Is It Necessary To Eat Gluten Foods Prior To Endoscopy?

[BritChick]

Hi. Just discovered this website today. Like many here, I've struggled with digestive problems for years. Been diagnosed with spastic colon and put on phenobarb, anxiety and put on paxil, IBS and told to eat more fibre. 4 years ago when my quality of life seemed miserable (I couldn't eat an orange without throwing up, waking up nauseous almost every morning, running to bathrooms in restaurants after eating and having to hang out there while my fellow diners wondered where I was) I went to a basic diet and discovered wheat appeared to be my problem. 3 weeks after eliminating wheat from my diet my digestive problems seemed cured! I couldn't believe the problem was that simple. For the most part I've been wheat free and practically gluten free by assocation since 2003. Recently while researching wheat free recipes I found celiac information and read about celiac rashes. Well I've had a rash for over 10 years that comes and goes from behind my knee and it's just like the celiac sites describe for gluten allergies. The rash never goes away completely and when I accidentally consume wheat (or am naughty and pay later) the rash resurfaces with a vengance. This spurred me to action to see if I'm celiac. I just took the blood test today and am scheduled for the biopsy Tuesday. My concern is that with little gluten in the diet will the results show properly? I have the rash which I assume is an indicator that all's not well, but I noted from some postings that people were loading up on gluten foods prior to testing. I ate a cobbler for dessert 2 1/2 weeks ago (it was my wedding anniversary and I couldn't help myself) which kept me up 2 nights and made me terribly sick for about a week and my new doc. says this is sufficient gluten in my system. Does anyone have any thoughts on whether I should be eating gluten foods prior to testing? Part of me feels that it doesn't matter what the tests show I think the diagnosis fits, but part of me would like to have that confirmation to know I'm on the right track. Thank you in advance for your thoughts and comments.

[MySuicidalTurtle]

I know that for a blood test or colonoscopy you need to have eaten gluten. Sometimes a true diagosis helps people not cheat but it really does not matter in the end unless you need the official word, BritChick. Good luck!

[BritChick]

I know that for a blood test or colonoscopy you need to have eaten gluten. Sometimes a true diagosis helps people not cheat but it really does not matter in the end unless you need the official word, BritChick. Good luck!

Thanks for the reply. I've seen references regarding "the gluten challenge" so I'm off to research whether it's something I can tackle prior to Tuesday or if that's too late in the game.

[num1habsfan]

I think it depends on the doctor and just what he's testing for. I've both had to and not had to for colonoscopies and endoscopies.

~ Lisa ~

[gfp]

The time needed to consume gluten prior to blood or biopsy seems variable but definately a matter of weeks....

The accuracy of both in terms of false negatives increases ... the longer you are on the gluten challenge.

IN your case it really depends how much/often you cheated ... but even that is very subjective.. even if you had a food diary for the last 3 months I doubt we could say yes/no.. unless you were eating some everyday.

I would seriously consider postponing the tests for at least 2 weeks...

As for the biopsy... I'd definately wait for reliable blood tests and consider not bothering with the biopsy if you are not bothered about joining CUK and getting free food on the NHS (assuming your a Brit for your name)...

The biopsy might show the extent of damage ..., it might be a good idea to rule out other things as well but for actually diagnosing celiac disease its next to useless and in some ways worse than useless since by definition you need to cause significant damage to an important organ....

If you do blood tests and your GP goes along you can do them say every week or fortnight... and stop the challenge as soon as they show abnormal results.... if they are not showing abnormal results then its 98% certain you don't have celiac disease and hence doing no damage ... if you are you can either schedule a biopsy ASAP or not.. (if its a matter of a few days then why not?) ..

The only problem is if blood is +ve and the biopsy -ve .... and this is the real problem with a biopsy.. unless the damage is huge there is a good chance to miss it.. so you need to ask yourself and your GP what if....

I strongly suggest this is better done BEFORE the tests.... since after the GP has a nice -ve he can decide to take... instead of the other +ve... make it clear first that the biopsy is just a follow-up for the amount of damage...

