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Hello all, so happy to have found this group. I have a celiac husband and daughter. My daughter was diagnosed over 10 years ago by blood work and a GI scope. She has been on a gluten-free diet since then. Recently we have been struggling with severe anemia. She had a flu type of bug a few months ago that ended up with pure blood bm's. She has been scoped and biopsied from both ends. Every thing looked good and biopsies came back normal. Other than her iron levels that show the anemia. She has been taking oral iron supplements since then and a recheck of blood work show no improvement. Dr was talking about iron injections but they have not been available for months and they think it will be months before they are avalible again. Any suggestions on this? I'm just now reading about B12 injections. Do yo think she may need these?

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Welcome to the Forum. When I was first found to be anemic it was blamed on the usual women's issues rather than celiac disease. How old is your daughter? Did your doctor actually provide the latest iron and B12 readings from the lab - wondered if you could share them?


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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Sure I can share what I have so far.

Hemoglobin was 100. Iron reserves didn't register so from what I understand anything lower than 5 doesn't register.

My daughter is fatigued and is not functioning very well. She also has a heart condition (5 surgeries) asthma and some other things she has to deal with. So needless to say she is tired of feeling crappy.

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"3. Folate

Folate, a B vitamin, is absorbed in the last part of the small intestine, an area that’s often damaged by celiac disease. Folate helps produce new cells, and is particularly important in pregnancy and early childhood. Deficiencies can cause folate deficiency anemia (which is different from iron deficiency anemia), along with serious birth defects such as spina bifada and anencephaly."

I am not sure howreliable this is, but maybe look into this? I got it from the link below

http://celiacdisease.about.com/od/commoncomplicationsofcd/a/Untreated-Celiac-Disease-Can-Cause-Malnutrition.htm

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I developed severe anemia after eating gluten free oatmeal for four months. Ferritin was 9, iron was 20, and all other counts below normal.  Stopped oats, took ferrous gluconate and all returned to normal. Some of us Celiacs react to gluten free oats!

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I have celiac and have have been anemic all my life.  One solution that seems to work the best for me is to make a smoothie made from raw greens daily, such as organic spinach or baby kale along with other veggies and juice.  The breakdown of greens in concentration appeared to improve my hemoglobin count, from 10.1 to 15.3 in a couple weeks.  I was also taking a liquid iron supplement at the time.  I hope others have the same success in treating their anemia. 

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I am also anemic.I have been getting weekly vitamin B12 injections and iv iron infusions.My levels are going up slowly but surely.I have also been trying to eat raw liver which is really yuck but I just want to feel well again so I'll do whatever it takes and it's working which is great.I hope your daughter gets the iv infusions soon.The oral iron supplements didn't do anything for me either.Hope she feels better soon.


2010(Age 17)-Non hodgkins lymphoma(chemo,radiation)

2011(Age 18)-Bone marrow transplant.

2014(Age 21)-Diagnosed with Multiple sclerosis after mri and lumbar puncture

2015(Age 22)-Diagnosed with celiac disease after positive bloods and biopsy,secondary acute myeloid leukemia

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Mari&me - in response to your B12 question,  again, that is something that can be assessed with a specific B12 blood test. My B12 was low on Dx, but I think I have a continuing problem as I get prolonged pins and needles and I start taking B12 sublinguals with large doses and this really seems to help.  Reading mrsrag's comment about gluten-free oatmeal has really made me think - it shows just how quickly our levels can drop.  I am definitely going to get my vitamin and iron levels checked again!  I don't know about the States but it seems to me that here B12 and iron checks are not always given routinely after DX which I think they should be.   I have often read on this and other websites that if any of us are experiencing neurological symptoms we need to ensure our B12 levels aren't just borderline, but around the 500 mark. 


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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We are doing the blood work for B12 this week. We are in Ontario Canada and the Dr said they haven had the iron injections in months and nobody seems to think we will have them any time soon. Our GP was no help last week. She said her hands were tied and we would just have to wait. We are trying to get in to the GI Dr to see if they will be of any more help. My daughter is 21 and she is trying to eat foods high in iron but she is a pretty picky eater!

I will be interested to see how the B12 looks. She is very frustrated right now and just wants to feel normal again.

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It must be very frustrating.   I really hope you can get the injections soon - in the meantime, I gather orange juice with the tablets might help with the take up.  Might be worth a try.


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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Besides an iron-deficiency anemia, has other anemias been ruled out? You can have more than one type.


