed. Most experts say it takes at least 6 weeks if not up to 3 months for enough damage to be done. It is likely after only a 2 week challenge you will have a false negative.

Here are a couple links for info

https://www.celiac.com/articles/979/1/Chall...-EdD/Page1.html

Open Original Shared Link

[ang1e0251]

My friend's daughter was dx'd through blood and biopsy but didn't like her gastro. They went to another dr and like him a lot but the first doc wouldn't share the pathology. (I know they should have insisted.) He had her do a second endoscopy and she had to gluten challenge for 6 weeks, 1 slice of bread a day. I would not have done it but she chose to with the same result, I might add. She had other symptoms like you that turned out to be other food issues. Well, that's pretty common.

[lizard00]

My doc wanted me to do it, too. We didn't quite see the same way on this issue, but he respected my decision not to. I was finally getting better and seeing real progress... I wasn't going backward. He wanted me to eat it for a month, but he was even skeptical that much could be seen after only one month on gluten after being gluten-free for 6 months. He considers me a celiac patient based on my response to the diet and my genetic risk factor, so I guess I'm clinically diagnosed.

As other posters have said, 2 weeks wouldn't be long enough for a biopsy. You'd just be sick....

[Amyleigh0007]

Right, 2 weeks isn't long enough. My allergist told me I would have to eat gluten for at least 3 months before a biopsy. I said no thanks.

[jerseyangel]

Yeah--2 weeks back on gluten will likely only make you miserable, and not be enough for a valid test result.

A thought on the hiccups--I have frequent hiccups, and the reason, in my case, turned out to be a hiatal hernia. It was found during my last endoscopy.

[Ginsou]

Jerseyangel...so glad you mentioned hiccups. I've had hiccups off and on for the past 3 years. A recent endoscopy showed I had a hiatal hernia.

My gastro doc also wanted me to go back on gluten in order to do another endoscopy....(the gold standard). I refused. An endo one year ago showed no damage to small intestine.....I had been off gluten for almost 2 years, and have issues with grains, including oatmeal, soy, milk, casein,nuts,sesame,chicken, in addition to lactose intolerance.EnteroLab tests were positive,(double genes) blood test for celiac negative. No one told me I was supposed to still be eating gluten when the "official" celiac blood test was done.

I refuse to go back to gluten, or any other of the foods that cause a problem, just so I can have positive test results. I get very sick 24/7, and I see no reason to be a glutton for punishment.

[Sandi*]

About 10 months ago I was told I had celiac disease on the basis of blood work. Last month I went to a specialist because of some elevated liver enzymes who told me that celiac could not be confirmed until I had a small intestine biopsy. He said a lot of my symptoms fit with celiac but that some were a little strange, I have had the hiccups for over a year. He told me to eat gluten for two weeks and then come in for the biopsy. He said it was not absolutely necessary but is the only way to be 100 percent sure I have celiac. I'm not too stoked on it, I was wondering has anyone else had this experience? It is of course my decision if I want to go through this process, just wondering if anyone else has been through something similar and has any tips.

Thank you!

Not yet, but I do want to see a new gastroenterologist and sort of "start anew". So there's a good chance I may need to do it as well.

[jkr]

I had another endoscopy today (I had one a year ago because of iron deficiency anemia) after going back on gluten for two months. My GI said two months was enough. I had been gluten free for only a couple of months prior. I have to go see him next week for the results. It was important to me to have the biopsy. I do have some physicial symptoms from gluten; however, not as bad as some people so I could handle it. I'm glad it's over so I can start back again to gluten free. Even if the biopsy is negative, I'm still not eating gluten. My blood test results were very high and I know from reading this forum that there is a possibility the doctor didn't biopsy an area where the villi is affected. And I did feel better overall when I was gluten free.

[Birdie-Is-Tiny]

Jerseyangel...so glad you mentioned hiccups. I've had hiccups off and on for the past 3 years. A recent endoscopy showed I had a hiatal hernia.

My gastro doc also wanted me to go back on gluten in order to do another endoscopy....(the gold standard). I refused. An endo one year ago showed no damage to small intestine.....I had been off gluten for almost 2 years, and have issues with grains, including oatmeal, soy, milk, casein,nuts,sesame,chicken, in addition to lactose intolerance.EnteroLab tests were positive,(double genes) blood test for celiac negative. No one told me I was supposed to still be eating gluten when the "official" celiac blood test was done.

