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B12


frustratedandtired

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frustratedandtired Rookie

I am still in the process of having all the testing done. The dr told me when I went in for my EGD that my diagnosis is Crohn's or Celiac. They messed up the Celiac test so I have to have it redone but I guess other test were able to be done. He said I have extremely low B12 and LARGE red blood cells. Not sure what that means but I guess he will tell me when I go back in 2 weeks. Is it common to have low B12 with Celiac? I'm sorry if my questions sound silly. I am beginning this journey and need all the information I can get.


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psawyer Proficient

B12 deficiency is common in celiac disease.

mushroom Proficient

I had low B12, and I also had oversized red blood cells.

georgie Enthusiast

I had low B12 when dxed. After 3 years I still need weekly B12 injections.

Ahorsesoul Enthusiast

I also do weekly B12 shots.

mommida Enthusiast

Pernicious anemia is associated with Celiac disease. If your gut lacks the intrinsic factor needed to process vitamin B12. Early symptoms would be a B12 deficiency and enlarged red blood cells.

frustratedandtired Rookie

Thank you for your replies. I do believe Celiac will be my diagnosis and not Crohns. It has been a long road to get to this point.


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tanthony15 Newbie

Hi all,

I recieved my blood test information about 3 weeks ago. I tested positive for Celicac's and was shown to have extremely low B12, elevated gluten and im anemic. They said this test was 95-98% accurate, but I go for a biopsy in 3 weeks where they will do an endoscopy and colonoscopy to get the official diagnosis. Has anyone had this biopsy done, and if so how was it, I am a little nervous!

Thanks

Wolicki Enthusiast

It is rare to have a false positive blood test. Especially with low nutrient levels. I think you can safely call yourself Celiac. The biopsy is pretty simple and you won't remember it. They give you an amnesiac to take care of that. You go to sleep, you wake up. You might have a bit of a sore throat.

There are like 35 ft of intestines, and docs take 6 samples for Celiac. Even if you have a negative biopsy, you should go gluten free.

good luck and stick around here. Lots of helpful people!

Janie

Ahorsesoul Enthusiast

They said this test was 95-98% accurate, but I go for a biopsy in 3 weeks where they will do an endoscopy and colonoscopy to get the official diagnosis. Has anyone had this biopsy done, and if so how was it, I am a little nervous!Thanks

Nothing to it. They have great mediation now. You won't mind at all. Some people feel a little discomfort the day after but nothing that should keep you home from work. My dh wanted to go shopping straight from having the test done. When I took my bf we went to lunch right afterwards. Be sure to keep eating gluten until your testing is done. Let us know how it goes and the results.

  • 8 years later...
Michele Barlow Newbie

Is it possible to have enlarged red blood cells, B12 deficient, BUT high iron???? 

Ennis-TX Grand Master
3 hours ago, Michele Barlow said:

Is it possible to have enlarged red blood cells, B12 deficient, BUT high iron???? 

Do you have Hemochromatosis? I have a customer at my bakery that has this, along with NCGS, and a T1, but was never tested for celiac before going gluten free so that is unconfirmed. They did have the low B-vitamins and low vitamin D.

Have you been tested for Celiac disease?

Second thought since your issues is a bit different perhaps you should start a new topic and see if it can be addressed properly.

plumbago Experienced
5 hours ago, Michele Barlow said:

Is it possible to have enlarged red blood cells, B12 deficient, BUT high iron???? 

Yes. B12 deficiency is the reason your red blood cells are enlarged (macrocytic anemia).

"High iron" can occur in liver disease and probably with other things, too, such as a type of thalassemia. I am no expert on either one, and I'm not sure why you are asking the question, reviving a topic from 8 years ago?

Iron and anemia are very complicated subjects. If considering iron deficiency as a cause (it isn't always, with anemia) it is important to ask: is the iron deficiency producing the overall anemia or is the anemia causing the iron deficiency?

Source for the above question: Vernon Louw (youtube)

It's easy for me to scramble my own brain thinking about this. Always ask: what is the source? That is the starting point.

Plumbago

frieze Community Regular

yes, start your own topic.  Macrocytic anemis, IS B 12 def anemia.

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    • lalan45
      You’re not crazy—some people have severe neurological and physical reactions to gluten, not just digestive issues. While testing can be tricky without eating gluten, documenting symptoms and seeing a specialist familiar with atypical celiac or gluten-related disorders can help. Your reactions are real, and it’s valid to be cautious.
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      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
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