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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OK so we are still battling our way through this anemia. Her B12 and folate came back normal. The Dr tried to get us in to a GI specialist. She was denied because her scope and colonoscopy came back normal! I don't understand how the can do that when she does have Celiac! The GI specialist recommended she see a hematologist so now we are waiting to see if they will except her. We were told because her B12 and folate were normal that this is just iron deficiency. Does this sound right to you who are experienced with this?

In the mean time she is exhausted and still so tired she barley functions.

I am also waiting on the Cardiologist to see if they will take a look at her heart to make sure her replacement valve is still working. Her last appointment was less than a year ago and it was fine.

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Has she been taking the iron supplements to increase her ferritin level? Has she been eating iron-rich foods? Has she been strictly gluten-free -- meaning any chance of getting gluten from a hidden source? Did you eliminate oatmeal as one poster suggested? Is she eating lots of gluten-free proceessed junk food and getting more than 20 parts per million accumulation? Have you had a celiac blood test panel recently to check diet compliance? I know her gut appeared normal during her last endoscopy and colonoscopy but the blood test would still be helpful.

You posted that her low hemoglobin (100) is as a result of her low iron (ferritin) and that something is preventing her from absorbing that iron (like gluten exposure). Or she could have a genetic anemia that is compounding the problem that the doctors could be overlooking? What are the size of her blood cells? Those should show in a CBC test.

I have Thalssemia (genetic anemia having tiny blood cells) which impacts my hemoglobin levels. I also had iron-deficient anemia (low ferritin stores in my case) due to celiac disease. I am telling you this because it is possible to have more than one type of anemia. I can function with a hemoglobin at a 100, ran even a 1/2 marathon with those levels (not fast but steady!) So, I am concerned that her extreme fatigue could be related to something else. I had to get to a 70 before I had extreme fatigue, but we are all different!

I am not a doctor so my advice is that I would get her heart checked out again, see the hemotologist but would really look at her gluten-free diet. Iron injections can be helpful, but my doc says they leave marks. Plus, can you really take injections and supplements forever? The root cause of the deficiency must resolved.


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Yes she has been taking a double dose of iron with a bit C pure juice and eating as much iron type of foods as I can get in to her (she's picky) and yes she does eat gluten-free "junk food". No to the oatmeal, she doesn't eat that.

The Dr did mention her blood cells looked larger than normal, they didn't seem to worried???

I did get a call from the Cardiologist and we see them for an echo in this week. Cardiologist doest feel its related to her heart but at least wants to take a look. That made my daughter feel better.

We haven't re done the Celiac blood work but I think I will ask to have that done.

Thanks for your in put.

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One thing I've learned is to request print outs of all of the lab results and make sure they include the reference ranges. That way you can see exactly what was tested as well as what the actual results are (not just a doctor saying all is normal).

 

Back in 2012, after a particularly bad episode of anemia-like symptoms (I couldn't get out of bed for three days), I went to my doctor and requested an iron panel be run. Those tests included serum iron, ferritin, transferrin, TIBC, and saturation %. A standard CBC was also done at the time to complete the picture.

 

When my doctor looked at the results, she interpreted them as iron deficiency and advised me to take oral iron. I am not a doctor, but when I looked at the results I realized her interpretation was mistaken. In iron deficiency serum iron and ferritin are low but transferrin is high. In my case the serum iron was low but the transferrin was low also and my ferritin was still normal. I had anemia of chronic disease (also known as anemia of inflammation) which is an anemia triggered by the body's immune response. And, more importantly, it can't be treated by oral iron. When I questioned my doctor about it, she realized the mistake and agreed with me. That is why it is important to get print outs and look them over.

 

Notice that I said all of that occurred back in 2012. I finally received an iron injection just a month and a half ago. It took me about 3 years to convince someone to actually treat the problem. I think a lot of doctors are wary of giving iron injections because they are uncomfortable and, if the doctor administers it incorrectly, it can produce a permanent dot on the skin. Iron infusions are considered superior to injections. If iron injections aren't available, are iron infusions available?

 

As cyclinglady said, it is possible to have more than one type of anemia.

 

With such a low ferritin level, I'm surprised there is not more urgency from her doctors to do something to treat it. The first step to figuring it all out is getting copies of all the lab results.

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Hello Mari&me,

You sound like my mum and dad-worried...x

Just wanted to say I'm thinking of your daughter and hope she feels better soon.Hopefully the doctors will figure out what's causing the anemia soon.I'll pray that it's nothing serious.


2010(Age 17)-Non hodgkins lymphoma(chemo,radiation)

2011(Age 18)-Bone marrow transplant.

2014(Age 21)-Diagnosed with Multiple sclerosis after mri and lumbar puncture

2015(Age 22)-Diagnosed with celiac disease after positive bloods and biopsy,secondary acute myeloid leukemia

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