Look at it like this.. if the blood test is +ve and the biopsy -ve its 98% certain that if you keep eating gluten and foir some reason die and they do a postmortem exam of the intestine they would find dmaaged villi ... that could have easily been missed the day before in a biopsy...

The only real way of making the biopsy more reliable is doing more damage to yourself...

Don't get fobbed off that its OK, this damage repairs... usually it does... not always... BUT also in the meatime you can trigger other problems such as neurological or thyroid... and these associated symptoms will probably not reverse or certainly not quickly!

[BritChick]

The time needed to consume gluten prior to blood or biopsy seems variable but definately a matter of weeks....

The accuracy of both in terms of false negatives increases ... the longer you are on the gluten challenge.

IN your case it really depends how much/often you cheated ... but even that is very subjective.. even if you had a food diary for the last 3 months I doubt we could say yes/no.. unless you were eating some everyday.

I would seriously consider postponing the tests for at least 2 weeks...

As for the biopsy... I'd definately wait for reliable blood tests and consider not bothering with the biopsy if you are not bothered about joining CUK and getting free food on the NHS (assuming your a Brit for your name)...

The biopsy might show the extent of damage ..., it might be a good idea to rule out other things as well but for actually diagnosing celiac disease its next to useless and in some ways worse than useless since by definition you need to cause significant damage to an important organ....

If you do blood tests and your GP goes along you can do them say every week or fortnight... and stop the challenge as soon as they show abnormal results.... if they are not showing abnormal results then its 98% certain you don't have celiac disease and hence doing no damage ... if you are you can either schedule a biopsy ASAP or not.. (if its a matter of a few days then why not?) ..

The only problem is if blood is +ve and the biopsy -ve .... and this is the real problem with a biopsy.. unless the damage is huge there is a good chance to miss it.. so you need to ask yourself and your GP what if....

I strongly suggest this is better done BEFORE the tests.... since after the GP has a nice -ve he can decide to take... instead of the other +ve... make it clear first that the biopsy is just a follow-up for the amount of damage...

Look at it like this.. if the blood test is +ve and the biopsy -ve its 98% certain that if you keep eating gluten and foir some reason die and they do a postmortem exam of the intestine they would find dmaaged villi ... that could have easily been missed the day before in a biopsy...

The only real way of making the biopsy more reliable is doing more damage to yourself...

Don't get fobbed off that its OK, this damage repairs... usually it does... not always... BUT also in the meatime you can trigger other problems such as neurological or thyroid... and these associated symptoms will probably not reverse or certainly not quickly!

Thank you for the good advice. From everything I'm reading it appears my new doc. is not really up to speed on celiac disease. I've been avoiding wheat for the past 3 years, but have probably been ingesting gluten in small amounts. A cooking sauce I used earlier this week had Modified food startch and a couple of other suspect items and I was unwell after eating for example. I'm a Brit living in the US and I have insurance but have to pay sizeable co-pays so I will definitely take your advice and re-consider the necessity of the biopsy or at least find out whether my doc is looking for the damaged villi (sp?) I took the blood test yesterday and I think I will see what that says (should be back in the next couple of days) and if positive I'll do the scheduled biopsy Tues, and if not, I'll postpone. I'm experiencing some other symptoms that may or may not be related to celiac disease so I was hoping that if I had a diagnosis I could at least get some of these doctors to pay more attention and not just blow me off. I have terrible foot cramps several times a week (my toes curl up and it's agony). The other day I was going through airport security and had trouble walking the cramps were so bad. This has been going on for several months and I'm reading muscle cramps an be related to celiac disease sometimes due lack of absorption of nutrients. My GP is clueless as to why this is happening. It's just shocking to me that so many of these doctors are ignorant of celiac disease, even my new so called digestive disorder specialist who knows what it is, doesn't seem to have the knowledge for when to test. Disappointing to say the least. Now that I'm armed with more information I will try to discuss these concerns with the new doc. Thanks again, your advice is appreciated.

[ravenwoodglass]

If you have an active DH rash and it sounds like you do, and the biopsy you are talking about is the biopsy of the area adjacent to the rash as long as it is active and the biopsy is done correctly you shouldn't have to gluten load.

