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Bob J

Celiac Sprue & Whte Blood Count

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I was diagnosed Celiac in Sep 2008 via endoscopy. Prior to that, in 2005, I was diagnosed with a Thymoma, a tumor of the Thymus gland which is also considered a complication of the auto-immune system. After two rounds of chemotherapy, the tumor was removed with no further complications. However, during 2006 - 2008, I began to develop intestinal distress and by 2007-2008, I was having major gastric distress including what is known as "explosive" diarhea. After diagnosis, I followed the Dr's and Nutritionists instructions and did my best to become gluten-free. However, over the ensuing years, I have had bouts of "D" and stomach distress due to the ingestion of "hidden" gluten in restaurant food; even those that claim to have gluten free menus. (Sorry this is taking so long to explain).

The short of the story is that before diagnosis and since diagnosis (Sep 08), I have lost 80 lbs - down to my high school weight. Also, my blood tests have periodically shown mild to moderate anemia; example following:

RBC 3.12 Range 4.5 - 6.0

Hemoglobin 10.8 Range 14.0 - 18.0

Hematocrit 30.9 Range 40.0 - 54.0

Mean Copuscular Vol 99 Range 82 - 98

Mean Corpuscular HGB 34.7 Range 27.0 - 31.0

Recently, my White Blood Count (after taking 2 rounds of antibiotics and a couple rounds of steroids for pneumonia) was down to 3.7 range 4.0 - 11.0)

All these years my Internist has glossed over the low RBC and weird HGB and HTC counts without much comment except hmmmm....."must be the Sprue". But now that the White Blood cound has also dropped, he's referred me to a hematologist/oncologist who is using unsettling terms like "possible myeloma or MDS" I've tried to help them connet the dots and look at my overall history, but they seem to be hung up on the white blood count.

Bottom line, I feel great and am an active 69 year old grand dad who just took an 8-yr old grandson to Washington D.C. and I had no problems with all the walking, Metro rides, heat, and exertions of the trip. My question is: WHY DON'T THE M.D.'S take my Celiac Disease more seriously and try to connect the Dots? I'm constantly having to remind them of my history and my struggles with begin glutened, losing and gaining weight, diahrea, etc, etc. But the hematologist seems to be rather focus on everything but that...........And advice or comments you may have would be appreciated. I'm scheduled for another blood test in July and pending the outcome of that will determine whether he wants to pursue a bone marrow aspiration, etc. I've already gone through an extensive blood test for protens and 24 hour urine test to rule out myeloma and leukemia. These were negative. But he still insists we need to look at MDS if the next white blood count comes back low.

Call me frustrated Bob!

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I was diagnosed Celiac in Sep 2008 via endoscopy. Prior to that, in 2005, I was diagnosed with a Thymoma, a tumor of the Thymus gland which is also considered a complication of the auto-immune system. After two rounds of chemotherapy, the tumor was removed with no further complications. However, during 2006 - 2008, I began to develop intestinal distress and by 2007-2008, I was having major gastric distress including what is known as "explosive" diarhea. After diagnosis, I followed the Dr's and Nutritionists instructions and did my best to become gluten-free. However, over the ensuing years, I have had bouts of "D" and stomach distress due to the ingestion of "hidden" gluten in restaurant food; even those that claim to have gluten free menus. (Sorry this is taking so long to explain).

The short of the story is that before diagnosis and since diagnosis (Sep 08), I have lost 80 lbs - down to my high school weight. Also, my blood tests have periodically shown mild to moderate anemia; example following:

RBC 3.12 Range 4.5 - 6.0

Hemoglobin 10.8 Range 14.0 - 18.0

Hematocrit 30.9 Range 40.0 - 54.0

Mean Copuscular Vol 99 Range 82 - 98

Mean Corpuscular HGB 34.7 Range 27.0 - 31.0

Recently, my White Blood Count (after taking 2 rounds of antibiotics and a couple rounds of steroids for pneumonia) was down to 3.7 range 4.0 - 11.0)

All these years my Internist has glossed over the low RBC and weird HGB and HTC counts without much comment except hmmmm....."must be the Sprue". But now that the White Blood cound has also dropped, he's referred me to a hematologist/oncologist who is using unsettling terms like "possible myeloma or MDS" I've tried to help them connet the dots and look at my overall history, but they seem to be hung up on the white blood count.

