Going Gluten Free Before Biopsy

[Farmer Brown's Cow]

Hi,

I'm new to the forum.

I've been in college for two years now. The first semester went off well. The 2nd was wrecked with stomach pain. The 3rd was horrible with beginning joint pain. This latest one had been a nightmare.

Like most people, the doctor didn't have an answer. It was a pure coincidence (my friend was being tested for Celiac--negative) that I even thought of Celiac. I've always had intermittent stomach issues. I thought it was stress. Too much food. Not enough.

I did a week off gluten--felt marginally better, went to the nurses and bam! Positive test results.

I had to wait until I got home to go to a GI. He recommended to got with a biopsy. The next available one is not until the August 1st.

I've been eating gluten ever since. I've felt so much better off gluten/dairy.

I was wondering if I could go off gluten for a month and a half then go back on two weeks before. I have felt horrible test past few weeks and would like to get back on track with my life.

What do you think? Any advice?

[Aleshia]

Hi,

I'm new to the forum.

I've been in college for two years now. The first semester went off well. The 2nd was wrecked with stomach pain. The 3rd was horrible with beginning joint pain. This latest one had been a nightmare.

Like most people, the doctor didn't have an answer. It was a pure coincidence (my friend was being tested for Celiac--negative) that I even thought of Celiac. I've always had intermittent stomach issues. I thought it was stress. Too much food. Not enough.

I did a week off gluten--felt marginally better, went to the nurses and bam! Positive test results.

I had to wait until I got home to go to a GI. He recommended to got with a biopsy. The next available one is not until the August 1st.

I've been eating gluten ever since. I've felt so much better off gluten/dairy.

I was wondering if I could go off gluten for a month and a half then go back on two weeks before. I have felt horrible test past few weeks and would like to get back on track with my life.

What do you think? Any advice?

I went off gluten for about a month and 1/2 and my GI told me that I would only need to be back on gluten for 5 -7 days for the biopsy. also my pediatrician just told me that the GI's at childrens hospital told them that a month off of gluten wouldn't affect a blood test... I disagree with that so will have the kids on gluten for about 3 days before hand just to be sure. but if you feel better off gluten it would be good to stay off of it as much as possible! just had my endoscopy done about 5 days ago and am expecting results back after the weekend. GI told me that he saw possible signs of celiac but said that could just be because he was looking for it so he wants to wait till the biopsy is back to say for sure.

[Tim-n-VA]

This is one of a group of related questions that come up a lot where the answer depends on how important a definitive medical diasnosis is to you. Some people have family issues where a self diagnosis isn't sufficient.

IF you need that definitive biopsy-based diagnois, you are much better off staying on gluten until August because different people heal quicker, etc. and you can't predict the impact of one month off and one month on. Any attempt to go back on gluten later for a second test will be even worse. Gluten reactions tend to get worse when you've been off gluten.

The two sides are that some people are okay with knowing they feel better without gluten and don't need the definitive diagnosis. Others want to know the definite diagnosis for family members who think its "all in your head". The other main reason for needing the definite diagnosis is that Celiac overlaps other diseases in symptoms and some can even cause false lab results. Since a disease involving a major body system (immune in this case) makes it more likely that you'll have other diseases in that system (thyroid, diabetes, etc.) there is at least some medical benefit to knowing exactly what is causing that reaction to gluten.

[aikiducky]

I'd also vote for staying on gluten until the biopsy. You have a chance now to get a definitive diagnosis, don't risk it. You might end up with a borderline result which will either lead to a lot of discussion or to continued testing. I'd stay on gluten until the biopsy, then go gluten free immediately afterwards since you already know you feel better when you do.

Pauliina

[hez]

I think this is one of those times where you really need to know your own psyche. If long term, you know that you would only follow the diet if you had a formal dx, I would eat the gluten. If you have the psyche that does not need a firm dx go off. It really is a matter of personal choice. I was off the gluten for only two weeks before the biopsy. However, my damage is so severe I could have been off gluten for months and the results would have been the same. I know me, I need a firm dx. Otherwise, I would always question the results which would open the potential for me to be reckless with my diet.

I think you will find this forum a great resource! Welcome to the board!

Hez

[tarnalberry]

Ask yourself why you need more than a positive blood test. Ask your doctor to. (The biopsy is going out of favor as "the gold standard" and more and more doctors are making final diagnoses on blood test panels alone.) Ask yourself if YOU need the biopsy over what you know to be true from experience. And if you do need it - and that's a perfectly fair answer - STAY ON GLUTEN. You don't know how fast your body is going to heal or be damaged by gluten, particularly considering the onset of your symptoms around a year ago. Staying off for almost three months, and then being back on for only a few weeks I would bet gives you pretty decent odds for a false negative. Why go through with a test if you're setting yourself up for inconclusive results?

[Fiddle-Faddle]

I went off gluten for about a month and 1/2 and my GI told me that I would only need to be back on gluten for 5 -7 days for the biopsy. also my pediatrician just told me that the GI's at childrens hospital told them that a month off of gluten wouldn't affect a blood test... I disagree with that so will have the kids on gluten for about 3 days before hand just to be sure. but if you feel better off gluten it would be good to stay off of it as much as possible! just had my endoscopy done about 5 days ago and am expecting results back after the weekend. GI told me that he saw possible signs of celiac but said that could just be because he was looking for it so he wants to wait till the biopsy is back to say for sure.

Aleshia, I really believe that your GI and the GI's at Children's Hospital are wrong wrong WRONG.

It takes WAY more than 5-7 days to destroy the villi enough to get a positive biopsy. Most of the studies I have seen quoted on this board call for a minimum of 4 slices of bread for a minimum of 2 months, and even then, there is a possibility of having a negative result, as villi damage is often patchy and invisible to the naked eye after YEARS of gluten ingestion.

If your bloodwork was positive and your dietary response was positive, and if there's nothing else the doctor needs to look for (say, Barrett's Esophagus, which is a precancerous condition sometimes seen in untreated GERD), then an endoscopy simply pads the GI's bank account. You already have your answer, don't you?

There is no reason to do an invasive test if the answer is already known. And "First, do no harm," is supposed to be first on the doctor's priority list.

Obviously, gluten is doing you AND your child quite a bit of harm.

[grommet]

It is crap that we have to eat what is making us ill to get a gold standard diagnosis, but you are setting yourself up for an inconclusive result if you go gluten-free now.

Make the best of the time you have left to eat what you want when you want. KFC, Pizzas etc, cos you'll never have 'em again.

I had been gluten-free for 2 years (not knowing anything about coeliac) and then tried for a diagnosis. I ate loads for 7 weeks and it was a negative biopsy. So no diagnosis. Are you prepared for that? If so then you have to do what you think is best.

For those who haven't seen it already - this is useful re clinical guidelines etc:

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[Farmer Brown's Cow]

Thanks for the overwhelming support. I think I will stay on gluten. Since I come from an immigrant parents, it's much easier to explain a disease, than an intolerance.

Thanks everyone.