Gluten Intolerance And Low White Blood Cell Counts?

[disturbedme]

Hello there. I'm new here.

I was just diagnosed with gluten intolerance today.

I am wondering if anyone else here has a low white blood cell count or had a low white blood cell count but going completely gluten free has raised it or at least made your blood levels normalize?

I've had a very low white blood cell for a very long time. Since I was in high school, at least. Nothing has ever helped it. I've had bone marrow biopsies and lots of blood tests that show nothing out of the ordinary wrong. I've been dealing with it for so long, but it's something I'll never get used to. Having a low white blood cell count is scary. My levels are sometimes in the dangerously low ranges. My white blood cell count is usually 1.9 - 2.9 (normal range is 4.0 - 10.5 mostly).

I have no idea how long I've been gluten intolerant, but I suspect it's been a long time.

Just wondering what your experiences have been with blood levels (Low white blood cell counts) and gluten intolerance/celiac.

Thank you!

[strawberrynin]

A lot of people have issues with blood counts of varying nature. I'd have your doc run a more comprehensive metabolic panel and check your trace elements and minerals. Iron is a common deficiency in celiac.

[disturbedme]

A lot of people have issues with blood counts of varying nature. I'd have your doc run a more comprehensive metabolic panel and check your trace elements and minerals. Iron is a common deficiency in celiac.

Strawberrynin, I do know that my ferritin levels are very low. I've had that tested before.

[Gemini]

Hello there. I'm new here.

I was just diagnosed with gluten intolerance today.

I am wondering if anyone else here has a low white blood cell count or had a low white blood cell count but going completely gluten free has raised it or at least made your blood levels normalize?

I've had a very low white blood cell for a very long time. Since I was in high school, at least. Nothing has ever helped it. I've had bone marrow biopsies and lots of blood tests that show nothing out of the ordinary wrong. I've been dealing with it for so long, but it's something I'll never get used to. Having a low white blood cell count is scary. My levels are sometimes in the dangerously low ranges. My white blood cell count is usually 1.9 - 2.9 (normal range is 4.0 - 10.5 mostly).

I have no idea how long I've been gluten intolerant, but I suspect it's been a long time.

Just wondering what your experiences have been with blood levels (Low white blood cell counts) and gluten intolerance/celiac.

Thank you!

I have had life long low white cell counts and did some investigating on my own. I found out from a good hematologist that this is fairly common in people with autoimmune disorders, not just celiac Disease. The blood does not lie and many diseases and disorders will show in a person's blood work, in various ways if you know how to read it. It is also familial in my family meaning that most of my first degree relatives also have low white cell counts. They also have multiple autoimmune problems.

Going gluten free will not change this as Celiac does not go away, it is managed. You always have Celiac Disease, whether you follow a strict gluten-free diet or not. From my personal experience, it only matters if you become chronically ill. If you suffer from many colds and catch everything that comes down the Pike, then it may be a cause for worry. I never get sick anymore, now that I am gluten-free yet my white cell count remains low. I do not give it a second thought anymore and neither should you, unless you are always getting sick. These numbers are just "normal" for someone with autoimmune problems.

I was lucky to find a good hematologist because I wasn't about to undergo a bone marrow biopsy for something I have had all my life. If it were serious, I'd be dead by now! She wasn't even phased about it after questioning me about whether I get sick a lot or not. She told me right up front that it is just a common thing for people like us and not to worry about it. As most hematologists see really bad diseases on a daily basis, the ones that will kill you quickly, I felt lucky to "just have" a few autoimmune problems which can be controlled with diet!

Welcome to our world and I hope you feel better soon, once you go gluten-free. It's amazing the difference it will make!

[disturbedme]

I have had life long low white cell counts and did some investigating on my own. I found out from a good hematologist that this is fairly common in people with autoimmune disorders, not just celiac Disease. The blood does not lie and many diseases and disorders will show in a person's blood work, in various ways if you know how to read it. It is also familial in my family meaning that most of my first degree relatives also have low white cell counts. They also have multiple autoimmune problems.