If you are talking about an endoscopy and biopsies, not a colonscopy (celiac can not be diagnosed from the large intestine) then most doctors would want you on gluten heavy for at least a couple of months. The endo biopsies are really hit and miss, some of us have enough damage and the docs are lucky and hit the right spot and others either the damage isn't severe enough or the wrong spot gets biopsied and we get a false negative.

For some the body can do a better job of diagnosing celiac or gluten intolerance than the doctors can if it is given the chance.

[Ursa Major]

Unfortunately, it is very likely that your blood work will be negative, since you really haven't been eating enough gluten for it to be positive. For an intestinal biopsy to be positive, you'd have to eat a lot of gluten every day for at least three to six months before you would get a positive. On the other hand, if your rash (beside the rash, really) is biopsied, that is another matter. A dermatologist would do that. If you are officially diagnosed with dermatitis herpetiformis, you automatically have a firm celiac disease diagnosis.

Those cramps are likely caused by a magnesium deficiency. See if you can find a calcium/magnesium/vitamin D supplement that contains calcium and magnesium on a 1:1 basis.

You ought to have your levels of essential nutrients checked, to see where you need to supplement. Because celiac disease causes malabsorption of these nutrients you are likely deficient in quite a few. Ask your doctor to test for levels of ferritin (iron) and hemoglobin, vitamin D, vitamins B6 and B12, vitamin K, potassium, calcium and magnesium. Also, a bone density scan is a good idea.

Really though, you figured out four years ago that you are gluten intolerant. Why not just keep doing what you have been doing (without cheating, though), rather than now chasing after an 'official' diagnosis?

You know it is likely celiac disease, or at least gluten intolerance (some doctors want to remove that distinction). Just make up your mind that from now on you will be completely eating gluten-free, and your rash will likely clear up. You have probably kept it going all these years because you occasionally eat gluten foods, and because you weren't too concerned with rye and barley.

It is possible to make all those favourite foods you would like to have in a gluten-free version. And even if you make those for your whole family, they would probably not even notice the difference.

[BritChick]

Unfortunately, it is very likely that your blood work will be negative, since you really haven't been eating enough gluten for it to be positive. For an intestinal biopsy to be positive, you'd have to eat a lot of gluten every day for at least three to six months before you would get a positive. On the other hand, if your rash (beside the rash, really) is biopsied, that is another matter. A dermatologist would do that. If you are officially diagnosed with dermatitis herpetiformis, you automatically have a firm celiac disease diagnosis.

Those cramps are likely caused by a magnesium deficiency. See if you can find a calcium/magnesium/vitamin D supplement that contains calcium and magnesium on a 1:1 basis.

You ought to have your levels of essential nutrients checked, to see where you need to supplement. Because celiac disease causes malabsorption of these nutrients you are likely deficient in quite a few. Ask your doctor to test for levels of ferritin (iron) and hemoglobin, vitamin D, vitamins B6 and B12, vitamin K, potassium, calcium and magnesium. Also, a bone density scan is a good idea.

Really though, you figured out four years ago that you are gluten intolerant. Why not just keep doing what you have been doing (without cheating, though), rather than now chasing after an 'official' diagnosis?

You know it is likely celiac disease, or at least gluten intolerance (some doctors want to remove that distinction). Just make up your mind that from now on you will be completely eating gluten-free, and your rash will likely clear up. You have probably kept it going all these years because you occasionally eat gluten foods, and because you weren't too concerned with rye and barley.

It is possible to make all those favourite foods you would like to have in a gluten-free version. And even if you make those for your whole family, they would probably not even notice the difference.

Thank you so much for all of the good advice. The biopsy of the area next to the rash sounds like a much better way to go to test for celiac disease (so much less invasive than the endoscopy biopsy which I WAS scheduled for Tues). What a great website resource you have here. I reached out for help and found it. Thank you for making me feel better when I felt like yet another doctor was failing me. I'm definitely going to talk to a dermatologist. I've had the rash for 10+ years, it never goes away completely, and the digestive doc seemed to think it was dermatitis herpetiformis. Thank you for letting me know I'm not alone with this crazy diet!