Extreme anemia- any thoughts

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alli sunshine
Regular Member

Date Joined May 2009
Total Posts : 40
   Posted 2/20/2010 1:54 PM (GMT -7)   
I have history of severe anemia and very, very low vitamin D levels. I had a uterine ablation done last year, and have been on 1,000mg daily for over a year. I am reposting this from another board, as I have been trying to get to the bottom of the problems. Went to a new doc last week for blood work just to check my levels, and this is what I found. She is the one who mentioned celiac to me. Any thoughts would be appreciated.

I had more blood work done and got the results. My ferritin level was extremely low. Due to this, combined with very low serum iron and very low vitamin D, she is putting me on massive doses of vitamin D and prescription iron. If in 6 weeks she doesn't see "dramatic" improvement" she is sending me to a hematologist to have an IV iron transfusion and have them figure out why I am having absorption issues. That being said, the blood work for my celiac came back negative. I am somewhat confused by all this. I was on prescription iron last year when we first discovered my anemia issues. I have since had a uterine ablation and have not had a period since June of last year. I was really thinking things would have perked up by now. Do you think I could still have celiac issues even thought the blood work came back negative? I just can't figure out why I am not getting better.

I have many symptoms- chronic stomach inflamation, gastroparesis, Raynaud's, joint pain, fatigue, high ANA (1:640), family history of RA, but the rheumy I saw did lupus DNA testing and said nothing came back, but that I needed to be watched for autoimmune to develop. Do you think all of this is connected?

Sorry about so many questions, I am just tired of trying to figure all of this out. It is like a bad dream that goes on and on.


Regular Member

Date Joined Nov 2009
Total Posts : 35
   Posted 2/20/2010 5:43 PM (GMT -7)   

Dear Alli,

     I was diagnosed with hemolytic anemia 2 years ago. and receive weekly pricrit shots. ( my hematologist did a bone marrow bx, which was normal) Problem is same with all auto-immune disorders. my body attacks my red blood cells. My iron levels have dropped and now they are suggesting iv iron, given once a week , in the office. Also, i have AIH, make sure very thing is ok with your liver. Hope this helps.

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 2/21/2010 1:36 PM (GMT -7)   
Hi Alli,

I did answer you on the lupus board but will also post here. Yes, you can still have celiac if your bloodwork is negative. Have you ever tried to go gluten free? If you were gluten free when your celiac bloodwork was done, it would come back negative. But false negatives are common in any case.

You can test yourself for gluten sensitivity by simply going on the gluten free diet (see this gluten-free how-to guide for help with this), then after a week or two, try eating gluten again and see what happens. Generally you will know pretty quickly if you are gluten sensitive or not...you will feel good while gluten-free and bad when you go back on gluten. Unless you are one of the rare celiacs who are asymptomatic or "silent" celiacs, but you say you have gastro symptoms, so I doubt that you are in that category.

Speaking of symptoms, some common ones are (from celiac.com):

Diarrhea or Constipation
Steatorrhea (fatty stools that float rather than sink)
Abdominal pain
Excessive gas
Any problem associated with vitamin deficiencies
Iron deficiency (anemia)
Chronic fatigue
Unexplained weight loss (or weight gain)
Bone pain
Easily fractured bones
Abnormal or impaired skin sensation, including burning, prickling, itching or tingling
Peripheral neuropathy* (tingling in fingers and toes)

Some people on celiac.com have used the stool testing offered by Enterolab (www.enterolab.com); I haven't used them but I understand that they do not diagnose celiac but they will tell you if you are sensitive to gluten. They also test for the celiac genetic markers, HLA DQ2 and HLA DQ8. Insurance will usually not cover these tests so you would have to pay. You don't need a doctor to order these tests however.

You have a family history of autoimmune disease, you have a positive ANA, gastric issues, joint pain, Raynaud's, fatigue, etc.....a lot of your symptoms sound like celiac disease and others sound more like lupus. I should mention that good doctors rarely go ONLY by bloodwork....they also take your symptoms into account when making a diagnosis. It's possible that you have multiple autoimmune disorders which makes it harder to figure out what's going on....it's difficult to disentangle all of the symptoms, etc. That's been one of my biggest problems; I'm still trying to figure everything out and I've been through years of doctors appts and bloodwork, MRIs, endoscopies and colonoscopies, lumbar punctures, etc, etc.

I've probably had celiac disease most of my life, and I started developing other AI diseases in childhood/teen years. Celiac disease can "open the door" for other AI diseases to develop (see this article for how this works). As you can see in my signature, I've been diagnosed with Hashimoto's thyroiditis, psoriasis, autoimmune hepatitis, rheumatoid arthritis, something that may be lupus or maybe not, etc. I blame celiac for some of these and Lyme disease for the fibromyalgia and maybe some of the other AI diseases.

The other question is, have you been tested for Lyme disease? Lyme can cause elevated ANA and many many other symptoms. It can both mimic and trigger autoimmune diseases and fibromyalgia. You should know that the standard bloodwork for Lyme disease is not sensitive enough to detect most cases of Lyme. You can call Igenex labs and they will send you a test kit to take to your doctor. Igenex is one of the few labs in the country that uses the most up-to-date methods for testing. To find out about others you can ask on the Lyme disease forum; I just know about Igenex because that's who I used.

But like most Lyme disease doctors/labs, Igenex doesn't take insurance so you have to pay up front and get your insurance to reimburse you. I ended up positive for Lyme disease when I thought that NEVER in a million years could I possibly have it. I'm not the outdoorsy type.

Anyway, this post is way too long now and I apologize for that, but I wanted to get everything out there for you to think about! wink

Good luck....keep us posted!!
Lyme Disease, AIH, Hashimoto's, "lupus-like" CTD?, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfate


alli sunshine
Regular Member

Date Joined May 2009
Total Posts : 40
   Posted 2/21/2010 6:18 PM (GMT -7)   
Thank you so much! That was very helpful. I do have many of the issues on the symptom list. I have had stomach problems my whole life. My pcp felt that it was gastroparesis, but I am wondering if maybe it has been celiac. I have emailed the doc at my employee clinic, who is the one who did the extra testing and found just how bad this blood stuff is, to ask if I shouldn't perhaps be sent to a hematologist now, rather than waiting 6 weeks. I have already done 6-7 months of prescription iron, over a year of vitamin D supplements. I am sick of dealing with this. Anyway, we'll see what she says, and depending on the answer, I think I am going to try the gluten free challenge just to see if that makes a difference.

I have not been checked for Lyme. I will bring that up the next time I see the doc as well.

Thank you again for taking such time to answer my questions. You have really been so helpful

Have a good week!
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