If You Had Neg Blood, Did You Have An Endoscopy?

[erin24]

Question:

Who had negative blood work but still went on to have a biopsy through an endoscopy and that come back positive? Or, did most of you just say "forget it" after the blood work and go on the gluten-free diet and not have the endo done?

I had negative blood but my dr said he wanted to do an endo. I have it thursday and I was wondering if it is likely to come back positive.

[Guest jhmom]

Hi Erin,

I had negative bloodwork and 2 negative biopsies if you count "patchy inflammation" as negative and of course my Gastro doc would not dx me and kept telling me it must be a severe case of IBS. I knew that was a load of bull and I decided to do some research on my own. I was eventually Dx thru Enterolab and began the gluten-free diet. I could tell a difference within 3 days! I was so excited but then I never got back to 100% and was finally dx with Lupus last year and found out that is attacks my GI tract. My rhuemy put me on an immune- suppressant med called Imuran and no more diarrhea!!! The very next morning I did not have to take Immodium as I had to do every morning for 3 months prior.

In my opinion it is less invasive and cheaper to try the gluten-free diet and that will let you know for sure if you are gluten sensitive or not as the blood test and biopsy are not always accurate.

I hope you get some answers and feel better soon!

[slpinsd]

My blood work was only slightly positive (Elevated AGA IgG), and my doctor did both an endo and colonoscopy. The bio came back negative, but she says she is surprised b/c she has pictures of damage (but also says she can't clearly diagnose me with Celiac). I'm waiting for a second opinion on the biopsy itself.

I'm glad I did the biopsy-even though it was inconclusive. I'm in the minority here- if a dr. is offering to do a biopsy, and you have insurance, I say do it!! In my opinion, it is not 'invasive' at all. The docs do it all the time, so there is no room for embarrassment. It doesn't hurt, there was no pain, you are somewhat sedated and might not even remember. The only thing I could have definitely passed on was the prep for the colono. it's nasty.

I was lucky and had my endo scheduled for 3 days after my appt- if you have to wait a long time and are sick then you may want to go gluten-free. Figure that it's only one time, and it is over with.

[Aquina1300]

Hello erin

My sixteen month old nephew had negative blood results and a positive biopsy.

-Aquina

[Felidae]

My blood tests were negative, so I went gluten-free just to try it. My doctor said the endo. might be negative anyways so she didn't recommend eating gluten again just to get the endo. done. It would have been nice to have a diagnosis, but I am so much healthier, I shouldn't really have any regrets.

Also, my grandmother probably had celiac. My mother also probably has celiac, or at least her symptoms point in that direction.

[ravenwoodglass]

Question:

Who had negative blood work but still went on to have a biopsy through an endoscopy and that come back positive? Or, did most of you just say "forget it" after the blood work and go on the gluten-free diet and not have the endo done?

I had negative blood but my dr said he wanted to do an endo. I have it thursday and I was wondering if it is likely to come back positive.

I had done a elimination diet under the guidance of an allergist. When I had a strong reccurance of symptoms with the addition of wheat I was referred to a GI. He told me to start eating gluten again and scheduled me for the endo a few days later. I became so ill that I could not make it to the appointment. The GI then officially diagnosed me celiac. Interestingly my DD and DS both showed positive on blood work, I don't. She had the endo which showed preceliac changes, He was diagnosed by dietary response alone with postive blood, he has much stronger symptoms than she does.

[erin24]

Hello erin

My sixteen month old nephew had negative blood results and a positive biopsy.

-Aquina

Was you nephew gluten-free before the blood test or endo?

[Aquina1300]

Hello Erin

No. My nephew was not gluten free before the blood test or endo. The Dr told my sister to eat normally until he was officially diagnosed.

-Aquina

[erin24]

Hello Erin

No. My nephew was not gluten free before the blood test or endo. The Dr told my sister to eat normally until he was officially diagnosed.

-Aquina

Thanks for the info. That gives me a little hope since I was not gluten-free for the blood test which came back negative. Maybe the biopsy will be positive b/c I would like a conclusive diagnosis. Anyway, I guess we'll see.

[Smitten]

Was you nephew gluten-free before the blood test or endo?

My blood test came back negative and my biopsy showed blunt villi. I would go through the biopsy. It was a piece of cake. I'm so glad I did it. I have 5 immediate family members that have celiac and that's why I went through with it. I also had symptoms so I wanted to make sure.

Shelly

[erin24]

My blood test came back negative and my biopsy showed blunt villi. I would go through the biopsy. It was a piece of cake. I'm so glad I did it. I have 5 immediate family members that have celiac and that's why I went through with it. I also had symptoms so I wanted to make sure.

Shelly

Wow, thanks Shelly. I have the endoscopy scheduled for this thursday. Did your dr persue the endoscopy or did you push for it? Were you awake for it?

So, you are officially dx'd even though the blood test was negative, right? I am assuming you are now gluten free...have you started feeling better? How long did it take you to feel better? Also, if you don't mind me asking...what were some of your main symptoms?

[Rusla]

I had negative blood but positive skin biopsy.

[Smitten]

Well, I'm still in the process of getting dx'd. My doctor actually called a Celiac Specialist at Mayo clinic to see what my next step should be. I'm seeing a dematologist next week for the scaley, itchy patches on my legs. Also, he wants me to get a gene test. I am not gluten free yet.

My symtoms are bouts of diarrhea, patches on my legs, hypothyroidism, anxiety and I have 5 immediate family members with celiac. Mom, sister, niece, Uncle & cousin.

I really didn't have to push for the endo....he just suggested doing it. My big question is can blunt villi mean something else other than celiac? If not, I guess I have it. It was so easy. I was not awake and felt fine afterwards. The hardest part for me was not being able to drink anything 4 hours prior to the procedure. It was at 1:00 p.m.

Good Luck on Thursday! You will do just fine )