Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Blood results - odd


Kyz1981

Recommended Posts

Kyz1981 Newbie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master
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!  

 

Sugarcube Rookie

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.

cyclinglady Grand Master
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.

Open Original Shared Link

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?  

 

Kyz1981 Newbie

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.

cristiana Veteran

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

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,039
    • Most Online (within 30 mins)
      7,748

    Val70
    Newest Member
    Val70
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.