Persistent iron deficiency--just got back from endoscopy

[ccole93]

Hello! I'm a 22 year old woman. I've been experiencing diarrhea and indigestion for a year now that came on quite suddenly. However, in that time, I gained 30 pounds!! I finally sucked it up and went to the GI doctor, who ordered an EGD and colonoscopy. 

I have also been anemic since about 13. I began birth control and changed my diet to incorporate iron, but still my Hgb was 9.6. It improved and went to 11.4, but dropped back down again. I am also vitamin D deficient. 

The prep was just not fun but I did it. I went in today, thankfully had Versed, and slept through most of the procedure (just woke up gagging on the EGD scope but a little extra Versed fixed that). 

The doctor said I had some flattening in my duodenum and some "bumps" near the end of my colon. (He also complimented me on how clean my colon was--how kind!) He said he wasn't really concerned and took quite a few biopsies just for safety's sake. He suspects celiac or Crohn's. 

Now that I have to wait two weeks for the actual results, I'm getting nervous. I've read that duodenal flattening is a big sign of celiac disease and is actually what inhibits iron absorption.

Could anyone who has gone through this give me some advice or support? I'm very much afraid of having celiac disease. I am friends with two girls with celiac disease and I am not at all fond of the gluten free food.

[Irene Joanne]

I felt the same as you- but honestly I've been baking some pretty fantastic gluten free foods- plus real food is gluten free:) I won't lie- it is hard.... But it gets easier and when you feel better you won't mind so much.  I just look around me at all the people with undiagnosed celiac or other health issues and I'm just so grateful to know what's wrong with me. 

By real food I mean fruit, vegetables, most meats. Join a support group- it's invaluable!

my nephew has celiac too and I hated his food- but so far I'm loving most of my stuff- I do think your taste buds change as well.

did you have blood work done as well? Make sure that gets done before you go gluten free. 

[ccole93]

24 minutes ago, Irene Joanne said:

I felt the same as you- but honestly I've been baking some pretty fantastic gluten free foods- plus real food is gluten free:) I won't lie- it is hard.... But it gets easier and when you feel better you won't mind so much.  I just look around me at all the people with undiagnosed celiac or other health issues and I'm just so grateful to know what's wrong with me. 

By real food I mean fruit, vegetables, most meats. Join a support group- it's invaluable!

my nephew has celiac too and I hated his food- but so far I'm loving most of my stuff- I do think your taste buds change as well.

did you have blood work done as well? Make sure that gets done before you go gluten free. 

Hey, thanks for your encouragement!! I guess I'll have to switch, anyway, if I don't want to keep being sick. 

No, I thought that was odd, too. I figured the doctor would do that before anything else. I'll see what he says about the endoscopy before I ask. 

[cyclinglady]

Then don't stop eating gluten until all testing is complete!  Otherwise the blood tests will be invalid.  

[ccole93]

My doctor called and said the biopsy looked good. He wants to do a barium test and a camera capsule to get a good look at my small intestine before doing blood tests. 

[Julieslife]

Hi ccole93,

I was browsing this forum for information and I cannot help but notice that we're having pretty similar experiences these days.

I'm a female student, born in 1993, that had an endoscopy this week. Additional quality #1: I am guilty of having gotten into the slightly creepy habit of checking my stools because they're the weirdest things.

I got diagnosed a couple of weeks ago as anemic with a hg of 6,6 at its lowest / ferritin of 3,4. I have deficiencies in B12 and vitamin D. I have been having a very weird experience where whenever I eat pasta I would get hungrier than if I did not. So in january after 2 weeks of extreme hunger (because my parents insisted strongly on eating enough carbs to gain some necessary weight) I threw most of them out and felt somewhat better. Untill february happened, I felt really weak and subscribed it to low carbs. I gave myself the opposite to try to fix it: lots and lots of pasta and bread and they just made me sicker. Before my GI doctor mentioned celiac on the 8th of march, I had never even thought about this possibility. Now my head is really seriously considering this. I ate gluten knowingly for 2 weeks before the endoscopy of the 22nd and on top of gastrointestinal issues, flatulence, muscle spasms I got: head aches, skin rashes and mouth wounds (? bad translation on my part). 

