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Hi I have been given a  working diagnosis of celiac disease TTG 103. I had the endoscopy yesterday and I am awaiting celiac serology ( tests go to a different lab so take longer).

my GI Dr ordered more tests and some have come back odd,

my ferrtain was 9 ( range 20-204)

my folate 4.4 ( range 3.1 - 20.5)

my B12 982 ( range 187-883).

FBC 

mean cell volume 76.9 ( range 80-100)

mean cell haemaglobim 24 ( range 26.9 - 32)

mchc 312 ( range 320- 359).

 

All other results appear to be in the normal range.  My question is the high B12 is odd, has any one else had anemia/ b12 deficiency symtoms whilst having high B12.

 

I went to the Dr as I am feeling awful, dizzy, palpitations and breathlessness and think it's to do with my iron, my gp was beyond useless and thinks it's all due to an infection as I had a temperature of 37.9.

I still feel awful but not Like I have flu awful if that makes sense. I have gone gluten free as I have had the panel and the endoscopy now but feeling so much worse than I have in a long time. Gp has taken blood for CRP and FBC to rule out sepsis as I was feeling pretty broken as he though my iron levels would not cause these symptoms. I am going to try and get hold of my GI Dr or his sectary tomorrow and go back to the Gp and beg for iron.

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10 hours ago, Kyz1981 said:

Hi I have been given a  working diagnosis of celiac disease TTG 103. I had the endoscopy yesterday and I am awaiting celiac serology ( tests go to a different lab so take longer).

my GI Dr ordered more tests and some have come back odd,

my ferrtain was 9 ( range 20-204)

my folate 4.4 ( range 3.1 - 20.5)

my B12 982 ( range 187-883).

FBC 

mean cell volume 76.9 ( range 80-100)

mean cell haemaglobim 24 ( range 26.9 - 32)

mchc 312 ( range 320- 359).

 

All other results appear to be in the normal range.  My question is the high B12 is odd, has any one else had anemia/ b12 deficiency symtoms whilst having high B12.

 

I went to the Dr as I am feeling awful, dizzy, palpitations and breathlessness and think it's to do with my iron, my gp was beyond useless and thinks it's all due to an infection as I had a temperature of 37.9.

I still feel awful but not Like I have flu awful if that makes sense. I have gone gluten free as I have had the panel and the endoscopy now but feeling so much worse than I have in a long time. Gp has taken blood for CRP and FBC to rule out sepsis as I was feeling pretty broken as he though my iron levels would not cause these symptoms. I am going to try and get hold of my GI Dr or his sectary tomorrow and go back to the Gp and beg for iron.

Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.  

My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.  

Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.  

Be patient.  It can take months, to years to feel good.  But it will happen!  

 

Edited by cyclinglady

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My results were similar – Low ferritin but normal B12.

Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron.

Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.

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5 hours ago, Sugarcube said:

My results were similar – Low ferritin but normal B12.

 

Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron.

 

Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.

 

The OP's hemoglobin levels are below range indicating anemia.  Her ferrtin levels (iron storage) is very low.  Like you, my body processes iron just fine.  It was absorbing it that was my issue due to celiac disease.   This explains it better.

http://www.mayoclinic.org/diseases-conditions/anemia/symptoms-causes/dxc-20183157

Excellent recommendation regarding the Vitamin D.  Other vitamins and minerals should be checked too. 

What was odd, and perhaps you can clarify since you are in GB, can you not purchase iron supplements in a drugstore like Boots?  

 

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Hi. Thanks for the reassurance  re B12. You can get over the counter iron in the UK but it's a much weaker form than you can get on pescription and I have never tolerated tablets well, when I was pregnant I had injections and they helped enormously so that's what I was hoping for from my GP- but alas he did not think my symptoms were related to anaemia, he thought infection. But my bloods have come back today with no increased CRP and fine white cell count so I am almost certain it's anemia and B12 deficiency ( I don't supplement this, and think my body can't absorb it so releases it back in to my blood). I was expecting my B12 to be low which is why I was so suprised at the blood reading.

either that or my gut has a bizarre ability to hold high B12 and low iron which would be unusal. 

I will look at getting my Vit D checked, however have been only stopped taking it about 6 months ago after finishing breastfeeding. 

I am hoping to speak to my consultant who can fax my GP and I can get an injection soon, in the meantime I am taking liquid iron ( spartone ) with vit c as it's easier on the tummy.

its reassuring to know that odd B12 levels can be seen in celiac as I was initially worried having googled high B12.

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Hi Kyz

My blood ferritin was the same as yours.   I was put on heavy duty stuff by the doctor but it hurt so bad, I got terrible diarrhea (mind you, I was still an undiagnosed celiac at the time) and I won't tell you what other horrid symptoms. Once I was diagnosed another GP put me on ferrous gluconate which you can get over the counter.  She told me to take one tablet with water an hour before I ate breakfast.   It worked a treat - much gentler and a little slower to work than the heavy duty stuff, she said, but my stomach didn't hurt anymore. 

Floradix is also pretty good stuff.

I'm sorry if you have tried all this and it didn't work but thought I might just mention it in case.

Now my haemoglobin is high normal they won't let me supplement - seems you just can't win!

All the best

Cristiana

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