Dr Suggests Gf Diet Before The Biopsy?

[michelle]

Hi i am to have a biopsy soon & have problems for over 8 mths now, on researching celiac i think i may have it, after going gluten-free im feeling a lot better & dont suffer intestinal symptoms anymore & no more headaches, dizzyness, eye problems or funny vibrations in my legs, ive been gluten-free for virtually 4mths now & on seeing my doc he says to stay on the gluten-free diet & he will do a biopsy?? but i have read you should be ingesting the stuff for a positive result?

does he know what hes taliking about?

he seemed to know little about extra-intestinal symptoms & when i told him a ate a doughnut the other day & suffered the same symptoms i used to he just shrugged it off saying it was nothing to do with celiac disease?

it could be possible im just intollerant to gluten but if he feels he needs to biopsy me then why does he insist i stay gluten-free......

what should i do, i know if i eat it again i will get ill, my one douhnut proved that last week!!

please any advice would be good!

i did have the blood screen but i was also gluten-free when i had that taken also & yes it came back negative!

thanks Michelle.

[KaitiUSA]

Yep that would be why they came back negative. You need to be eating gluten in order to get an accurate reading. When you are gluten free your damage that has been done to your intestines heal and they say usually within 3-6 months the damage is healed. They usually recommend you eating alot of gluten everyday for 3 months for testing(both blood and biopsy)

I would recommend finding a doctor that is well versed in celiac and telling him what your symptoms were, how you are now feeling better, and when you eat gluten you feel it.

Listen to your body though...whether you are in fact a celiac or just gluten intolerant you will need to avoid gluten and your body is telling you that.

If you need any help just let me know and if you have any questions you came to the right place everyone here is great

[michelle]

Thanks kaiti, i know your right about listening to your body!!

as for changing DRs thats out of the question as being here in England im on the NHS & you only really get the DR your given!! i could ask for a second opinion though, i think i will start eating the gluten again even though i dont want to but i need to get an accurate result from the biopsy dont i!

as for the DR i just hope he knows how to read the results when i get it done, i will make sure i get a second opinoin if i need one.....

irrelevent of the results im going gluten-free after the test as i know it works for me after being gluten-free for 3-4mths ive just started to be able to tolerate milk now i wonder how long it will take me to be intolerant of it again!!

cheers michelle...

[KaitiUSA]

There are some self diagnosed celiacs on here...is there a need to get the biopsy or testing done? If you are fine with being gluten-free without a diagnosis then do not get back on gluten but if you really want a biopsy to know then the only way to have accurate results is to get back on gluten

Good luck

[Guest BellyTimber]

Hullo Michelle I live in England too.

We can discuss products on the UK & Europe section of the board.

I'm going through a strange doctor situation as well, mine has lasted two and a bit years. A job and a certificate are involved too...

[plantime]

You have to have gluten damage for tests to come back positive. Some people heal in just a couple of months, others it takes even a year or more. I think it depends on how much damage was done, and how quickly your body heals. I don't know why your doc said to be gluten-free before the biopsy, it just seems strange to me. You could find out when the biopsy will be done, and make sure you eat gluten until then. Good luck with it all! And please keep us posted!

[Guest BellyTimber]

It is a lot of hard work trying to figure out what the thinking is when they don't explain!

Here is some correspondence I have just received from Coeliac UK and that is very good because they have given me some of the information I would have expected my GP to give me two and a bit years ago. I have interleaved comments of my own.

"With regards to reintroducing gluten into the diet for a biopsy it is recommended that this is done for 6 weeks prior to the test being carried out, at a level of 10g gluten per day. This amount of gluten can be found in 4 slices of bread or the equivalent amount of pasta, breakfast cereal, pizza etc. This is not an exact science as there is so much variation in the level of sensitivity to gluten amongst people with coeliac disease."

This is informative.

"Introducing gluten back into the diet will always cause gut damage in people with coeliac disease, but when this is compared with many years of gluten ingestion that may have previously occurred and considering this damage will heal again once gluten is omitted, it is worth going through this to gain a proper medical diagnosis."

The last statement overrides the individual reality of different people. I have been advised that after 2 and a bit years I must not have a biopsy. This is because of the range of symptoms that are both gastrointestinal and other, and we are learning how many of the symptoms continue indefinitely for some people.

"As for the length of time you will wait for a biopsy, this depends on the area in which you live and the length of the waiting list, which could be up to a few months."

This useful to be told because one can then plan!

"Neuropathy is a symptom of coeliac disease, but in the majority of sufferers it improves following diagnosis and commencement of the gluten-free diet. It is not one of the more common symptoms and is not suffered by the majority of people diagnosed with coeliac disease."

Leaving aside issues of diagnosis and statistics, this doesn't tell me how to cope or plan if I have been having nerve symptoms.

"...biopsy should always be performed when coeliac disease is suspected - there are guidelines which have been produced by the British Society of Gastroenterology which you could direct your GP to."

Presumably in the U.S. and other countries similar guidelines exist.

I think the thinking is that we will see if the patient improves in say 2 months gluten-free, and then is probably the time for the biopsy to be scheduled. What doesn't help the patient is the way they don't talk about any of the time frames or what the strategy actually is. Thereby leaving us in the dark about what is in store and what it means.

"Recommendations have been made that results from blood tests should include instructions on the next step, i.e a positive blood test should be followed by referral for a biopsy before any changes are made to the diet."

