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Unexplained Anemia

...Only then did I realize why I was absolutely freezing cold always and very fatigued. I actually got 3 infusions of IV iron in Dec 06, but unfortunately had severe anaphylaxis to it on the 3rd dose. Have been on large doses of oral iron since Dec. Problem is, everything got better (hair stopped falling and hgb/hct shot up beautifully) about 1 month after the IV iron, but 2 months later all probems returned (nearly bald now) despite oral iron. Ferritin level falling again, so I'm not absorbing any of these massive oral iron doses for 6 months.

This brought up the idea of "malabsorbtion". My hematologist knew to think of Celiac, and did only one test, IGG and IGA Anti Transglut, both levels were 17, with lab allowing up to 20 as normal. No biopsy done, I'd already had UGI scope in Dec looking for bleeding to explain the low iron, and I'm in no mood to go through that again. Given that I'm nearly bald with diffuse severe hair loss, and cold and tired again, I decided to try gluten free 3 weeks ago, since there are no other options to try to get the iron up, I can't have IV ever again.

Can't say I "feel better", but I'm guessing it would take awhile to heal any gut damage and then absorb enough iron to get the stores up. I'm still on the oral iron supplements (about 200 mg elemental iron total per day, as directed by the hematologist). I am going to send a stool sample in to Enterolab this week, should be interesting.

I'm just wondering if you've ever heard/seen this type of presentation for celiac, with an isolated iron deficiency that doesn't respond to oral iron. If I have any gut symptoms, they're mild. I have had intermittent very mild diarrhea, gas, bloating since my 20's, but definitely not severe enough to seek medical attention for it. If it's not celiac, then it seems I must resign myself to a lifetime of wigs (aargh), since no one seems to have any other ideas about why the iron isn't being absorbed. There are many articles describing this diffuse type of hair loss in women with very low ferritin/iron stores, but in the studies all the patients responded well to oral iron, their ferritin went up and the hair came back. No mention of celiac in any of those articles, but I have seen hair loss described in some patients with Celiac, presumably due to iron or other nutritional deficiencies.

I don't want to waste your time, but I found if extremely interesting on your site that you describe the increasing allergenicity of the wheat grown today. It is an exact analogy to the latex allergy "epidemic" that developed in the 80's in health professionals wearing the latex exam gloves. Turns out the glove companies were rushing to produce massive quantities of more gloves in response to the AIDS hysteria, and cut short their latex processing procedure. The gloves they were churning out contained a far more allergenic, "rawer" form of latex, which caused a near epidemic of new latex allergies in people wearing the gloves!

If you have time for a response, I would be very grateful. If not, I surely understand and thank you again for your fantastic website! I wish your office were here in Wisconsin, I'd have an appointment ASAP.

Dr. Rima's Response:

Sorry you’re having such troubles. I’m just a plane ride to Houston plus a two hour drive away...

Seriously, I bet you do have Celiac. I would say a 90% chance. You probably had your labs sent to Quest. Their cut offs are just way too high. It misses all but the most severe Celiacs. Our CPL lab has cutoffs of 5 to 10, not 20 or 30. Even with the lower CPL lab “normals” I have found that anyone who has any of the four Celiac panel numbers above 2 is suspect for Celiac. By CPL norms, you would be “positive.” Of the 5 people in my family who have Celiac, only two ever tested positive. The lab tests are just not very sensitive.

I have a very high index of suspicion for unexplained anemia. I have diagnosed a number of them as Celiac. I could tell you story after story of full workups only to end up in the hospital again for transfusion because the anemia is low...again. Stopping the gluten resolves the anemia, but it may take up to a year.

Sometimes the gut is so damaged as to be infected but really can’t tell that with any tests. Maybe what you need is antibiotics for a short time. Road rash on your skin will get infected easily. Think about the Celiac as causing road rash on the gut. And you don’t have to have any symptoms. I have given people a couple weeks of H. pylori antibiotics or sometimes Cipro or Flagyl to heal up the infection. Then you have to be real aggressive with Probiotic supplements to get the “good bugs” established again for about a month or two. It works.

Ask your doc if he/she would try it. At this point, you have nothing to lose except your hair loss (and feeling better). I would be glad to talk to you or your doc more about this too. Because I really believe run-of-the-mill medicine is REALLY missing a big thing ignoring Celiac/gluten intolerance. I’d be glad to spread the word!
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