Blood Test Negative, But Believe I Have Celiac

[dbelleti]

Hi all,

I'm hoping to get input from some people experienced in dealing with celiac disease and diagnosis. I've struggled with debilitating cramping, constipation, abdominal pains, and fatigue since age thirteen. I've also had bouts of depression and anxiety, and I have some thyroid issues. I am currently 32, and in the past 19 years have had two colonoscopies and worked with gastroenterologists as well as tried alternative methods. Everything has been chalked up to IBS, and I've essentially learned to live with this.

My paternal grandmother has celiac disease, and my father has always struggled with debilitating stomach issues and has some mood issues. I recently realized I've never been tested for celiac and had a blood test, which my PCP says has come back showing no signs of celiac disease. However, I made the choice to try a gluten-free diet anyway, and immediately saw improvements in my mood and energy levels, and in my digestion. This was about three weeks ago.

Since then, things have been up and down. I am learning about cross-contamination and believe that some continued digestion, mood, and energy issues may be due to not keeping a close enough eye on the potential of cross-contaminating. I wonder where to go to next - I'd like to get a confirmation of diagnosis of celiac if I proceed, given the extreme high maintenance the disease requires regarding food monitoring, but it seems many people are forced to self-diagnose after having no luck with doctors.

Does anyone have any advice for me? Your expertise is appreciated.

- D

[Bubba's Mom]

About 20-30% of Celiacs test negative in their blood work. I am one of them.

I've had various symptoms that seemed to come and go for most of my life. A couple of years ago it hit my digestive system and didn't let up. I had an endoscope scheduled to see if it could be determined what was causing my extreme nausea, bloating, lack of appetite, upper right quadrant pain, and horrible gas. I was losing weight at a rapid pace too.

When the GI did the scope she said there was no question about the cause. My intestinal damage was severe. She said I had Celiac.

You can have Celiac and test negative in the blood work. You could also have Non-Celiac gluten intolerance? There's no test that shows that. You have to go 100% gluten-free to see if gluten is your problem. I suggest trying the diet for at least 3 months to give your system a chance to settle down. Be a label reader, try to eat mostly whole foods such as fruit and veggies, unprocessed meat, and seafood. It's a good idea to omit dairy at first too. See how you do? UNLESS..your symptoms are so severe that an endoscope should be done. You should continue to eat gluten until after a scope is done.

With a family history of Celiac, and a Dad that seems to have the symptoms, I think you'd be wise to try to find the cause of your symptoms?

A small intestine bacterial overgrowth (SIBO)can give symptoms very much like Celiac too, so it might be worth getting tested for that if the diet doesn't make you feel better?

[beachbirdie]

Hi all,

I'm hoping to get input from some people experienced in dealing with celiac disease and diagnosis. I've struggled with debilitating cramping, constipation, abdominal pains, and fatigue since age thirteen. I've also had bouts of depression and anxiety, and I have some thyroid issues. I am currently 32, and in the past 19 years have had two colonoscopies and worked with gastroenterologists as well as tried alternative methods. Everything has been chalked up to IBS, and I've essentially learned to live with this.

My paternal grandmother has celiac disease, and my father has always struggled with debilitating stomach issues and has some mood issues. I recently realized I've never been tested for celiac and had a blood test, which my PCP says has come back showing no signs of celiac disease. However, I made the choice to try a gluten-free diet anyway, and immediately saw improvements in my mood and energy levels, and in my digestion. This was about three weeks ago.

Since then, things have been up and down. I am learning about cross-contamination and believe that some continued digestion, mood, and energy issues may be due to not keeping a close enough eye on the potential of cross-contaminating. I wonder where to go to next - I'd like to get a confirmation of diagnosis of celiac if I proceed, given the extreme high maintenance the disease requires regarding food monitoring, but it seems many people are forced to self-diagnose after having no luck with doctors.

Does anyone have any advice for me? Your expertise is appreciated.

- D

My first suggestion is to get a copy of your test results, and read them for yourself. Find out what tests your doctor did, and what the numbers say. Doctors very often do not do a complete panel, and a lot of people "fall through the cracks".

If you post your results here, folks can help with interpretation.

You should have these tests:

Total Serum IgA

Deamidated Gliadin Peptides - both IgA and IgG versions (sometimes docs do anti-gliadin antibodies, AGA)

anti-endomysial antibodies (anti-) EMA

Tissue Transglutaminase (TtG)

If any of those are missing, you have incomplete testing. Especially considering you have a family history.

IBS weak diagnosis from loser docs. It means they can't figure out what's causing your distress, and they will use you as a lab-rat to test anti-spasmodics and other drugs to see if they can mask your symptoms without fixing the cause.

You can try a gluten-free diet, and some also feel good on gluten-free/dairy-free, and see what happens. You obviously had some improvements in a very quick time.

Unfortunately, for further testing to be accurate, YOU MUST KEEP EATING GLUTEN. Even three weeks off of it can skew your tests. I would wait now, get glutened up for 2 or 3 months, before doing more bloodwork.