Biopsy

[kirstymorrison]

Hi!

I have been on a gluten free diet for 12 months apart from minor accidents when dramatic symptoms materialised. Could anyone possibly advise me how much gluten I am advised to consume over what time period for the results of a biopsy to be meaningful? I hope someone can help me here.

Thank you very much.

Kirsty

[KaitiUSA]

You need to be eating equal to about 2-3 pieces of bread a day for 3 months prior to testing.

Have you been diagnosed or what made you go gluten free to start with?

[Jenn2005]

My husband (Shane) has been on a gluten-free diet for 7 weeks. He had an endoscopy with a biopsy compatible with celiac sprue but negative bloodwork. We went from dr. to dr. trying to get a dx because we were not told about the biopsy results. The dr he is seeing now wants to do a repeat endoscopy & colonoscopy himself and wants him back on a gluten diet starting this past Monday afternoon. He is going to do the biopsy on this coming up Monday. So with Sunday being the prep day for the colonoscopy he will only be ingesting gluten for a total of 5 days & one meal on Monday afternoon. The diet was definately helping although we didn't realize how much until he went back on the gluten diet. I told the doctor I had read on this site that it would take months of ingesting gluten to get a true dx and he said that was not true that this would be plenty of time. This is a big university hospital as well as a teaching hospital and I totally believe what I read on here more than what he tells us. I hope we aren't wasting our time. Good Luck.

[KaitiUSA]

My husband (Shane) has been on a gluten-free diet for 7 weeks.  He had an endoscopy with a biopsy compatible with celiac sprue but negative bloodwork.  We went from dr. to dr. trying to get a dx because we were not told about the biopsy results.  The dr he is seeing now wants to do a repeat endoscopy & colonoscopy himself and wants him back on a gluten diet starting this past Monday afternoon.  He is going to do the biopsy on this coming up Monday.  So with Sunday being the prep day for the colonoscopy he will only be ingesting gluten for a total of 5 days & one meal on Monday afternoon.  The diet was definately helping although we didn't realize how much until he went back on the gluten diet.  I told the doctor I had read on this site that it would take months of ingesting gluten to get a true dx and he said that was not true that this would  be plenty of time.  This is a big university hospital as well as a teaching hospital and I totally believe what I read on here more than what he tells us.  I hope we aren't wasting our time.  Good Luck.

<{POST_SNAPBACK}>

Many doctors are wrong when it comes to celiac because not many are informed. If you are gluten free the damage heals and it will be hard to get accurate results after being gluten free.

If he had a positive biopsy and now a negative one..it would be because of the diet...if it is still positive he most likely had major damage.

Do you know what blood tests he had done to start with? Some are more accurate than others.

If he is doing well and had a positive biopsy why is he doing it again?

Also, what is the colonoscopy for? That must be for something else other than celiac because a colonoscopy covers the large intestine and celiac is in the small intestine.

I hope things work out good for you and your husband...good luck

[Jenn2005]

Kati - Thanks for the reply. Shane is having the test redone because the doctors felt he should have had a complete recovery by now if it was actually celiac. He was not by any means back to his old self but he was much better than before starting the diet. Before the diet he was barely able to get off the couch. He wasn't going anywhere. He would be exhausted just going out to the mail box or walking around in the yard. His main symptoms are nausea and bloating, along with fatigue, frequent trips to the bathroom (stools were improving - not firm but not dia. anymore), burping and the list goes on. He was improved to the point that he was getting up early every morining to go with me to take our son to school & he would look forward to going to the grocery store or Wal-Mart to get out of the house. He was building up stamina. That has disappeared since Monday night. He is back to feeling terrible. The blood test that the doctor ordered were with Quest Labs and read as follows:

Endomysial Antibody Screen (IGA) w/ Reflex to Titer - Negative

Antigliadian Antibody (IGG) 3 (Reference Range Less than 11 Normal)

Gliadin Antibody (IGA) 4 (Less than 11 Normal)

C-Reactive Protein .10 (Less than .80 Normal)