Obviously a needed recommendation because it's come to light only one in three celiac disease patients is being diagnosed even according to established criteria.

Does the last point contradict what your doctor is doing - have you go gluten-free for a short period?

Which is the same as my doctor presumably had in mind but he forgot to explain it to me which is why I'm still (more or less) gluten-free without a biopsy well over two years on and I'm digging my heels in, it's too late for one.

I think the damage gets worse when you infringe after a longer period gluten-free.

After a "two month trial" it's possible it's relatively safe for some but only you must decide. I don't think it's ever been studied. Those of us that are reporting still sick after months or years gluten-free, did we mostly go gluten-free and then eat gluten for a biopsy? the answers are probably on these pages already but I haven't time this morning to check!

Best wishes,

[Guest nini]

my personal opinion (and I'm not an expert, just someone with celiac) is that if someone shows positive results from the gluten free diet, and continues to show positive results, then WHY continue on with the testing? Why is it so important to have that piece of paper that says "x"? I believe that gluten is toxic to a number of people, not just those with full blown celiac damage. If your body is telling you that you do well without gluten and continue to do well, then I suggest listening to your body. The medical community doesn't want us to do this, because there is no profit in it. The tests are costly and not always accurate. I've heard of people getting a negative test result, then continuing to consume gluten, then several years later ending up with even more problems related to celiac and getting hospitalized with complications. What is it, you can get a false negative, but not a false positive? ??????

[mistyfog]

Hi,

As to "why push to get a confirmed diagnosis"... I am pondering that too. Should I put my son through all the testing?

A friend who has a celiac daughter, said... Yes, absolutely get a diagnosis!!!

Her reasoning is that 'down the line' there may be some situations, especially for kids, where you'd need to have a definite diagnosis. For instance, getting a 504 plan put in place in school for a celiac child - will force the school to recognize and address the health issue. Same reasoning for college accomodations.

Another situation which might require a "confirmed diagnosis" is the tax laws? Like if you wanted to deduct the cost of the special foods etc. I might be blathering here about stuff I know nothing about, but I just wanted to share those thoughts.

Regards,

Misty in Mass

[Guest nini]

I would think that as long as you can get a medical dr. to concede that YES you have a Gluten Intolerance and to put it in writing ie: a letter that you can keep on file, then technically that should be enough? I would think...

[LynG]

Here in UK you can only get prescription gluten-free items if you have been diagnosed with celiac disease or DH (or another condition requiring gluten-free diet- eg autism).

Therefore, in UK, it seems best to get a diagnosis of celiac disease through eating gluten & being tested & found to have a gluten reaction (damage).

I agree it seems very hard to be eating gluten if one feels much better gluten-free - but to be certain of a correct celiac disease diagnosis it seems the only way.

****************

my personal opinion (and I'm not an expert, just someone with celiac) is that if someone shows positive results from the gluten free diet, and continues to show positive results, then WHY continue on with the testing? Why is it so important to have that piece of paper that says "x"?  I believe that gluten is toxic to a number of people, not just those with full blown celiac damage. If your body is telling you that you do well without gluten and continue to do well, then I suggest listening to your body. The medical community doesn't want us to do this, because there is no profit in it. The tests are costly and not always accurate. I've heard of people getting a negative test result, then continuing to consume gluten, then several years later ending up with even more problems related to celiac and getting hospitalized with complications. What is it, you can get a false negative, but not a false positive? ??????

<{POST_SNAPBACK}>

[drewsant]

I've been gluten-free for about a month now, and so much better. My primary problem was diarrhea, which is all but gone now, after having it for years, practically non-stop. I had blood tests that came back on Wednesday, so I went to the Dr, and he said they came back negative, but he said he still thinks I have it because of the drastic improvement of symptoms. He also feels the blood tests are not always very accurate. Also, I ate a chicken whopper a week ago, and got really sick the next day. I think, as well as my Dr, that that response proves the diagnosis. He didn't want to put me through the expense or time to have the biopsy-wouldn't do any good at this point anyway, because I've been gluten-free for a while now. But I know if I ever need to prove it, he will give me a statement saying I have it.

I'm fine without a test telling me I have it.

[GAJulie]

I would suggest that anyone who suspects they may have Celiac disease, get the tests. Not only for yourself, but for your immediate family. I was recently diagnosed and have a daughter who is pregnant. A new study suggests that "if" she were a celiac, she would want to breast feed the baby differently (longer before introducing gluten). My son has had mouth sores for a long time and "if" he knows there is a possibility that they related to Celiac disease, he can give that information to his physician. If I hadn't been diagnosed, my family members, including sister and brother and nieces and nephews, would be in the dark longer and not be diagnosed. Now they at least have a heads up when they start displaying symptoms of Celiac disease. So, do it for your family!

[kareng]

I would suggest that anyone who suspects they may have Celiac disease, get the tests. Not only for yourself, but for your immediate family. I was recently diagnosed and have a daughter who is pregnant. A new study suggests that "if" she were a celiac, she would want to breast feed the baby differently (longer before introducing gluten). My son has had mouth sores for a long time and "if" he knows there is a possibility that they related to Celiac disease, he can give that information to his physician. If I hadn't been diagnosed, my family members, including sister and brother and nieces and nephews, would be in the dark longer and not be diagnosed. Now they at least have a heads up when they start displaying symptoms of Celiac disease. So, do it for your family!

FYI- you are replying to an 8 year old post. Probably won't get a response from them.