It is definitely no fun figuring these things out. I feel for you. But I just want to say that you and your doctor are on the road to the truth so hang on and things should get better soon! Will you discuss the endoscopy results irl with your doctor as well? When is the blood test planned for? I'm torn all the time between thinking: doctor X, just tell me what's going on, how can you not know it yet AND the very comforting thought that your doctor is trying his very hardest at helping you figure out what's wrong and helping you feel better. Which should bring you back to health. You're in my thoughts.

All the best from Europe

Julie

[cyclinglady]

How many biopsies were taken?  Did you know that the small intestine (when laid out flat) is the size of a tennis court?  It is easy to miss damaged areas per celiac experts like Dr. J. Murray and Dr. A. Fasano.  It's another reason why celiacs manage to go so long without a diagnosis.  Until is super severe, you are still able to absorb nutrients.   You should really get a copy of the lab report.  I would insist on a celiac blood test (golly, it is way cheaper and less invasive that the other tests he wants and I am not discounting those tests).   The other tests will help with a Crohn's diagnosis but they are not recommended for celiac disease.   I just do not understand that if the doctor suspects celiac disease, why he would NOT order the celiac disease blood panel.  That's the protocol for diagnosing celiac disease per the British, American, Canadian and EU Gastroentrologist Associations (google it!).  This tells me that he might not know what he is doing (or we don't have the complete picture here).  

Can your primary care doctor (GP/Internist) order the celiac disease blood tests? 

Here's my technique for getting my doctors to comply with my wishes.  I write them a letter or email and present them with documented research (no information from blog sites).  In writing, they have to respond.  Take one of your parents with you.  At 22, he could be brushing your off.  It's nice to be able to have someone with you during a doctor's visit as well especially, when you are sick and not thinking clearly.  Taking notes helps too.  Document. Document. Document.  Research. Research. Research.

Finally, keep eating gluten until all testing is complete. 

 

 

[ccole93]

Thank you for your responses!! Before I respond in turn, I just wanted to offer the results of the next round of tests. The barium came back normal, save for "filling deficiencies" in my terminal ileum. She mentioned ulcers or lymphoid hyperplasia. The doctor already noticed he lymphoid hyperplasia both there and in my descending colon. Normal, my GI says. Histology was all normal. He wants to proceed with the capsule which will cost me $150. He took one biopsy of the small intestine but I don't know exactly where. 

SO. Yes, I get the feeling he doesn't know what he's doing. I'm calling tomorrow to request the blood testing before the very expensive endoscopy. He only took one biopsy and I'm not sure if it was of the actual flat patch he mentioned. Either way, the histology was normal. I think the capsule will yield a better picture but I'm asking for blood tests first. As aforementioned, they're much cheaper. 

To the other poster--your Hgb is super low!!! 6.6 is below the threshold for transfusion!! But I'm hopeful for you as well. I'll post my other test results as they roll in. This is so expensive and frustrating!!!

[Estes]

What state or country do you live in?

[ccole93]

New York in the US

[cyclinglady]

Your GI is either incompetent or a rip-off artist (one biopsy!).  I would highly recommend getting to your GP/PCP for a celiac blood panel before undergoing any further invasive testing.  There is always a risk for procedures!  Why do I say this?  Because your GI is not following the recommended celiac testing diagnostic procedures as recommended by the American GI Association and other celiac experts like the University of Chicago's celiac center.  Google it!  

I would also recommend bringing in your mother to all your doctor appointments or another family member.  Let's face it.  You are sick and it is hard to advocate for yourself.  

[ccole93]

You're right--I'm already too nice to doctors and too willing to just do whatever they say. I'm calling my GP tomorrow to ask for B12, Ig, celiac, and Crohn's tests. Not sure how it'll work with my insurance with my requesting them. Ugh. 