These test were done before the gluten-free diet was started but after he had been so sick that he was only eating a handfull of food a day for about a month and a half before these test. He would eat 1 scoop of white rice & canned pears (in own juice) and drink tea or water with it once a day if I forced him to eat. Occasionally he would eat a small piece of toasted french bread with the rice & fruit or have a few gold fish so he was definately eating gluten but not near the amount of a normal diet like before he got hit with this. So I guess my question is could this have been enough to have affected these blood test. Do a lot of people have positive biopsies and negative blood work. I was thinking of asking them to run the gene test & possibly the tTG you mentioned on another topic - I just don't know if it will do any good only being on gluten for 5 days. Any advice would be greatly appreciated.

Jennifer

[KaitiUSA]

Jennifer-

It took me 8 months gluten free to get back to normal. I had up and down days for months on the diet. Some people take longer than that and some people take shorter than that. It varies from person to person so I really don't think that 7 weeks is enough.

You can do the gene test because being on or off of gluten will not affect that.

The tTG test looks like it was not done and that is the best test for celiac...however since he has been gluten free it would be pointless to get it done.

If the biopsy is negative it doesn't really mean anything except that the diet is helping. If it is still positive it means that damage has not healed yet(usually when someone has a followup biopsy it is about 6 months gluten free because most damage heals in that time however with extensive damage it can take longer)

Biopsies have been the "gold standard" for diagnosis...if you have a positive one then you have it. However they can only rule celiac in, they can't rule celiac out.

I really don't think it is worth it...seeing him improve means the diet is working...it just takes time for symptoms to go away...think about it...the damage and everything occured over a long period of time and they won't go away overnight.

Please feel free to contact me if you need anything...I'll keep you guys in my prayers....

[Merika]

My husband (Shane) has been on a gluten-free diet for 7 weeks. 

<{POST_SNAPBACK}>

If your husband has been so sick he can barely get to the mailbox, seven weeks to perfect health would be a miracle worthy of a tv talk show. Your docs are under-informed. Seven weeks is however perfectly consistent with the results you are seeing. That your dh is feeling worse after going back on gluten is confirmation that eating gluten-free is helping.

I am usually pro-testing, but this is ridiculous! Where do they get this stuff??? Damage that's taken years to occur does not just disappear overnight!!!

Merika

[ravenwoodglass]

My husband (Shane) has been on a gluten-free diet for 7 weeks.  He had an endoscopy with a biopsy compatible with celiac sprue but negative bloodwork. 

  The dr he is seeing now wants to do a repeat endoscopy & colonoscopy himself and wants him back on a gluten diet starting this past Monday afternoon.  He is going to do the biopsy on this coming up Monday.  So with Sunday being the prep day for the colonoscopy he will only be ingesting gluten for a total of 5 days & one meal on Monday afternoon. 

The diet was definately helping although we didn't realize how much until he went back on the gluten diet. 

This is a big university hospital as well as a teaching hospital and I totally believe what I read on here more than what he tells us.  I hope we aren't wasting our time.  Good Luck.

<{POST_SNAPBACK}>

If your husband has only been gluten-free for 7 weeks then the short time injesting may be enough. As other posters have pointed out the damage doesn't heal overnight and the 5 days will likely be enough to show up. If he becomes extremely ill do not be afraid to contact the GI. Mine cancelled my endo and said that was all he needed for the diagnosis. He also apologized for not looking for it for years.

If the diet was helping though you already have your answer to the gluten. Have you thought of seeing an allergist to check for other food intolerances? Also I am assuming you have made your home gluten-free and check shampoos and toiletries. It can take awhile gluten-free to be back to yourself again. But he will be back and most likely feel better than ever in awhile.

[chatrbug]

i am so glad you asked this question. i was just reading the other post about having to have the gluten. i have a biopsy on thursday and have been gluten-free for a week...okay im not completely..i know there are lots of hidden glutens im still ingesting. ill just keep going the way i am..since im still sick, until after the biopsy.