I refuse to go back to gluten, or any other of the foods that cause a problem, just so I can have positive test results. I get very sick 24/7, and I see no reason to be a glutton for punishment.

Could you two maybe give me some more details on the hernia? Is it likely at all that that could be my problem? I didn't do the gluten trial, but my doctor called me to say that he wanted me to get HLA-typing instead. So I had that blood test, and called for the results. He informed me that the test had come back negative for celiac. I have an appointment with him to discuss that on the 24th, but I was wondering if anyway could give me any insight on this. Is it possible I have a gluten intolerance aside from celiac? Is it possible that I do not have a problem with gluten? I've been researching it but it is very frustrating and confusing. I saw an improvement on the gluten-free diet but the past month or so my symptoms have been slowly returning and I'm wondering if maybe there is a different explanation for my frequent nausea and stuff.

[Amyleigh0007]

Jerseyangel...so glad you mentioned hiccups. I've had hiccups off and on for the past 3 years. A recent endoscopy showed I had a hiatal hernia.

My gastro doc also wanted me to go back on gluten in order to do another endoscopy....(the gold standard). I refused. An endo one year ago showed no damage to small intestine.....I had been off gluten for almost 2 years, and have issues with grains, including oatmeal, soy, milk, casein,nuts,sesame,chicken, in addition to lactose intolerance.EnteroLab tests were positive,(double genes) blood test for celiac negative. No one told me I was supposed to still be eating gluten when the "official" celiac blood test was done.

I refuse to go back to gluten, or any other of the foods that cause a problem, just so I can have positive test results. I get very sick 24/7, and I see no reason to be a glutton for punishment.

Could you get a diagnosis based on your Enterolab results? If you have double genes and a positive response to the diet then I would think you have Celiac! My doctor did. He wouldn't even listen to me last summer when my blood test was negative (I didn't eat gluten prior to my test either). But, when I went back a year later with my gene test results he listened. He did bring up going on gluten to have a biopsy but when I told him how sick I get he wrote in my charts that putting gluten back in my diet would be unacceptable due to my lifestyle and he diagnosed me based on gene tests and positive response to diet.

[Ginsou]

The only details I know about a hiatal hernia is that it is quite common, mostly in older people (that's me). It causes burping, hiccups, heartburn, uncomfortable full feeling. You seems too young to have this problem, but there's always the exception.

It's possible you may be gluten intolerant, with no intestinal damage. It's possible another food is causing your health problems.......such as soy or milk/lactose. Last month I had daily diarrhea and overwhelming nausea 24/7 to the point that I was taking an anti-motion sickness med every day. Suddenly the light bulb went off.....I had started to drink Rice Dream again with my breakfast cereal (contains a small amount of barley not divulged in their ingredient label) and also was using daily amounts of Best Foods Canola mayonnaise. Small amounts of gluten and soy do not have to be listed as an ingredient. The mayo label did not say it contained soy, but in the past the labels have clearly indicated soy was an ingredient. I've switched back to Vance's Dairy Free and Whole Foods/Spectrum mayo and am finally back to normal.

It will take a bit of detective work to figure out exactly what may be bothering you....hopefully you will not be sick for 30 years as I was to discover the culprit.

[Ginsou]

Amyleigh0007.....funny thing, my nurse practioner accepted the Enterolab and food allergy tests (blood, not scratch tests)immediately without question. My endo doc is not so sure.....she still would like to see villi damage for an "official" diagnosis. I have so many food issues, there is no way I would make myself sick on purpose for a more official diagnosis.

[Cynth11]

Hi, Newbie here.

I'm in the exact same situation. I've been gluten free since april 30 with a few contamination issues sprinkled here and there. I had a negative antibody test result, but positive for both genetic markers. I ate 2 slices of bread a few days before the blood test, but i was so sick i swore off doing that again.

I just saw the gastro for the first time last week and she said b/c of the symptoms and the positive genetic markers, it didn't seem necessary to do the endoscopy. I was so happy!

THEN, got a call back a few days later after she got the actual blood test results from my PCP and now the endoscopy is scheduled for Sept 21. They want me to eat wheat for about 3 weeks prior to the test.

I'm trying to psych myself up for this thinking yeah- i can have chinese food one more time or that pizza i used to like, but honestly, 2 slices of Ezekial bread making me so sick... I'm not so sure i can handle this!

Is three weeks going to be enough?

I figured I would start Sept 1 so that I have the rest of August to feel good.