Going gluten free will not change this as Celiac does not go away, it is managed. You always have Celiac Disease, whether you follow a strict gluten-free diet or not. From my personal experience, it only matters if you become chronically ill. If you suffer from many colds and catch everything that comes down the Pike, then it may be a cause for worry. I never get sick anymore, now that I am gluten-free yet my white cell count remains low. I do not give it a second thought anymore and neither should you, unless you are always getting sick. These numbers are just "normal" for someone with autoimmune problems.

I was lucky to find a good hematologist because I wasn't about to undergo a bone marrow biopsy for something I have had all my life. If it were serious, I'd be dead by now! She wasn't even phased about it after questioning me about whether I get sick a lot or not. She told me right up front that it is just a common thing for people like us and not to worry about it. As most hematologists see really bad diseases on a daily basis, the ones that will kill you quickly, I felt lucky to "just have" a few autoimmune problems which can be controlled with diet!

Welcome to our world and I hope you feel better soon, once you go gluten-free. It's amazing the difference it will make!

Thanks, Gemini. It's ridiculous that I'm 25 and have had a VERY low white blood cell count most of my life and no one has found out the cause yet. I am tired of dealing with it NOW. I see my hematologist again in August. I am going to have to ask him to test me for as many autoimmune disorders that he can think of.

Also, from what I know, my parents don't have this issue with their white blood cells. It seems to be only ME. Unless my grandparents dealt with it, but I am not sure about that. Thank you for your reply. It means a lot to hear someone else going through the same thing as me.

[Gemini]

Thanks, Gemini. It's ridiculous that I'm 25 and have had a VERY low white blood cell count most of my life and no one has found out the cause yet. I am tired of dealing with it NOW. I see my hematologist again in August. I am going to have to ask him to test me for as many autoimmune disorders that he can think of.

Also, from what I know, my parents don't have this issue with their white blood cells. It seems to be only ME. Unless my grandparents dealt with it, but I am not sure about that. Thank you for your reply. It means a lot to hear someone else going through the same thing as me.

Doctors are not very well versed in autoimmune diseases but to my surprise, the hematologist was more informed and knowledgeable than any other doctor I ever saw. She smiled and told me that the low white cell count was a very common issue with multiple/single autoimmune problems. I thought why the hell don't the others know this!

I am 50 years old and have had this for at least 30 years. My numbers were sometimes as low as yours. I only see a doctor every 3 years so we'll see what happens on my next visit in February, 2010. I will have been gluten-free 5 years by then so it ought to be interesting.

Be aware that testing for autoimmune problems is very difficult. They do not always show up in blood work screening. Usually you develop certain symptoms and then go for testing based on your symptoms. It might be just the Celiac alone causing your low white cell count. All I know is the hematologist made it very clear to me that I was NOT to go home and worry about this.....as long as I didn't start being sick all the time. She had patients in her waiting room who were being treated for blood cancers and didn't want me freaking out thinking I was going to die. I've never had a doctor be so kind and concerned about my mental state before. As you must have realized, it's scary going to a hematologist because they generally diagnose and treat life threatening diseases. I was very thankful leaving her office that all I had were 4 autoimmune problems and nothing else! It's all relative.....

[disturbedme]

I was very thankful leaving her office that all I had were 4 autoimmune problems and nothing else! It's all relative.....

Gemini, can I ask what FOUR autoimmune problems you were diagnosed with? I am trying to make a list of things to take to my hematologist when I visit in August. Thank you.

[jkr]

Hello there. I'm new here.

I was just diagnosed with gluten intolerance today.

I am wondering if anyone else here has a low white blood cell count or had a low white blood cell count but going completely gluten free has raised it or at least made your blood levels normalize?

I've had a very low white blood cell for a very long time. Since I was in high school, at least. Nothing has ever helped it. I've had bone marrow biopsies and lots of blood tests that show nothing out of the ordinary wrong. I've been dealing with it for so long, but it's something I'll never get used to. Having a low white blood cell count is scary. My levels are sometimes in the dangerously low ranges. My white blood cell count is usually 1.9 - 2.9 (normal range is 4.0 - 10.5 mostly).

I have no idea how long I've been gluten intolerant, but I suspect it's been a long time.

Just wondering what your experiences have been with blood levels (Low white blood cell counts) and gluten intolerance/celiac.

Thank you!