[Jenn2005]

Thanks again for all the replies to my comments. Yes we have made the house totally gluten-free (to the best of our knowledge). Our son & I went on the gluten-free diet as well - I told our son that he could have gluten foods outside of the house but in the house its all gluten-free. He was totally in agreement with this becuase he wants his daddy to get better (and of course since he's only 9 he doesn't have a whole lot of choice) Shane (husband) is continuing to get worse feeling everday I'm glad this is over on Saturday. I'm going to ask the doctor about running the gene test on him also and I was thinking I should probably have my son checked also. He has had stomach issues since he was a baby. His growth wasn't affected but he has had stomach aches after every meal or snack since I can remember and he has taken himself off of things like bread and milk. We had to take him to a pediatric GI about 3 years ago for continued stomach pain and they told us after a very quick examination that he had intestinal growing pains. They said it was very rare to get them in the intestines that most kids get them in the legs. Now I'm starting to wonder. I guess we'll just take it one day at a time. I'm glad to hear about all the people who are feeling so much better. That really makes us feel like there is a light at the end of tunnel. I just keep thinking it could always be worse and there are a lot of people who are in a whole lot worse shape or have something that can't be healed by diet or at all so at least that is something to be thankful for when we say our prayers tonight.

[jerseyangel]

Your poor husband sounds a lot like me the last couple of years--I've been gluten-free for 4 months now and I can say that I seemed to "turn the corner" after 3 months. That is not to say that I'm back to normal (whatever that is!), but I agree with the others in that it takes time-I'm finding that out as I go. 7 weeks probably isn't enough time considering how sick he was. I wish the best to your family--it will get better

[Merika]

they told us after a very quick examination that he had intestinal growing pains.

<{POST_SNAPBACK}>

Intestinal growing pains? Where do they come up with this stuff??? Have your son go in for blood work too. (sorry)

Merika

[Guest BellyTimber]

In the UK they say, at least 4 slices or equivalent by weight, a day for 3 months.

I'm in the same position as your husband except it's more like 3 years for me now and my stamina wasn't as badly affected before (except for a couple of years after a severe infectious illness 17 years ago).

Even after a mere 7 weeks recovering I would have thought 5 days is nowhere near long enough.

Check out the reasoning of these people and choose your own timings and timeframes according to what you think is best for your interests present and future.

[Guest nini]

My opinion for what it's worth is that your husband Steve has his answer, and no further testing is necessary, any more time spent on gluten is just that much longer that it will take him to recover. 7 weeks is nowhere near enough time for a complete recovery. His Dr. must be nuts. If his biopsy was initially positive, despite the blood test results, he HAS CELIAC, no bones about it... geez. The likelihood that your son has it too is really high. If you want to spend more money and time you can get the genetic testing done, or you can do your own dietary testing and see if the health of your family improves. But IMHO any more testing is a waste of time. GET YOUR FAMILY OFF GLUTEN NOW.

I'm gluten-free now for 2 1/2 years and still don't feel completely normal. I was like your husband. Very very sick, no energy, I WAS LITERALLY DYING... my daughter was showing the same symptoms that I had as an infant and has shown dramatic improvement on the gluten-free diet.

Yes, I am very opinionated on this subject, because I don't want anyone to stay sick one more day than they have to. You already have your answer.

do what you feel you need to do, I'll get off my soap box now.

Also, at 7 weeks I was still accidentally ingesting hidden glutens. He is probably not as truly gluten free as he thinks he is. It truly takes time to get the hang of the diet and the fact that he was showing improvement is good enough for me.

[Ursa Major]

I should probably have my son checked also.  He has had stomach issues since he was a baby.  His growth wasn't affected but he has had stomach aches after every meal or snack since I can remember and he has taken himself off of things like bread and milk.  We had to take him to a pediatric GI about 3 years ago for continued stomach pain and they told us after a very quick examination that he had intestinal growing pains.  They said it was very rare to get them in the intestines that most kids get them in the legs.  Now I'm starting to wonder. 