[frieze]

new doc, and if you take some one with you, make sure it is the most dominating person you can find.  even if they don't say anything, just the "presence" helps.

[ccole93]

I brought my fiancé to the appointment. My doctor was more than happy to do the celiac panel, an IGG test, and B12 deficiency. She's doing a sed rate for Crohn's. Fingers crossed. I've gained 10 pounds in a month and am very fearful I will be 200 pounds before long. 

[cyclinglady]

None of us has asked this, but setting aside celiac disease and anemia, have you been tested for thyroid or other hormonal imbalances like Polycystic Ovarian Syndrome?  Besides a low hemoglobin level, what's your ferritin (iron stores)?  You may have more than one thing going on.  celiac disease and hypothyroidism (fatigue, weight gain, etc.) often go hand-in-hand.  

Glad your sweetheart went with you!  

[ccole93]

My thyroid has been checked many many times and it's surprisingly normal. My grandma had hypothyroidism and I assumed I'd get it. Anywho, my ferritin was last checked in 2013 and was 5. My CBC shows normal anemia values--low hematocrit,  low RBC count, low mean platelet volume, and a high RBC distribution width. 

My calcium was a tiny bit low and my vitamin D is 12. Otherwise nothing strange. I should get my hormones checked, though. 

Yes it was nice having him with me! 

[ccole93]

Already got some blood work back!! B12 is a little low, sed rate is high at 21, and immunodefiency is all negative. Waiting on the celiac panel. 

[frieze]

that vitamin D isn't low, it is abysmal!  what was the number on the B12?  you are supplementing on that D, yes???

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[ccole93]

B12 was 180 so not too low. Yeah I take 5000 units a day to help get it up. Don't want my bones to break apart!!!

The sed rate when I was tested last year was 2 and my Hgb was 11.4. Now it's 21 and my Hgb is 9.6. I read anemia can elevate ESR but that microcytic anemia (which I have) doesn't affect it. Ugh. Can't wait to hear from the doc. 

[ccole93]

The celiac panel was 100% negative. Like bottom of negative, negative, lol. Nothing was anywhere near even slight positive. They did all five tests. So it looks like celiac isn't what's afflicting me--which is good, but doesn't leave me with many answers. Thanks everyone!

IgA: 166

Deamidated Gliadin, Abs IgA: 4

Deaminated Gliadin, Abs IgG: 5

t-Transglutaminase (tTG) IgA: <2

t-Transglutaminase (tTG) IgG: 5

Endomysial Antibody IgA: Negative

[cyclinglady]

13 hours ago, ccole93 said:

The celiac panel was 100% negative. Like bottom of negative, negative, lol. Nothing was anywhere near even slight positive. They did all five tests. So it looks like celiac isn't what's afflicting me--which is good, but doesn't leave me with many answers. Thanks everyone!

IgA: 166

Deamidated Gliadin, Abs IgA: 4

Deaminated Gliadin, Abs IgG: 5

t-Transglutaminase (tTG) IgA: <2

t-Transglutaminase (tTG) IgG: 5

Endomysial Antibody IgA: Negative

It is great that you know that you do not have celiac disease at this time.  But, please make sure your doctor finds the source of all your problems.  Something is not right! 

[ccole93]

I will! I'll post the final diagnosis either way. They're leaning towards early Crohn's but won't know for sure for another week or two. Thanks for all your help!

[frieze]

1. that B12 is much too low, should be at least 400.  do yo have microcytic or macrocytic anemia? 
2. Open Original Shared Link

persistent anemia is addressed in that link.  good luck

[ccole93]

Microcytic hypochromic, which I believe is in touch with Crohn's and celiac? Thank you!! Honestly even if it is Crohn's I should probably avoid gluten. Don't want to rip up my intestines. 

[ccole93]

Just spoke to my GP. She didn't care about the B12 or the sed rate and said both were fine. I think I need a new doctor.