I know I posted this before but I thought I would share this with you. I've had a low white count for years. It varies from 2.9 to 3.1. I work for a hematologist and she was never concerned. I'm having an endoscopy next week because my blood tests were high. I am 50 years old and I think I've celiac since a child. Anyway, now it all makes sense. I never knew that celiacs can have neutropenia (low WBC). I'm going to ask the doctor about other auto immune diseases too. My sister has type 1 diabetes also. It will be interesting to see if my WBC goes up once I go gluten free. Good luck with everything.

[Gemini]

Gemini, can I ask what FOUR autoimmune problems you were diagnosed with? I am trying to make a list of things to take to my hematologist when I visit in August. Thank you.

I have Celiac, Hashi's thyroid, Sjogren's Syndrome and Reynaud's Syndrome...the one where your fingers and toes turn white/blanched and the circulation shuts down temporarily. They can also become numb from this. The Reynaud's has improved dramatically since going gluten-free but it still happens, especially in cold weather. There really isn't a test that I am aware of for Reynaud's but it happened one day in the ophthalmologist's office and she looked down in astonishment because my hands turned dead white. She asked me if I had Reynaud's also and I just looked back and thanked her for confirming my diagnosis!

I also have tested positive high on my ANA and Rheumatoid factor blood test, which are for general inflammation (ANA) and rheumatoid arthritis. However, I have absolutely no symptoms of the problems associated with these tests so am not convinced I have them at all. No achy joints or muscles at all or stiffness for that matter so I choose to remain positive on that. My doctor thinks otherwise and has referred me to a rheumatologist but from what I can gather from people who have gone that route, you don't gain much by seeing one. Autoimmune problems are hard to diagnose and they generally don't make it official until you have flaming symptoms to match the blood work. I don't fall into that category.

[NicoleAJ]

my white blood cell count has been low for years (I'm 29), and to the best of my knowledge no one else in my family is affected. I've been gluten free for five years now, and my wbc is still low--not dangerously low or anything though. I've never had a doctor worry about it, and I haven't shown awful symptoms related to it, so I just don't worry about it.

[Bear]

Hello there. I'm new here.

I was just diagnosed with gluten intolerance today.

I am wondering if anyone else here has a low white blood cell count or had a low white blood cell count but going completely gluten free has raised it or at least made your blood levels normalize?

I've had a very low white blood cell for a very long time. Since I was in high school, at least. Nothing has ever helped it. I've had bone marrow biopsies and lots of blood tests that show nothing out of the ordinary wrong. I've been dealing with it for so long, but it's something I'll never get used to. Having a low white blood cell count is scary. My levels are sometimes in the dangerously low ranges. My white blood cell count is usually 1.9 - 2.9 (normal range is 4.0 - 10.5 mostly).

I have no idea how long I've been gluten intolerant, but I suspect it's been a long time.

Just wondering what your experiences have been with blood levels (Low white blood cell counts) and gluten intolerance/celiac.

Thank you!

[Bear]

I have not been diagnosed with any gluten problems. I do have the symptoms though. I have had two blood panels done resulting in two low equivacal ratings. I have also had 2 upper GIs and a colonoscopy all negative. I have a low wbc, take b12 injections, and finished a 12wk megadose of vitamin d. I see a "neurologist", and oncologist/hematologist, and cardiologist for constant heart palpitations for two years now. My lowest WBC was 1.2 back in Jul 2001 no doctor caught my low wbc until two years ago and when a comphrensive review was conducted as far as they could go. The reason I'm responding is I have seen a couple of Docs who have advise me to stop gluten. I have and my WBC has gone up over a year and a half. I am now at 3.5 as of yesterday. I really don't know what to attribute it to but I suspect keeping up the vitamin D supps or being encouraged repeatedly to be gluten free. I have never had 3 in a row increases. I had just google the topic when I came up with the posting I'm responding too. Just trying to understand if this is a possible cause. I can't really say I feel any better for the better reading results but maybe in time. My understanding in talking to other where I live is it could take as little as 6weeks or 1yr to really get the full benefit with an additional 2years to peak. So until then I will keep up with my supps B12/Vit D and avoid gluten.

