Endoscopy Without Blood Test?

[MJ-S]

I've been trying to convince my mom to get a Celiac blood test since I discovered my own gluten intolerance this year and learned about Celiac disease. She's had a lifetime of fatigue, low energy and mood, iron deficiency, food allergies and sensitivities, lactose intolerance, bloating, gas, reflux, facial tics, sleep issues, etc. She's been resisting, so it's a work in progress.

Without telling me she was going to do it, she went to her doctor a few weeks ago and had blood tests run because of her worsening fatigue. They found low B12, but didn't test for Celiac. She didn't mention the stomach issues (which she's convinced are just normal for her), or my own gluten intolerance. When I found out, I told her she should have told the doctor about it.

She's terrified the doctor may actually test her and find a positive result, which is why she didn't mention it. She also swears that bread doesn't make her sick (she's addicted to it), and I'm having a hard time convincing her that the effects are not always obvious/immediate after you eat gluten. She also says if she had celiac she'd be dead by now (she's 68) and again, I'm having trouble convincing her that not everyone gets deathly ill by age X with the same symptoms. Part of the problem is that she has a friend with Celiac who was extremely sick before she was diagnosed, so she thinks everyone has to be the same. We're having a lot of teaching moments, but I'm not sure how much she's listening.

So last week, also without letting me know, she went to a new GI specialist, this time for an ongoing hemorrhoid problem. She also goes to the bathroom several times a day, and is concerned about the frequency. So this time she mentioned the gas/reflux issues and told him I have Celiac (I'm not exactly diagnosed, but it got his attention).

He perked right up when he heard this, and in addition to scheduling her for a colonoscopy, he added an endoscopy. She's having it all done on Wednesday.

He told her that the chances of another family member having Celiac is 20% - is this an accurate number?

I'm concerned because he didn't run a blood panel. If the biopsy is positive, we'll know. But it it's negative, I'll never get her to ask for a blood test now. I wish he had ordered the blood test before running the endoscopy (that's what my GI doc did).

Is this common? Ok? What to do with a negative biopsy result now, when I want her to get this thoroughly checked out. I suppose no need to worry until AFTER the results come in, but I did want your opinions on this.

[Jenniferxgfx]

If she's eating that much gluten, I think the endoscopy will be more useful than blood tests. That said, she/you should know a negative biopsy doesnt mean no celiac or gluten intolerance. a gluten-free diet could still help her.

[Skylark]

20% is about right for relatives for celiac. It's much higher for gluten intolerance.

I imagine her GI doctor was going to do the colonoscopy and decided it was worthwhile to do the endoscopy as well. Villous damage is diagnostic, so if she comes up with that no blood work is necessary. If she comes back with a normal biopsy, I agree it's tricky.

[MJ-S]

Thanks for the responses!

They found stomach polyps (a lot of them) and diverticulosis. Biopsy results are not in yet, so we wait.

[Marilyn R]

Thanks for the responses!

They found stomach polyps (a lot of them) and diverticulosis. Biopsy results are not in yet, so we wait.

It seems weird that the Gastro didn't send her to a lab for a Celiac Panel. Not being cynical or anything, but if he had a plebotomist in his office, I'm sure he would have ordered the blood test.

It it helps, tell your mom that sombody's (internet buddy?) mother died at 87 with celiac disease. Her cause of death was not celiac disease, but her quality of life was greatly diminished by not sticking to the diet. Mom's great aunt died at 97 this month. My great great aunt was in assisted living, not a nursing home like Mom had been in for years.

As much as it hurts, if your mom chooses to continue eating gluten, you can't do anything about it. She won't accept role reversal, you cannot be her mother. It's tough, makes you want to pull your hair out, but it's something you may have to deal with.

If your Mom has signed you off on the HIPA paperwork, it may be helpful to talk with the doctor's office regarding advice for your mom. She's more likely to listen to a medical assistant or doctor than take advice from her daughter.

Good luck! May the force be with you!