Tested Negative But Still Have All The Symptoms, Help!

[flutrqueen]

Last week it was discovered that my brother is positive for Celiac. Having all the same symptoms, my mom urged me to get tested too. I received the results from the blood test today and they are negative. I'm happy (because I didn't want to have the restricted diet), but also confused and frustrated because I still have all the symptoms (gas, bloating, diarreah, stomach ulcer). My stomach is constantly upset, and I have an itchy rash all over my legs and arms. I'm scheduled to get a test for DH tomorrow by my dermatologist, but in the meantime my mom thinks I should still try a gluten-free diet.

HOWEVER, as you all know, that is a very hard thing to do and I don't want to do it if I don't have to. Is there a possibility that the blood test could have been inaccurate? Have any of you tested negative and later tested positive? Any advice anyone could give me would be EXTREMELY helpful.

Thank you,

Brooke

[kbtoyssni]

Blood tests and scopes are notorious for false negatives. To get a positive from either test you need to have a lot of damage. So until you've done all that damage to your intestines and the rest of your body, you won't test positive. I tested negative but knew I had an issue with gluten from an elimination diet. I decided to go gluten-free right away - there's no way I was going to ignore what I knew was making me sick. I couldn't wait to get better.

I think you should try the diet, too. It's very difficult at first and there is a huge learning curve, but after a few months you'll have it down. And in my opinion, giving up gluten is a small price to pay to live a healthy life free of all my debilitating symptoms.

[dsaltzm]

Has your doctor taken a biopsy of your duodenum? All of my tests came back negative for Celiac but my doctor decided to take a biopsy of my duodenum during an endoscopy on a whim and that was how I got diagnosed. I have been on a gluten free diet for 1 month now and feel 99% better.

I'd try the gluten free diet. But before you start I would have your doctor take the biopsy and see what he finds.

Thats my two sense... GOOD LUCK!

[cyberprof]

Hi Brooke, If your brother (first-degree blood relative) is a diagnosed celiac, I would push your doc for an endoscopy if you want a diagnosis. However, even if that is negative, try the diet. I had negative blood tests, positive biopsy so that may happen to you. Or you just might not have enough damage yet to show positive. If you read people's stories here, waiting and eating gluten until you're really sick doesn't sound like a lot of fun. Medical science is not very good vis-a-vis celiac detection - dietary response is key.

~Laura

[NemesisChick]

Hey- did you test negative for the TTG also? Because I did and Dr.Bavishi still wants a biopsy...this testing is making me so nervous...

[cyberprof]

  NemesisChick said:

Hey- did you test negative for the TTG also? Because I did and Dr.Bavishi still wants a biopsy...this testing is making me so nervous...

NChick,

Yes, I tested negative on TTG. I had the endoscopy first because my doc thought that my symptoms were an ulcer. The endo found no ulcer but the doc took biopsy samples while he was there (Thankfully!) and the diagnosis fit all my weird symptoms.

The endoscopy is not much to worry about. You can't eat or drink for 9-12 hours ahead of time. They give you an IV to relax you and the drugs they give you put you out so you don't remember the events but you are not really "asleep" like you would for a full surgery. You are only out for 20 minutes. I was able to wake up enough to put my clothes on, walk to the car. Went home and had lunch (wheat noodles!) and went to sleep til my kids got home from school. I had absolutely no aftereffects.

I feel ten times better now and have very few complaints after feeling rotten for over 2 years.

I hope it goes well for you. Let us know...!

~Laura