I feel compelled to have this definitively diagnosed so that my daughters won't need to be. (ages 8 and 13 and already gluten free to protect me and their health present and future)

My father died from Non-Hodgkins Lymphoma, never diagnosed as celiac, but now i really wonder.

Do y'all think I should start eating the evil nasty stuff now or save myself until september 1?

(I know it's my choice, just looking to avoid this happening again down the road.)

any response is greatly appreciated.

thanks for having this topic!

Cynth

[SabrinaESQ]

About 10 months ago I was told I had celiac disease on the basis of blood work. Last month I went to a specialist because of some elevated liver enzymes who told me that celiac could not be confirmed until I had a small intestine biopsy. He said a lot of my symptoms fit with celiac but that some were a little strange, I have had the hiccups for over a year. He told me to eat gluten for two weeks and then come in for the biopsy. He said it was not absolutely necessary but is the only way to be 100 percent sure I have celiac. I'm not too stoked on it, I was wondering has anyone else had this experience? It is of course my decision if I want to go through this process, just wondering if anyone else has been through something similar and has any tips.

Thank you!

My doc made me do this a few weeks after my blood tests came back. My understanding is that you HAVE to get this done before the diagnosis of Celiac can be confirmed. But I agree that two weeks doesn't sound like enough to prove anything. But the test is definitely necessary (according to docs).

[RESO]

Cynth11,

I would say don't do it at all but that is your decision. I know you're trying to protect your kids, but if you get tested and are positive, ironically, docs will probably tell you that the whole family should be tested since it's hereditary

I stopped eating gluten last October and didn't start feeling close to normal until mid-July, so when asked about eating gluten again for a test, I said no...um, fruity?....way!!!! Again, though, this is a personal decision. Remember if you do have Celiac, you will be damaging your body by ingesting gluten.

You said the gastro told you that you didn't need the endo, then you got a call that they had scheduled it? If it were me, I would call back and ask her why she changed her mind??? There is a slight possibility that it was scheduled in error, most people in medical offices are overworked and mistakes can happen. If she did change her mind, I would want her to give me some solid reasons why I should put myself through feeling so sick?

Good luck with everything whatever you decide.

Sabrina,

Some docs will take reaction to diet and blood tests into consideration, others will insist on biopsy. But guess what, biopsies can be falsely negative too. I just don't understand why they can't come up with a simple test so people don't have to make themselves sick on purpose.

Best,

R

[Cynth11]

You said the gastro told you that you didn't need the endo, then you got a call that they had scheduled it? If it were me, I would call back and ask her why she changed her mind??? There is a slight possibility that it was scheduled in error, most people in medical offices are overworked and mistakes can happen. If she did change her mind, I would want her to give me some solid reasons why I should put myself through feeling so sick?

Thanks Reso!

They said because I had both genetic markers as positive, I needed to have the endoscopy. I debated back and forth with the medical assistant to make double and triple sure about this. At first I was terrified b/c I knew that I had elevated blood calcium levels (which is sometimes indicative of cancer) and decreased phosphatase (?). Sometimes the internet is wonderful for research and other times it can scare the daylights out of ya!

my hubby is pissed beyond belief b/c he saw how much pain i went through after just 2 slices of bread.

oomph!

I'm googling 'gluten challenge' now just to be sure 3 weeks is enough, or can i get away with 2 weeks of hell. I still have time to decide...

[Sandi*]

Hi, I am currently eating gluten for an endoscopy.

I've had problems for as long as I can remember (pain, bloating, constipation, fatigue, really skinny as a kid - albeit tall, mouth ulcers, etc.). I was actually tested for celiac three years ago. My blood tests were negative due to me producing very low levels of IgA, and my biopsy was negative. However, the doctor did find some "unspecified" inflammation that he didn't mention to me. I only found this out about two weeks ago when I was reading my file (I have a copy because I moved to a different country). I was always told that I definitely don't have celiac and there's no reason for me to eat gluten-free. I did try eating gluten-free in the past, and it did make me feel somewhat better. I never managed to stick to the diet for a very long time, though, my longest time was 4 months. Since I wasn't significantly better I ended up listening to my doctor and quiting. Since then I've been sort of gluten light, avoiding wheat and sometimes gluten. I usually did eat a little wheat once a week. All of this with me feeling somewhat better but not 100% improved.

After I found out about the inflammation that my previous doctor found, I decided to have the gene test. I got the results yesterday, I have the two alleles HLA-DQA1*0501 and HLA-DQB1*0201 that predispose me for a celiac disease. The report said that 95% or celiac patients and 20% of healthy individuals have this gene combination.