Bottom line, I feel great and am an active 69 year old grand dad who just took an 8-yr old grandson to Washington D.C. and I had no problems with all the walking, Metro rides, heat, and exertions of the trip. My question is: WHY DON'T THE M.D.'S take my Celiac Disease more seriously and try to connect the Dots? I'm constantly having to remind them of my history and my struggles with begin glutened, losing and gaining weight, diahrea, etc, etc. But the hematologist seems to be rather focus on everything but that...........And advice or comments you may have would be appreciated. I'm scheduled for another blood test in July and pending the outcome of that will determine whether he wants to pursue a bone marrow aspiration, etc. I've already gone through an extensive blood test for protens and 24 hour urine test to rule out myeloma and leukemia. These were negative. But he still insists we need to look at MDS if the next white blood count comes back low.

Call me frustrated Bob!

Hi Bob,

Sorry you have had this experience and I know what that's like! Doctors just love to scare people....

I have had lifelong low white cell counts and that can be solely from having autoimmune problems. I went the hematologist route also, even though I never believed I had anything more serious than Celiac and a few of the other associated AI diseases. I had the same results as you.....everything was fine. I would have never allowed a bone marrow biopsy based on low white cell counts only. That's ridiculous.

What concerns me is that you are still having anemia problems and weight loss. How tight are you with the diet? You may either be getting some gluten still to cause this or you should be evaluated for Refractory Sprue. Anemia should resolve on the gluten-free diet.

I am never going to have high red cell counts either but at least I am not severely anemic anymore. The problem is what you stated...the doctors are going to look first for cancers and blow off your real concerns about your history. You need to find someone well versed in Celiac Disease because these other doctors are not helping you, they are running you in circles.

My white cell counts are typically in the high 2's to low 3's and I am fine. I rarely get sick but I still get the occasional virus that goes around. I was told by more than one doctor that low white cell counts can be the result of autoimmune disease

and I have 4, total. I will never have normal blood work and I do not worry about it. This is common for Celiac Disease.

You need better doctors and I wish you the best of luck!

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Hi Bob,

Sorry you have had this experience and I know what that's like! Doctors just love to scare people....

I have had lifelong low white cell counts and that can be solely from having autoimmune problems. I went the hematologist route also, even though I never believed I had anything more serious than Celiac and a few of the other associated AI diseases. I had the same results as you.....everything was fine. I would have never allowed a bone marrow biopsy based on low white cell counts only. That's ridiculous.

What concerns me is that you are still having anemia problems and weight loss. How tight are you with the diet? You may either be getting some gluten still to cause this or you should be evaluated for Refractory Sprue. Anemia should resolve on the gluten-free diet.

I am never going to have high red cell counts either but at least I am not severely anemic anymore. The problem is what you stated...the doctors are going to look first for cancers and blow off your real concerns about your history. You need to find someone well versed in Celiac Disease because these other doctors are not helping you, they are running you in circles.

My white cell counts are typically in the high 2's to low 3's and I am fine. I rarely get sick but I still get the occasional virus that goes around. I was told by more than one doctor that low white cell counts can be the result of autoimmune disease

and I have 4, total. I will never have normal blood work and I do not worry about it. This is common for Celiac Disease.

You need better doctors and I wish you the best of luck!

Thanks Gemini. I need to clarify (seems like I get carried away explaining my history and forget the up-to-date issues.)

I'm actually holding my own weight-wise now; have even gained 4 lbs since I've started being more "fanatic" about policing my restaurant food. Most all of my gluten poisoning came from there and I think I was in a revolving door with my the healing process; 2 weeks ok - then "bang" and a week of recovery. Course, I know you don't really recover in a week. One contaminated meal can set you back for weeks or months. One thing is clear, I stop losing weight and feel better when I get "fanatical" about my food policing and I lose weight when I get glutened and have the big "D" blowout. So maybe that's an indication I'm not refractory yet....?

I know I've suffered from mal-nutrition and mal-absorption. That's obvious. However, my anemia has only been with the RBC to date, only recently did it start affecting the white blood count. I'm beginning to research the relationship of Copper deficiency and Celiac Disease. Along with my recommitment to policing the gluten, I may need to bolster my Copper content for a few weeks (2-5 mg/day) to help the White Blood Count. Any thoughts you have on that would be appreciated.

You're probably right about the Doctors. You'd think in Houston there would be an adequate army of Doctors well-versed in celiac disease, but................I haven't found them. Thanks again for responding.

Bob

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Thanks Gemini. I need to clarify (seems like I get carried away explaining my history and forget the up-to-date issues.)

I'm actually holding my own weight-wise now; have even gained 4 lbs since I've started being more "fanatic" about policing my restaurant food. Most all of my gluten poisoning came from there and I think I was in a revolving door with my the healing process; 2 weeks ok - then "bang" and a week of recovery. Course, I know you don't really recover in a week. One contaminated meal can set you back for weeks or months. One thing is clear, I stop losing weight and feel better when I get "fanatical" about my food policing and I lose weight when I get glutened and have the big "D" blowout. So maybe that's an indication I'm not refractory yet....?