[Gemini]

I have not been diagnosed with any gluten problems. I do have the symptoms though. I have had two blood panels done resulting in two low equivacal ratings. I have also had 2 upper GIs and a colonoscopy all negative. I have a low wbc, take b12 injections, and finished a 12wk megadose of vitamin d. I see a "neurologist", and oncologist/hematologist, and cardiologist for constant heart palpitations for two years now. My lowest WBC was 1.2 back in Jul 2001 no doctor caught my low wbc until two years ago and when a comphrensive review was conducted as far as they could go. The reason I'm responding is I have seen a couple of Docs who have advise me to stop gluten. I have and my WBC has gone up over a year and a half. I am now at 3.5 as of yesterday. I really don't know what to attribute it to but I suspect keeping up the vitamin D supps or being encouraged repeatedly to be gluten free. I have never had 3 in a row increases. I had just google the topic when I came up with the posting I'm responding too. Just trying to understand if this is a possible cause. I can't really say I feel any better for the better reading results but maybe in time. My understanding in talking to other where I live is it could take as little as 6weeks or 1yr to really get the full benefit with an additional 2years to peak. So until then I will keep up with my supps B12/Vit D and avoid gluten.

Bear......I am happy to hear that your WBC has gone up! With all of the symptoms and health issues you describe, it sounds like you have Celiac and the doctors have just not been able to diagnose you. The rise in your counts could very well be from eating gluten-free. I have 4 autoimmune issues in total so I am not so sure if mine will ever rise up to a normal level. I don't really care because I rarely get sick so don't worry about it.

You may want to consider having your thyroid checked because heart palpitations are a symptom of hyper-thyroid and thyroid problems go hand in hand with Celiac Disease. Make sure you get copies of all results because doctors are notorious for not letting patients see their tests and then telling them everything is fine. It's worth looking into. I am surprised that the docs who advised going gluten free didn't want to test you for it, or did they?

Low WBC's are classic for autoimmune problems so you definitely have something going on which isn't being addressed by the medical community. I wish you continued improving health!

[Bob J]

Bear......I am happy to hear that your WBC has gone up! With all of the symptoms and health issues you describe, it sounds like you have Celiac and the doctors have just not been able to diagnose you. The rise in your counts could very well be from eating gluten-free. I have 4 autoimmune issues in total so I am not so sure if mine will ever rise up to a normal level. I don't really care because I rarely get sick so don't worry about it.

You may want to consider having your thyroid checked because heart palpitations are a symptom of hyper-thyroid and thyroid problems go hand in hand with Celiac Disease. Make sure you get copies of all results because doctors are notorious for not letting patients see their tests and then telling them everything is fine. It's worth looking into. I am surprised that the docs who advised going gluten free didn't want to test you for it, or did they?

Low WBC's are classic for autoimmune problems so you definitely have something going on which isn't being addressed by the medical community. I wish you continued improving health!

Gemini, I'm responding to a rather old post, but it's because the subject matter is of great interest to me and I wanted to a better understanding of your views on Celiac Sprue and low Red and White Blood Counts.

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, 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 hmmmmmmmmm.....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!

[Legz]

I was diagnosed with celiac 2 years ago and have had problems with my wbc for 7 years. They have ran every blood test you can think of, have had 2 bone marrow biopsys done, tested for leukemia, cancer and it has all come out negative. I have severe pain in my joints, bones and musceles and they can't figure out what's wrong. I switched oncologist/hematologist twice. I'm frustrated because I'm in constant pain and nobody can figure it out. I have lost lots of weight, I'm down to 100 lbs. 

They are trying to say its just the celiac. But why are my counts so low? Normal range is 4.5-11 I'm a 1.9

Red count normal is 150-500 and mine is 116

I forget things, headache, joint pain, depression, mood swings... I just don't get it.

[Gemini]

Low WBC's are common for those with autoimmune disease, and that coming from a very good hematologist I saw about 6 years ago.  She see's this all the time.  After 10 years gluten-free, I still have lower WBC's but it doesn't matter as long as you are not getting sick all the time.

I would say that if you have pain and are losing weight, there is something else going on and they haven't found it yet.......it probably is another autoimmune disease, which is common for us.  It can also take much longer to completely heal from Celiac, if you are older.  It took my cholesterol 10 years to come up to the levels that most people have so I know I am absorbing normally now.  I was 46 when diagnosed.  Muscle, bone and joint pain can just be from Celiac inflammation that hasn't calmed down yet.  Have you been screened for the other AI diseases that can happen with Celiac?