I was finally able to get an appointment with a new gastro who got really good reviews on the local celiac web sites. I'm seeing her on the 26th of August. We briefly chatted over the phone about my symptoms and she said that she'd like to do a biopsy on me, and of course, I would have to eat gluten for this for about 6-8 weeks. I thought about it and decided to go for it. It really matters to me to get a proper diagnosis. I mean, I think I already have my answer anyway because of the gene test and dietary response, but now in the back of my mind I'm curious about what that inflammation my doctor found really was. It'd be different had I been strictly off gluten for years, but since I haven't I think I can put up with feeling sick for two more months. I've been sick for years, so what's a couple more weeks.

So, meanwhile, I decided to make the best out of it and enjoy all the food I like such pizza, fresh bread, etc. . I'll be really happy once the process is over and I can finally start the diet properly, though.

[Freda66]

I posted this last night but don't see it on the list. I saw this thread in read, does that mean it addresses my question and I shouldn't post. Not sure, will need to read up more on the rules. In the meantime, here's the post again....I have eaten gluten all my life, decided two weeks ago to be gluten free and feel tons better, have a test on the 9th. Thanks for reading.

Hello,

I am very grateful for finding all of you. In tears I am writing this because I think I may have found the possible cause of all my health issues for the past several years.

I'm 43 and since about 38 I have had extreme joint point, nausea, migraines, stomachaches (stabbing pains usually in right side but also general "gut" aches...I carry Pepto Bismal with me everywhere and sip it right out of the bottle usually daily), tingling sensations in certain places, vertigo, ...the list goes on. And as of the past year, I've had on-going yeast infections that won't clear up.

Over the past several years I've been tested for MS, Lupus, HIV, rheumatoid arthritis, Crohn's, gallbladder issues, this list goes on too. Nothing came back positive. I did see a doctor who did non-conventional tests for hypothyroidism and he put me on Armour Thyroid which seemed to help me for awhile but the same things are starting over...the stomach problems never fully went away though.

Last fall I was hospitalized for chronic diarrhea, inflammation was found in my small intestine through a CAT Scan and a colonoscopy was done to rule out Crohn's. Crohn's was ruled out and I was told it was probably a virus. About a month later I went to Vegas and ended up in the emergency room due to stomach issues and diarrhea. I resigned myself to think that I just have a sensitive stomach with some lactose intolerance issues. Things however have gotten much worse. At times I am so bloated I look like I'm 7 months pregnant.

Based on a friend's suggestion (who has celiac's), I am trying a gluten free diet. I felt better after a couple of days but then I went out to eat and am sure I had gluten. The next day I had the gas and headache, was extremely bloated, the same old things. I'm not too familiar with a gluten free diet to be completely gluten free I guess. Anyway, today I called my gastro doctor and made an appointment to discuss and be tested for celiac's.

Finally, here is my question....I'm going on vacation in about a week back to Vegas again. This time I hope to see more than the emergency room. I want to try and continue to eat gluten-free because I feel better and I don't want to be sick on vacation. I return from vacation on August 28th, my test is on the 9th. In order for the test to be accurate do I need to be eating gluten from now until then? The doctor's office said they would do an endoscopy for the test. I don't know what to do.

Thanks for reading such a long post and for any advice.

Freda

[RESO]

Thanks Reso!

They said because I had both genetic markers as positive, I needed to have the endoscopy. I debated back and forth with the medical assistant to make double and triple sure about this. At first I was terrified b/c I knew that I had elevated blood calcium levels (which is sometimes indicative of cancer) and decreased phosphatase (?). Sometimes the internet is wonderful for research and other times it can scare the daylights out of ya!

my hubby is pissed beyond belief b/c he saw how much pain i went through after just 2 slices of bread.

oomph!

I'm googling 'gluten challenge' now just to be sure 3 weeks is enough, or can i get away with 2 weeks of hell. I still have time to decide...

Please don't forget that you have the right to refuse. It's your body, they are not the ones who will have to suffer so it is very easy for them to tell you that you "have" to make yourself ill in order to get diagnosed. You might end up with a false negative anyway, the standard I have heard about for gluten challenges is 3 months, not 3 weeks. Don't forget that you will most likely feel like total crap far beyond those 3 weeks or however long you are eating gluten while the gluten gets out of your system. Get a second opinion, I know with insurance this can be difficult, but not impossible. Another option is to find a doctor that will not insist you hurt yourself in order to get a "diagnosis". Doctors suck....