I know I've suffered from mal-nutrition and mal-absorption. That's obvious. However, my anemia has only been with the RBC to date, only recently did it start affecting the white blood count. I'm beginning to research the relationship of Copper deficiency and Celiac Disease. Along with my recommitment to policing the gluten, I may need to bolster my Copper content for a few weeks (2-5 mg/day) to help the White Blood Count. Any thoughts you have on that would be appreciated.

You're probably right about the Doctors. You'd think in Houston there would be an adequate army of Doctors well-versed in celiac disease, but................I haven't found them. Thanks again for responding.

Bob

I'm happy to hear that you are weight stable so I don't think you have Refractory. I know it can be daunting at times when eating out but you can eat out successfully even with Celiac Disease. You just have to limit the times you go out and stick with places that get it right. I love eating out but have found the high end restaurants are much better at serving a truly gluten free meal. I also do not eat out that much to limit exposure. At least you know when you have been glutened, as do I, so that makes it easier to figure out.

It could be that it will take a while for the anemia to resolve as you were not as stringent with the diet for awhile? You have to be strict for healing to take place.

However, I still would not worry too much about the white cell count, unless it really tanks. If my white cell count reaches the mid-3's, that's saying something for me. You could have something else going on but it is common for people with autoimmune disorders to have low white cell counts. I also had elevated protein counts (blood), which can be indicative of multiple myeloma, but that has resolved since going gluten free. The white cell count has not. Be sure to tell any of your doctors this as many are clueless on that issue. I am not informed on the relationship of copper deficiency and Celiac disease so cannot offer any advice. To be honest, I don't go to doctors that much. I have been gluten-free for 7 years and am doing quite well so have no need. I find that whenever I do go, they always mess things up and go off on a tangent like you mentioned with your experience. I get very annoyed when I know more about a disease than they do and then they will try and argue something about it. That happened the last time I went when I was sick with a virus.....this doctor I had never met tried to tell me about the gluten free diet and how it could be very unhealthy. <_< Really? I've only been doing this for 7 years and you have been doing it for how long? Oh, that's right....you don't have Celiac Disease! Shesh!

I would just be very wary of any really invasive testing based solely on a low white cell count. Sometimes it can take a very long time to heal and resolve related issues. It can be very frustrating to not be able to find the right person to help. I have been diagnosed for a long time and have never found any doctor who was as well versed in this disease as I and other non-doctors are. I do not have any specialists that I see except a PCP and she is not too bad.

It took 3 years of being very strict before all my symptoms resolved completely. You can also have flare-ups if stressed out about things.

Good luck to you!

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RBC 3.12 Range 4.5 - 6.0

Hemoglobin 10.8 Range 14.0 - 18.0

Hematocrit 30.9 Range 40.0 - 54.0

Mean Copuscular Vol 99 Range 82 - 98

Mean Corpuscular HGB 34.7 Range 27.0 - 31.0

Recently, my White Blood Count (after taking 2 rounds of antibiotics and a couple rounds of steroids for pneumonia) was down to 3.7 range 4.0 - 11.0)

But now that the White Blood cound has also dropped, he's referred me to a hematologist/oncologist who is using unsettling terms like "possible myeloma or MDS" I've tried to help them connet the dots and look at my overall history, but they seem to be hung up on the white blood count.

Low WBC can be hereditary or related to medication, malnutrition, or infection. Prednisone is an immunosuppressant but usually artificially raises WBC. Acute or chronic viral infections can also cause low WBC. I wouldn't worry too much about it being slightly low and just follow up with whatever testing your doctors are recommending. If they recommend something invasive like the bone marrow biopsy, you could always wait a month or so to see if the WBC goes back up, then decide what to do.

It's very possible the slight dip is due to the pneumonia and subsequent treatment. Doctors are probably just being careful especially with your past history of the tumor. (I wish doctors here would follow up like that but they don't). My WBC normally runs around 3.5 but at the lab here that's in the normal range. Edit: Also thought I should mention when I was extremely ill from gluten (around 90ish lbs) my WBC was like 2.2. Obviously malnutrition related. Family member has chronic low WBC in the range of 1.5 - 2.0. His CD4 T-cell count is also very low in the 300 range. He is extremely ill so for him it's quite obvious the low WBC is a problem.

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I'm happy to hear that you are weight stable so I don't think you have Refractory. I know it can be daunting at times when eating out but you can eat out successfully even with Celiac Disease. You just have to limit the times you go out and stick with places that get it right. I love eating out but have found the high end restaurants are much better at serving a truly gluten free meal. I also do not eat out that much to limit exposure. At least you know when you have been glutened, as do I, so that makes it easier to figure out.

It could be that it will take a while for the anemia to resolve as you were not as stringent with the diet for awhile? You have to be strict for healing to take place.

