I Finallly Went To The New Gi Dr.

[Guest AutumnE]

He agreed not to do a gluten tolerance test on me and is awaiting my results from enterolab. If it shows any kind of positive response either the antibody or gene test he is wanting to do a biopsy on me.

He is in suppourt of the genetic testing versus the gold standard and said even if the biopsy came back fine that I should still stay on the diet and be observed for absorption problems.

Yeah! I never expected today to go as well as it did. Finally someone in my corner

I'm on wait for enterolab kits for me and my daughter and Im excited to have some answers. Before I thought I didnt care if I had testing for the gene part of it but it will be nice to have it in black and white.

I also found out my regular dr's blood test results on my vitamin levels and anemia tests came back fine.

[CarlaB]

I can't remember, are you gluten-free? If you are, there's probably no sense in doing the biopsy. Glad you finally have a supportive doc!

[Guest AutumnE]

Yeah I am gluten free, since right before I joined here so around the end of may. The biopsy I have a feeling will show up with no damage but I would like to know if Im healed from it. It will help be a factor in my decision when I want to start ttc again. I do get glutened on a regular basis on accident though. Twice this week so far! I eat the dinner sometimes my mom brings over for me and have paid for it once in a while. I have no clue how with brand new ingredients and clean washed hands but she does. She does try hard though. My sciatica is gone though when I have the big D so I wonder if it is somewhat healed since it use to shoot down my lower back and thighs.

[CarlaB]

Yea, should look good by now! I just wanted to be sure that if you were gluten-free that you knew it would most likely come back negative. But, even a negative test just means they didn't find damage, doesn't mean damage isn't there.

I'm happy you have a doc who's willing to work with you.

[Guest AutumnE]

Yea, should look good by now! I just wanted to be sure that if you were gluten-free that you knew it would most likely come back negative. But, even a negative test just means they didn't find damage, doesn't mean damage isn't there.

I'm happy you have a doc who's willing to work with you.

So the damage might not show up? Does it have to be extensive to show? Ugh I was hoping it would be helpful!

[CarlaB]

Biopsies can prove you have celiac, but they cannot rule it out.

They take several biopsies, but damage is not uniform, so it's entirely possible for them to take biopsies, and not get any damage at all even if there is severe damage. If you've been gluten-free for almost six months, much of your damage should be healed. I'd be surprised if they found anything. I wouldn't personally go on a gluten challenge to damage the intestine so that I could see I had it. I did that for six weeks. It should have been three to four months. I was miserable the whole time, couldn't drive much of the time because the brain fog was so bad, then my biopsy was negative anyway. I never would have done it for three or four months.

Penguin did a gluten challenge for that length of time, her biopsy was negative, she was sick the whole time (gained 30 pounds) and now has a thread here saying that now she also is allergic to gluten when she touches is, probably as a result of her gluten challenge.

So, if you're having the biopsy to show yourself that your damage, if you ever had it, is healed, that's all it would show at this point.

[Guest AutumnE]

Thanks Carla for the quick response

I suspect its fine too with my vitamin panel coming back ok. I told him today I would not do a gluten challenge for him, its become so bad that the seizures and dizziness are horrible if I just get cc. I didnt originally want to do the biopsy but he is pushing it to make sure I'm fine not necessarily for just a diagnosis.

I'm not very good at standing up for myself and being assertive. Besides if the antibody comes up negative I dont think my insurance would pay for the scope and biopsy anyways so it may be a non issue.

[CarlaB]

My blood test was negative, and the insurance still covered my biopsy -- both a colonoscopy and endoscopy. If you know gluten is your problem, and there's no other area of concern, I'd skip the invasive tests. Honestly, both of my parents have had cancer, I wanted to have the tests to be sure I was "clean."

[Guest AutumnE]

Well I wonder if I should do it then too for that reason. Cancer runs very strongly in my family 4 family members with breast cancer. Two with ovarian cancer. One with colon cancer. And 1 with stomach cancer although originally it was concluded by dr.'s to be caused by alcohol and cigarettes, who knows though since it is the side celiac disease runs on. I have never had a scope except one for reflux years ago. My mom and dad were here tonight and said I shouldnt go through with it. They dont want to see me go through anything more than I have to.

I'll have to think on this one