Negative Blood Tests -- Should I Pursue Further Testing?

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Regular Member

Date Joined Feb 2015
Total Posts : 63
   Posted 8/29/2017 5:13 PM (GMT -6)   
Hi, everyone. I haven't been diagnosed with Celiac disease, so I hope it's okay for me to post here.

I'm a 21-year-old female who has been struggling with some chronic symptoms for about a year now.

Out of nowhere, I started losing weight. To date, I've lost upwards of 70 pounds. I was very much overweight beforehand, and I'm now hovering at a healthy weight. The weight has seemed to plateau somewhat recently, though. I was overweight my entire life, losing weight was never easy for me... even as an athlete. I'm now very sedentary. Along with the weight loss, I'm always super tired, I've lost lots of weight, have crazy dry skin/rash between my fingers, etc. I have occasion GI problems (intermittent diarrhea and constipation), sometimes floating stools. However, the never really cause me a huge inconvenience, just a difference I've noticed in my own habits. I also do not have any worthwhile stomach pain, cramps, or vomiting.

I've never had any of my vitamin/minerals checked, but I do know that I am anemic. I have a very low ferritin (11 on last check, but that was a long time ago) along with a low hemoglobin, hematocrit, etc. I've been treating with an oral multivitamin with iron and I'm due to have levels rechecked soon.

I had a blood test for Celiac disease preformed a long time ago. It checked both my tTG IgA and total IgA -- both were within range. I was eating gluten at the time (and I still am, no plans to stop unless I receive a proper diagnosis).

It may also be worth noting that both my parents have autoimmune diseases. My father had T1 diabetes and my mother had transient Graves' disease. I know that autoimmune diseases can be more likely to run in families.

Anyways. Should I push my doctor for a scope to rule out Celiac disease once and for all? Should I only request a scope if my anemia hasn't improved on iron?

Any thoughts, suggestions, recommendations, or similar experiences would be greatly appreciated.

Thank you!

Regular Member

Date Joined Aug 2015
Total Posts : 211
   Posted 8/29/2017 5:46 PM (GMT -6)   
Consider asking your doctor for the rest of the celiac blood panel (EMA and DGP). Why? Not all celiacs test positive to the TTG (like me). Another issue is that some 10% of celiacs are seronegative. Learn more about testing at the Universtiy of Chicago's celiac website. There are other celiac centers, but this one is well put together.

This algorithm by the Mayo Clinc is pretty handy:

I was anemic. If I went off iron supplements, my ferritin would drop. Find out the root cause!

Forum Moderator

Date Joined May 2014
Total Posts : 34571
   Posted 8/30/2017 3:49 AM (GMT -6)   
My son was anemic - hemoglobin very low and also ferritin very low - for years...with iron supplementation we were able to get his hemoglobin levels up, but not the ferritin - even with daily supplementation.

No one thought to test him for Celiac. Then one day, we saw a different Dr. and she had the Tissue Transglutanimase antibodies tested.

He was over the top level...where they don't count anymore (I can't remember if it was > 100 or > 200.

We chose not to have the biopsy of the small intestine done because the tests were enough.

After going gluten free, it took at least a year for his numbers to come down below the top level...and another year before they were low enough to be in range. His ferritin came up to in-range.

Now he just has periodic testing done. He got careless with his diet in high school...and sure enough, his antibodies rose...

For him, just the blood tests have been enough. But, if there's grey area, looking at the small intestine should be done.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
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Regular Member

Date Joined Oct 2017
Total Posts : 54
   Posted 10/4/2017 9:23 PM (GMT -6)   
Wow, you have gone through a lot
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