Endoscopy.

[MySuicidalTurtle]

My Mother is having one soon because her gastroenterologist wants to take a biopsy of her small intestine to test for Celiac Disease. He is not sure she has it but my brother and I are Celiacs. I have not met him but he has not told her to eat gluten before her test knowing that she is gluten-free and has been for a year and a half. I wouldn't tell my Mother to eat gluten but if I remember she needs to for the test. She doesn't want to eat gluten because she will get sick and he hasn't told her she needs to. So, what does she need to do? If anyone has any articles about her needing to eat gluten pre-biopsy please share them! Thank you.

[olalisa]

Turtle, this quote comes directly from this site. Go to the site index, then click on the section about testing and diagnosis and there's lots of good info. This comes from Dr. Peter Green.

"What about the patient who seeks a diagnosis, but has already eliminated gluten from the diet? It is very difficult for many patients to go back on a gluten-containing diet to secure a biopsy-proven diagnosis. This can often take three to six months or longer. Columbia-Presbyterian has been talking about setting up alternative means of securing a diagnosis, such as a rectal challenge. The physician can take a biopsy of rectal tissue, and then instill gliadin extract into the rectum and do a repeat biopsy a certain number of hours afterward to demonstrate an inflammatory response similar to that in the small bowel. However, interpreting the results of the gluten challenge would require a pathologist who is very experienced, and sophisticated immunology on the cells of the rectal biopsy may be needed."

So from this, I gather that for the small intestine biopsy to diagnose celiac, she needs to be on gluten for some time. Maybe the doctor can come up with some other way to diagnose. I know many on this site use enterolab, which does stool testing. I don't have any experience with this lab personally, but maybe someone who does will weigh in.

Good luck!

[MySuicidalTurtle]

Thank you very much, Olalisa.

[olalisa]

Keep us posted on your mom

[Judyin Philly]

thanks for the thread.

i'm to have the scope in 2 month and want to have info in hand when i go for consult with me GI.

I've been gluten-free for 18 months and WILL NOT do a gluten challange for anyone..

hugs and luck to your mom. Judy

[rez]

Yes. For sure she needs to do a gluten challenge if she wants a Celiac diagnosis by biopsy. They will not find Celiac, or very unlikely, after being gluten free for a year and a half. If they're using it to rule out other conditions, then that's a different story.

[happygirl]

This is not the full answer, but the relevant part, from Dr. Peter Green's website (Columbia University)

Q: How is celiac disease diagnosed?

The gold standard for diagnosis is the small intestinal biopsy, done during a procedure called endoscopy. The diagnosis is based on finding a series of abnormalities in an intestinal biopsy (increased inflammation and villous atrophy) that return toward normal on a gluten-free diet. As a follow up biopsy is not always necessary or performed, the combination of an abnormal biopsy and improvement of symptoms after gluten is eliminated from the diet is enough to establish the diagnosis. Blood tests that indicate higher than normal levels of specific antibodies are also used to support the diagnosis, but positive antibodies are not required to make the diagnosis.

A gluten-free diet should not be started until all diagnostic tests are completed, as the withdrawal of gluten can change test results.

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So, this would apply to your mother's situation; that the removal of gluten would change the test results. I think that is a tough one: What is the point of doing a biopsy if he knows she gets sick eating gluten?

A good analogy:

An undiagnosed diabetic (or, a diabetic who knows it and doesn't manage their diet) has high blood sugar levels when they test their levels. When they get it under control, they re-test, and their levels are normal. It doesn't mean they don't have diabetes, it means it is well-controlled.

The same applies for Celiacs. When it is under control by a strict gluten free diet, and they are tested AFTER going gluten free, it doesn't mean they don't have Celiac, it means it is well-controlled.

I am sure ythat you know all this, but I just thought this example might help when dealing with your mom and her doctor. Has she had the bloodwork done? What is the point of "knowing" she has Celiac, if she knows she does better on a gluten free diet? (I have had multiple doctors who wanted to do a gluten challenge ... around 5 or so!, and the answer is always no; because like your mom, I would be too sick to try it.)

[Ursa Major]

Looking at it from a different angle: Your mother went on the gluten-free diet, it made her feel better, her intestines are now healed (or much better, anyway). Gluten will make her sick.

The doctor might decide she needs to do a 'gluten challenge', to prove she has celiac disease by a biopsy. What does that mean? It means, many GI doctors tell their patients who's villi have regenerated, and who now are actually absorbing vital nutrients, to purposely destroy those villi again, risking possibly life threatening illness, anemia, osteoporosis, cancer, diabetes, severe depression and other things, just so he can tell you what you already know, that gluten makes you ill?

No doctor would tell a diabetes patient to purposely eat lots of sugar and starches, to test if they REALLY have diabetes, by checking if they would really get deathly ill. No doctor in his right mind would do that, the outcry would be great, and the patient would refuse anyway. Plus, the doctor would likely be sued for malpractice and lose his license.

Why is it that GI doctors can get away with telling patients to purposely make themselves ill again for months? Something seriously needs to change.

I haven't had a biopsy. I know what gluten does to me, and I have absolutely no intentions of letting any doctor bully me into ever purposely eating it again. In fact, I don't care what they say, and if they think I am making it up. I know what I know. It's my body, and it's my business what I eat.

[mamabear]

My Mother is having one soon because her gastroenterologist wants to take a biopsy of her small intestine to test for Celiac Disease. He is not sure she has it but my brother and I are Celiacs. I have not met him but he has not told her to eat gluten before her test knowing that she is gluten-free and has been for a year and a half. I wouldn't tell my Mother to eat gluten but if I remember she needs to for the test. She doesn't want to eat gluten because she will get sick and he hasn't told her she needs to. So, what does she need to do? If anyone has any articles about her needing to eat gluten pre-biopsy please share them! Thank you.

There is a technical review article from the American Gastroenterological Association Institute from Gastroenterology Journal in November 2006 that states 4 weeks is the average time it takes to challenge with gluten. They say it may also take months to years to do the damage again. It's website is www.gastrojournal.org and follow the links to previous publications, then AGA Institute review articles. These should be available to non MD's, but I'm not positive about that. Hope this gives a clue.

[MySuicidalTurtle]

Thank you all so much and for the quotes and links. My Mom isn't going to eat gluten because she knows how much better she feels without it. She will have to ask her doctor what he is doing as far as the test is concerned and can now go in knowing more than she did. Thank you, again.