Should I push for an Endoscopy? Negative Blood Test...

[meg-c]

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!

[Pegleg84]

Hi Meg,

I was in a somewhat similar situation before I went gluten free: lost a bunch of weight very quickly (I was not overweight, so looking 10+lb in a month was alarming), felt like crud after eating anything, really bad anxiety, low vitamin levels/iron anemia, etc etc. I had blood tests done a couple times (once after my mom was diagnosed with Celiac, and later when my symptoms popped up) which were both negative (not sure if they ran the full panel, though). However, that didn't stop me from being pretty sure I had Celiac. The disease runs on both sides of my family (not sure if my dad had it, but a couple of his siblings do), and my sister also had negative blood tests but an endoscopy showed positive for villi damage. i got sick of being sick all the time and didn't want to wait for however long it would take to get an endoscopy done in a small city (and just before moving) so went gluten-free and never turned back. Given the improvement in my symptoms, I have always considered myself to have Celiac and no one can tell me otherwise. No way would I do a gluten challenge and ruin my health just to have a confirmed diagnosis.

All that to say: YES! You should push for an endoscopy. First, talk to your doctor about your symptoms and get the full blood panel redone (lots of posts here with the full rundown of what you should ask for). Tell them that there are AI disorders on both sides of your family (two positives make a negative? Still not sure how that works but probably what happened in me&my sister's case) and want to confirm with an endoscopy regardless of the blood results. Keep enjoying your glutens until then.
You should also get your vitamin/mineral levels checked, because low levels + the sudden weight loss, fatigue, etc definitely sounds like a malabsorption issue. Also, it'll let you know how much to supplement (and if you are Celiac, you'll need extra supplementation for quite a while to bring them back to normal)

So, go see your doctor armed with all the info you can get, and good luck!

[Victoria1234]

Personally I would do the blood test first. It's far cheaper and easier. You need to have the full celiac panel done... I'm sure someone else will pipe in exactly what that is. Even though you had part of the blood panel done years ago doesn't mean your results will be the same. And a complete panel will tell you the complete picture.

[TexasJen]

I think you have 3 questions:

1. Why am I losing weight?

2. What is the cause of the anemia?

3. Do I have celiac?

Since your symptoms are new and there is a high suspicion for celiac, you should have a repeated blood test for celiac with the full panel. Anti - TTG - IgA and IgG, deaminated gliadin - IgA and IgG, endomysial antibodies. (You don't need to repeat the IgA test because you know you are not IgA deficient)

But, normally, unless you have extremely heavy periods, you would also have a scope to evaluate the anemia - usually including a colonoscopy. 

The weight loss could be all related but if the above tests are normal - no celiac, no IBD, ulcers, etc then you would get more tests to look into the cause of the weight loss.

[meg-c]

1 hour ago, Pegleg84 said:

Hi Meg,

I was in a somewhat similar situation before I went gluten free: lost a bunch of weight very quickly (I was not overweight, so looking 10+lb in a month was alarming), felt like crud after eating anything, really bad anxiety, low vitamin levels/iron anemia, etc etc. I had blood tests done a couple times (once after my mom was diagnosed with Celiac, and later when my symptoms popped up) which were both negative (not sure if they ran the full panel, though). However, that didn't stop me from being pretty sure I had Celiac. The disease runs on both sides of my family (not sure if my dad had it, but a couple of his siblings do), and my sister also had negative blood tests but an endoscopy showed positive for villi damage. i got sick of being sick all the time and didn't want to wait for however long it would take to get an endoscopy done in a small city (and just before moving) so went gluten-free and never turned back. Given the improvement in my symptoms, I have always considered myself to have Celiac and no one can tell me otherwise. No way would I do a gluten challenge and ruin my health just to have a confirmed diagnosis.

All that to say: YES! You should push for an endoscopy. First, talk to your doctor about your symptoms and get the full blood panel redone (lots of posts here with the full rundown of what you should ask for). Tell them that there are AI disorders on both sides of your family (two positives make a negative? Still not sure how that works but probably what happened in me&my sister's case) and want to confirm with an endoscopy regardless of the blood results. Keep enjoying your glutens until then.
You should also get your vitamin/mineral levels checked, because low levels + the sudden weight loss, fatigue, etc definitely sounds like a malabsorption issue. Also, it'll let you know how much to supplement (and if you are Celiac, you'll need extra supplementation for quite a while to bring them back to normal)

So, go see your doctor armed with all the info you can get, and good luck!

Thank you so much for this reply, I'm happy to hear that you're doing so much better now. 

I definitely agree that it sounds like some kind of malabsorption problem -- I will probably send a note to one of my doctors asking if he can add it to the list of blood work I am due to have in a few weeks. No harm in asking. 

[meg-c]

1 hour ago, TexasJen said:

I think you have 3 questions:

1. Why am I losing weight?

2. What is the cause of the anemia?

3. Do I have celiac?

Since your symptoms are new and there is a high suspicion for celiac, you should have a repeated blood test for celiac with the full panel. Anti - TTG - IgA and IgG, deaminated gliadin - IgA and IgG, endomysial antibodies. (You don't need to repeat the IgA test because you know you are not IgA deficient)

But, normally, unless you have extremely heavy periods, you would also have a scope to evaluate the anemia - usually including a colonoscopy. 

The weight loss could be all related but if the above tests are normal - no celiac, no IBD, ulcers, etc then you would get more tests to look into the cause of the weight loss.

Yeah, you're right. 

The weight loss has thankfully been fairly stable the past couple of months, especially now that I am at a healthy weight. It's often hard to get the doctors to be receptive, as they were almost "happy" I was losing weight, you know? I was 230 pounds, I now hover somewhere around 155-160 pounds (at 5'10"). 

I wouldn't consider my periods to be especially heavy, although doctors are quick to blame that i a young female patient. I had my ferritin checked awhile ago, and it was 11 -- no action was taken as it was just within normal range and my CBC was normal. I had a repeat CBC months later and my hemoglobin, hematocrit, along with others fell outside of range. I did ask my PCP if my numbers weren't improved with three months of supplementation if we'd further investigate GI causes. Shs agreed to that. I am due to have a repeat CBC and full iron panel in the next few weeks. 

I've had so many labs and workups done regarding the weight loss, I'm starting to feel like a crazy person! Many of my doctor's want to blame a psychological condition (anxiety, depression, eating disorder, etc), 

 

Thank you for your reply!