<{POST_SNAPBACK}>

Wow, I can't believe what I am reading here, Jenn. A pediatric GI said this? Unbelievable. He should be tarred and feathered! I agree with the others that your son needs to be off gluten as well. Don't bother with testing, just get him on a gluten-free diet! It's bad enough they claim kids get growing pains in their legs (right, I've had them from the age of three or four until two weeks ago, when I took myself off gluten, and I'm 52). There is no such thing as growing pains, not in the legs, and certainly not in the bowels!

[tess]

My husband (Shane) has been on a gluten-free diet for 7 weeks.  He had an endoscopy with a biopsy compatible with celiac sprue but negative bloodwork.  We went from dr. to dr. trying to get a dx because we were not told about the biopsy results.  The dr he is seeing now wants to do a repeat endoscopy & colonoscopy himself and wants him back on a gluten diet starting this past Monday afternoon.  He is going to do the biopsy on this coming up Monday.  So with Sunday being the prep day for the colonoscopy he will only be ingesting gluten for a total of 5 days & one meal on Monday afternoon.  The diet was definately helping although we didn't realize how much until he went back on the gluten diet.  I told the doctor I had read on this site that it would take months of ingesting gluten to get a true dx and he said that was not true that this would  be plenty of time.  This is a big university hospital as well as a teaching hospital and I totally believe what I read on here more than what he tells us.  I hope we aren't wasting our time.  Good Luck.

<{POST_SNAPBACK}>

[CeliacMe]

It disgusts me that your doctor wants him back on a gluten diet. WHAT AN IDIOT! What the heck difference does it make to him if your husband has gluten or not? This guy should work for the association or wheat farmers! That irks me to no end. He (your husband) obviously has a gluten problem. I don't know about your husband, but I suffer fatigue symptoms for about a month after having a gluten incident (accidental). It stinks, it's like you're not yourself. If the biopsy showed Celiac- guess what? NO MORE GLUTEN. I can't believe that he would want to poison your husband for another day- let alone 5. Your doctor is a stupid idiot. RUN!

My husband (Shane) has been on a gluten-free diet for 7 weeks.  He had an endoscopy with a biopsy compatible with celiac sprue but negative bloodwork.  We went from dr. to dr. trying to get a dx because we were not told about the biopsy results.  The dr he is seeing now wants to do a repeat endoscopy & colonoscopy himself and wants him back on a gluten diet starting this past Monday afternoon.  He is going to do the biopsy on this coming up Monday.  So with Sunday being the prep day for the colonoscopy he will only be ingesting gluten for a total of 5 days & one meal on Monday afternoon.  The diet was definately helping although we didn't realize how much until he went back on the gluten diet.  I told the doctor I had read on this site that it would take months of ingesting gluten to get a true dx and he said that was not true that this would  be plenty of time.  This is a big university hospital as well as a teaching hospital and I totally believe what I read on here more than what he tells us.  I hope we aren't wasting our time.  Good Luck.

<{POST_SNAPBACK}>

[tess]

Well I understand your need and desire to know. My daughter is 17 months and has been gluten-free (also dairy and soy) for 3 months. It is a lot of work and money being on this diet. We do not have a definative answer with blood work if she has celiac or not and it is very frustrating. I spoke with our doctor about doing a biopsy and she said that she could do one after 4 weeks of being on gluten. She said that there is a possibility of a negative result but that by her phsyical behavior we can also assume diagnosis, which we already have done. We are frustrated because we do not want to expose her to a life long gluten-free diet if she doesn't have to, but we also do not want her to be sick so we can do a biospy. We like to have answers and believe we are going to risk it. Also, she is so young and has not had years of gluten damage that a few weeks is going to do too much damage. Maybe selfish on our part but she has her whole life in front of her. Our biggest concern, like you, is the time on gluten long enough. I also heard that it needs to be 3-6 months, but our doctor also disagrees with this. I am worried about a false-positive and then what do you do with that information.

Good luck with your husband. I know I probably didn't give you much of an answer but at least you know someone else is going through the same dilema.

Have you asked about genetic testing. There is a gene they now know is celiac. If you have it and the systoms you most likely have it. If no gene, then no way you can have celiac.