However, I still would not worry too much about the white cell count, unless it really tanks. If my white cell count reaches the mid-3's, that's saying something for me. You could have something else going on but it is common for people with autoimmune disorders to have low white cell counts. I also had elevated protein counts (blood), which can be indicative of multiple myeloma, but that has resolved since going gluten free. The white cell count has not. Be sure to tell any of your doctors this as many are clueless on that issue. I am not informed on the relationship of copper deficiency and Celiac disease so cannot offer any advice. To be honest, I don't go to doctors that much. I have been gluten-free for 7 years and am doing quite well so have no need. I find that whenever I do go, they always mess things up and go off on a tangent like you mentioned with your experience. I get very annoyed when I know more about a disease than they do and then they will try and argue something about it. That happened the last time I went when I was sick with a virus.....this doctor I had never met tried to tell me about the gluten free diet and how it could be very unhealthy. <_< Really? I've only been doing this for 7 years and you have been doing it for how long? Oh, that's right....you don't have Celiac Disease! Shesh!

I would just be very wary of any really invasive testing based solely on a low white cell count. Sometimes it can take a very long time to heal and resolve related issues. It can be very frustrating to not be able to find the right person to help. I have been diagnosed for a long time and have never found any doctor who was as well versed in this disease as I and other non-doctors are. I do not have any specialists that I see except a PCP and she is not too bad.

It took 3 years of being very strict before all my symptoms resolved completely. You can also have flare-ups if stressed out about things.

Good luck to you

Many thanks for taking the time to respond. The experiences of those sharing similar challenges are good therapy for mind and soul; better than the Doc's dire guesses at times.

I am encouraged to get it right on the diet thing and not to worry too much about the blood tests until something really tanks. From looking at the "curve" on my blood counts over the years, there appears to be a strong correlation of my continually getting "glutened" and the slow progress of my anemia. Like you I have found the better restaurants (p.f. chang, carabas, outback, etc) are more reliable on the gluten front. I'm due for another CBC test end of June (the 29th) then a visit with the hematologist again on July 5th. With tightening of my diet discipline and vigilance, I'm hoping to see some improvement, even if it is minor. Here's to hope.

Here's a tidbit on Copper Deficiency. I've read several others, but this kind of gives an overview:

Copper

Copper is a component of many body proteins; almost all of the body's copper is bound to copper proteins. Unbound (free) copper ions are toxic. Genetic mechanisms control the incorporation of copper into apoproteins and the processes that prevent toxic accumulation of copper in the body. Copper absorbed in excess of metabolic requirements is excreted through bile.

Acquired Copper Deficiency

If the genetic mechanisms controlling copper metabolism are normal, dietary deficiency rarely causes clinically significant copper deficiency. The only reported causes are kwashiorkor, persistent infantile diarrhea (usually associated with a diet limited to milk), severe malabsorption (as in sprue), and excessive zinc intake.

Deficiency may cause neutropenia, impaired bone calcification, and hypochromic anemia not responsive to iron supplements.

Diagnosis is based on low serum levels of copper and ceruloplasmin, although these tests are not always reliable. Treatment is directed at the cause, and copper 1.5 to 3 mg/day po

Cheers and good health.

Bob

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Low WBC can be hereditary or related to medication, malnutrition, or infection. Prednisone is an immunosuppressant but usually artificially raises WBC. Acute or chronic viral infections can also cause low WBC. I wouldn't worry too much about it being slightly low and just follow up with whatever testing your doctors are recommending. If they recommend something invasive like the bone marrow biopsy, you could always wait a month or so to see if the WBC goes back up, then decide what to do.

It's very possible the slight dip is due to the pneumonia and subsequent treatment. Doctors are probably just being careful especially with your past history of the tumor. (I wish doctors here would follow up like that but they don't). My WBC normally runs around 3.5 but at the lab here that's in the normal range. Edit: Also thought I should mention when I was extremely ill from gluten (around 90ish lbs) my WBC was like 2.2. Obviously malnutrition related. Family member has chronic low WBC in the range of 1.5 - 2.0. His CD4 T-cell count is also very low in the 300 range. He is extremely ill so for him it's quite obvious the low WBC is a problem.

Thanks so much for taking the time to respond. I'm encouraged to tighten my gluten diet and be much more vigilant in the restaurant envrionment. I'm seeing a high correlation in the curve of my weight loss and the persistent incidents of getting glutened by contaminated foods at restr's. and the slow decline in my blood test results over the years. I have another CBC in June and another visit to the Hematologist in July. With my new resolves, we'll see how that goes. I'm also looking closely at starting some low doses 2-3 mg/day of chelated copper based upon some recent research.

Cheers and good health.

Bob

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