[BlakeGracieKarsen]

Hi, 

I have had low wbc all my life (I’m 34 now) I tested positive for ANA and anti ro which they thought was Lupus but now think a mild Sjogrens which I don’t have any symptoms just normal hormonal ones after 3 children. I just recently cut out gluten after a bad gastric issue and pain and I don’t consume dairy. I’m healthy, exercise everyday and I am hoping to have these numbers up in the normal range. It drives me nuts even though they say it could be my normal although maybe it is just my normal.  

[Tanya23]

On 9/24/2015 at 1:15 AM, Legz said:

I was diagnosed with celiac 2 years ago and have had problems with my wbc for 7 years. They have ran every blood test you can think of, have had 2 bone marrow biopsys done, tested for leukemia, cancer and it has all come out negative. I have severe pain in my joints, bones and musceles and they can't figure out what's wrong. I switched oncologist/hematologist twice. I'm frustrated because I'm in constant pain and nobody can figure it out. I have lost lots of weight, I'm down to 100 lbs. 

They are trying to say its just the celiac. But why are my counts so low? Normal range is 4.5-11 I'm a 1.9

Red count normal is 150-500 and mine is 116

I forget things, headache, joint pain, depression, mood swings... I just don't get it.

Hello, I am new here and I’m aware this is an older post. Wondering if you ever got answers as I have the exact same symptoms with the addition of low platelet counts. I have recently been diagnosed with celiac and they say that causes the joint pain, headaches, mood swings, mouth sores, brain fog, low WBC, anemia, low RBC, extremely low neutrophils and low platelets. I keep getting referred to new doctors but no answers. 
 

Thank you!

[Scott Adams]

Hi @Tanya23, welcome to the forum!

Others have posted on this before:

https://www.celiac.com/search/?q="low platelet"&quick=1&updated_after=any&sortby=relevancy&search_and_or=and

and you may find this post helpful:

 

[Suze046]

Hello, I am new here and currently on my 3rd week of gluten-free and finally starting to feel better after 5 months of pain, IBS symptoms, and losing 1 and a half stone.  I also have low white blood cells and wondered if it might be related.  Just wanted to share! I've been tested for autoimmune diseases and had stool tests, blood tests and all fine (apart from white blood cells are at 3.0). Doc wants to retest for Celiac but I need to be eating gluten and quite frankly, I really don't want to! 

[cristiana]

Hello Suze and welcome to the forum.

Can you tell us which country you are posting from?  The reason I ask is that in some countries, it is quite a good idea to be tested for coeliac disease because if it turns out you are a coeliac, you will be given additional support by the government. 

For example if you live in the UK, the NHS offers support from a nutritionist, DEXA bone scans to check for osteoporosis/osteopenia to which coeliacs are sometimes prone, additional vaccinations against certain illnesses, annual reviews with a gastroenterologist to check for dietary compliance and possible health complications, and, in some regions, a prescription to help with the purchase of gluten free bread and other staples, which can be pricey.

Another example is Italy.  According to the Celiac Disease Foundation, in Italy, coeliacs are given up to 140 Euros a month to buy specifically gluten free food.  (Source: https://celiac.org/gluten-free-living/global-associations-and-policies/policies-around-the-world/#:~:text=Diagnosed celiacs receive vouchers to,to deal with celiac disease.)

But with regards to your white blood cells, my levels were similarly low from memory a couple of years ago during a period of quite high stress.  It was picked up in a pre-op blood test.  But nobody blinked an eyelid at the results.  A few months later at my coeliac review with my gastroenterologist the levels had normalised.  As you are concerned, do raise it with your doctor, but it could well just be a blip as it was in my case.  

 

 

[Suze046]

Hey! Thanks and yes of course I’m posting from England. Thanks for the info 😊my count has been up and down for over a year and my platelets are slightly low too but have actually just increased again.

[cristiana]

Great to have another UK person on the forum!  

Re: blood tests, it sounds as if you are being well monitored but if you have any further concerns about blood tests or anything else, do not hesitate to start a new thread.

Cristiana

 

Edited August 15 by cristiana