This Nurse Was Full Of It, Right?

[julandjo]

Background: I had my biopsy done a year ago. At the time I had been gluten free for 3 months already, and my life had improved immensely. Results were: villous blunting and atrophy. So then my GI told me to eat a ton of gluten for 2 weeks so I could do the blood test (if only I'd known what a farce 2 weeks was!). Of course it was negative, so the GI very reluctantly told me I "might" have celiac disease. It's irrelevant; gluten makes me want to die.

The reason I got tested was for my kids - both have been extremely sensitive to gluten since birth, and even a single bite for my son, or CC for my daughter, results in extreme behavior changes, rash, screaming, snot, etc. etc. So they've effectively been gluten free their entire lives. Well my 4 year old is having a lot of tummy troubles, and had an endoscopy/colonoscopy to check for eosinophils. His pedi GI doctor requested the slides of MY biopsy so he could compare us and try to come up with an answer for why we both react to so many foods. This pleased me to no end, to have a doctor finally agree that whatever we have going on is genetic and to look at the whole picture.

Well. His nurse called with the results. The great news is neither of us had any eosinophils, and my son has no evidence of Celiac. I reminded her that he is gluten free, so of course he would have no evidence. She said that even if a Celiac is 100% gluten free, they will still have Celiac cells on biopsy. Huh?! Then she went over MY slides and said that there was villous damage, but not Celiac. Again, huh?! Aren't they one and the same? I told her that I had already been gluten-free for 3 months at the time, and she said it's possible I have gluten sensitivity, but not Celiac.

Someone, explain this for me! The end result is the same: the 3 of us cannot tolerate any gluten. But still, what she said flies in the face of everything I've understood about celiac disease!

[mushroom]

The nurse is ignorant. The biopsy does not show "celiac cells"!! It shows damage caused by celiac disease. She does not know what she is talking about.

[kareng]

Are you sure you were talking to a nurse, not the order taker at Dominos Pizza?

I would insist on speaking with the doctor. Call back and tell them you can be home between 1-5 or whatever for him to call you to discuss the results & what to do next. Some docs around here seem to have a set time they call back, usually 5-7 pm. My parents doc said his varies to as late as 9 if his daughter has a soccer game.

[Skylark]

Huh? I would ask them to explain exactly what caused your villous blunting, damage, and severe gluten sensitivity if it's not celiac. You should get an interesting reply.

Of course your son has a normal biopsy if he's been gluten-free his entire life.

[SAVANNAH21]

Huh? I would ask them to explain exactly what caused your villous blunting, damage, and severe gluten sensitivity if it's not celiac. You should get an interesting reply.

Of course your son has a normal biopsy if he's been gluten-free his entire life.

Maybe I saw the same person as you. I actually thought I was seeing a GI doctor and when I went I saw a CNP. My biopsy(which was ordered by my family doc and performed by a general surgeon in my area) showed blunted villi but my blood work was negative so my family doc said I didn't have celiac because of the blood work. I requested a second opinion with a GI doc and that is where I saw the CNP. She said she didn't think I had Celiac but maybe a gluten intolerence. HUH!! What about my blunted villi, what causes it. I'm not sure at this point if I'll get another opinion now but I am on a gluten free diet and feeling absolutely wonderful.

[Skylark]

"Cow's milk protein sensitive enteropathy (CMSE), viral or bacterial infections, medications (especially aspirin like arthritis medications e.g. ibuprofen etc), autoimmune enteropathy, Helicobacter pylori infection (the stomach ulcer bacteria), AIDs, common variable immunodeficiency, and lymphoma of the intestine are all possible causes of small intestine changes that may mimic celiac. However, if you have classic celiac type symptoms, a positive celiac specific antibody (anti-endomysial antibody or tissue transglutaminase antibody) and a positive response to a gluten free diet then celiac is the likely cause."

This is from an Ezine article by Dr. Scot Lewey that I apparently can't link to. It's article number 315570.

That's why I was saying julandjo should ask about the combination of villous blunting AND gluten intolerance. Villous blunting alone isn't always celiac.

[mommida]

A strict allergen free diet can work wonders. You should have seen my daughter's scope pictures when she was diagnosed with EE compared to her follow up. The doctor was amazed and said if he didn't know she was on the restricted diet he would have had to "undiagnose" her. This is one of the BEST doctors in the area. He now has a great respect for parents who follow allergen free diets and knows it is possible to avoid gluten like the plague.

Her esophagus and small intestine looked completely NORMAL her last scope in December 2009 so it looks like her EE is flared by airborn allergens that come with the dryness of late hot summer in the midwest.

[nora-n]

Maybe ask her to show you "celiac cells" in a medical textbook??? There should be numerous images of them in textbooks! if they existed.

I wish there was something as simple as "celiac cells"!

If they would have bothered to order the IgG versions of the ttg or whatever tests they ordered, they might still have been positive. IgG type antibodies tend to hang around a lot longer. The blood draw should have had a note that the patient had been gluten free for three months.