Whatever you decide, I hope you recover quickly.

R

[RESO]

I posted this last night but don't see it on the list. I saw this thread in read, does that mean it addresses my question and I shouldn't post. Not sure, will need to read up more on the rules. In the meantime, here's the post again....I have eaten gluten all my life, decided two weeks ago to be gluten free and feel tons better, have a test on the 9th. Thanks for reading.

Hi Freda,

The thread in red means it's a hot topic, not that you shouldn't post.

As far as the gluten challenge, I will let someone else give the definitive answer since I am not an expert. But may I suggest that if you must do a gluten challenge, reschedule the test until well after you come back from Vegas so you can enjoy your vacation? Just a thought.

R

[GFPamela]

The GI doc I saw today is having me eat gluten for just two weeks and then will do a gastroscopy. (Same as an endo?). Sounds better than 2-3 months, and I am going to do it, but I admit I'm a little uncertain about the short time period. He also will send a report to my insurance to see if they will preauthorize a genetic test. Will let ya'll know if two weeks was, in fact, enough time since I've been gluten free for about two years. I did admit that I occasionally find I've eaten something by accident that has gluten, so he feels I may not be completely healed.

[Cynth11]

The GI doc I saw today is having me eat gluten for just two weeks and then will do a gastroscopy. (Same as an endo?). Sounds better than 2-3 months, and I am going to do it, but I admit I'm a little uncertain about the short time period. He also will send a report to my insurance to see if they will preauthorize a genetic test. Will let ya'll know if two weeks was, in fact, enough time since I've been gluten free for about two years. I did admit that I occasionally find I've eaten something by accident that has gluten, so he feels I may not be completely healed.

Definitely let me know how that goes.

the other night I did some more research and sure enough, 6-8 weeks was the required minimum. I am just at that 6 week point.

So, I had one english muffin and.... OMG, ouch! not as dramatic as before, which is good, but I did look and feel very bloated and then I was really hungry the rest of the day. Not sure if that's due to a blood sugar issue or my body just felt starving for something.

I spoke with the Medical Assistant again (b/c my blood sugar was all over the place!) and he said to just do what I can. So I gave myself a break yesterday.

Just ate a bagel now. Never quite thought it would be this difficult to make the conscious decision to eat like that. You would think I'd be jumping at the chance to go eat things I haven't had in months, but I actually have to have this conversation with myself, weighing the pros and cons about the decision I am making.

So, my mental conversation with myself is this:

*get the diagnosis in case there is medication or a cure somewhere down the line

*nobody quite knows what's going to happen with this 'health care reform', so best to do this now while I can before I'd have to wait months or years after the system changes

*the celiac.com site has three articles that clearly state that with a doctor's diagnosis, you can deduct the price difference between gluten and gluten free products at the end of the year, so long as your medical costs are over 7.5% of your gross income (for the United States). This year for sure I'll be able to hit that percentage! I can't use that deduction w/o the proper diagnosis from the doctor.

At least I know that I can heal my body in time by going gluten free again after the endoscopy.

I endured several months of two high risk pregnancies and I'm rather loving the end result of two beautiful daughters. Six weeks should be easier to handle! Esp knowing that I won't have to do it again!

[bunnybaby]

My Doc wanted me to do 12 months back on gluten for a biopsy when I went last week. I simply could not do this it would kill me. So I said no way. I am now going to try and get a biopsy of my skin instead. It is a very frustrating system to get a diagnosis. But I know myself that the gluten is the cause of years of being passed from pillar to post and diagnosed with ME and Fibro and IBS - but the gluten fee diet solves 75% of the symptoms and if I eat even a sniff then my symptoms come back at their total worst straight away.

Love Ruth

[ravenwoodglass]

My Doc wanted me to do 12 months back on gluten for a biopsy when I went last week. I simply could not do this it would kill me. So I said no way. I am now going to try and get a biopsy of my skin instead. It is a very frustrating system to get a diagnosis. But I know myself that the gluten is the cause of years of being passed from pillar to post and diagnosed with ME and Fibro and IBS - but the gluten fee diet solves 75% of the symptoms and if I eat even a sniff then my symptoms come back at their total worst straight away.

Love Ruth

For those that have DH that is a great way to go as it will have much less of a chance of causing a nasty setback that far outlives the gluten injestion. I know in myself just a day or two of gluten will produce the rash. Just make sure your dermatologist is familiar with how to biopsy to look for celiac/DH. They need to biopsy beside the rash not the rash itself.