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Test Results Are In!

Electra

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Electra Enthusiast
Electra
Posted

Ok well surprise, surprise my B12 is VERY, VERY LOW. My hemoglobin is also low and whatever else they tested in the Celiac Panel is also LOW!! Does anyone know what this means in relation to Celiac. I know that B-12 difficiency is a tell tale sign of Celiac, but the others I have no idea!! AHA I just looked up low Hemoglobin and that points to Anemia another sign of Celiac!!

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ravenwoodglass Mentor
ravenwoodglass
Posted
Ok well surprise, surprise my B12 is VERY, VERY LOW. My hemoglobin is also low and whatever else they tested in the Celiac Panel is also LOW!! Does anyone know what this means in relation to Celiac. I know that B-12 difficiency is a tell tale sign of Celiac, but the others I have no idea!! AHA I just looked up low Hemoglobin and that points to Anemia another sign of Celiac!!

It means your body is not capable of utilizing and absorbing B12. You should go out and get a sublingual B12 supplement, make sure it is gluten free and make sure it is sublingual. Your body will not absorb B12 from just a regular vitamin. This is of course if your doctor has not started B12 injections. The good news is once you replace some of the B12 your energy levels should improve.

Michi8 Contributor
Michi8
Posted
Ok well surprise, surprise my B12 is VERY, VERY LOW. My hemoglobin is also low and whatever else they tested in the Celiac Panel is also LOW!! Does anyone know what this means in relation to Celiac. I know that B-12 difficiency is a tell tale sign of Celiac, but the others I have no idea!! AHA I just looked up low Hemoglobin and that points to Anemia another sign of Celiac!!

While B12 deficiency is one possible symptom/result of celiac, it is not the only possible reason for B12 deficiency. There is some good info on B12 deficiency here, including causes and symptoms:

Open Original Shared Link

Anemia (whether related to iron or B12) can also come from causes other than celiac.

Michelle

Electra Enthusiast
Electra
Posted
  • Author

I've actually had B12 shots before and didn't feel any effects from it what so ever!! I have always had a problem with low iron and low B12, but my B12 has never gotten this low. They want me to come in for more bloodwork, but haven't diagnosed me with anything yet, so I'm still confused lol!!

Electra Enthusiast
Electra
Posted
  • Author

oh and these blood tests are not my only symptoms. My symptoms include but are not limited to......

Constant Gas

Recurrent abdominal bloating and pain

Pale, Foul-smelling Stools

Weight loss/Weight Gain

Fatigue

Anemia

Bone and Joint Pain

Behavioral Changes

Tingling Numbness in Legs

Muscle Cramps

Aphthous Ulcers (mouth ulcers)

Tooth discoloration and loss of enamal

Difficulty Concentrating

Personality Changes

Poor Memory

Acidosis

Abdominal Distention

Appetite Increase to the point of craving

Back Pain

Constipation

Dehydration

I can probably add more if you are doubting that I have Celiac LOL!!

Nantzie Collaborator
Nantzie
Posted

I doubt it's doubt :) , but a lot of us who have been on this board for a long time feel like sometimes we jump the gun when it comes to thinking someone has gluten issues. We try and remind ourselves that not everything is celiac and try not to be too pushy with people who are in the process of figuring it all out. We just don't want to be too pushy or encourage you so much down the celiac path that you don't investigate other possibilities if they're warranted.

I think that anyone who gets to the point where they even find out that celiac even exists and that they have a lot of the symptoms, and finds this message board really needs to investigate the possibility that gluten is their issue. I figure that if you get to the point where you're here, you need to kick off your shoes and stay a while. Some people figure out it's not gluten, some people figure out it's gluten AND something else, and some people, like me, figure out that it's 100% gluten.

Your list looks like my list before I went gluten free. The only thing I did NOT have at all on your list was mouth ulcers. I didn't have the leg tingling, but had other mobility issues. And I'm not sure what acidosis is..? Other than that, I had all of it and then some. The "then some" may be things that you never would have thought to connect to gluten. For me one of the things that I never would have considered a symptom was nightmares and anxiety dreams. Who knew? But now, the only time I get them is if I get glutened.

I also had negative blood tests and a negative biopsy. If it wasn't for me just deciding to go gluten-free on my own, I would still be trying to live in the middle of that list.

My doctors both told me that they have several other patients like me who have negative test, but positive dietary response. They treat me just like they would any other celiac patient. (I have great doctors.) My doctors totally support people trying the gluten-free diet despite test results, and are starting to recommend it as the final "test" for a patient when they're investigating the possibility.

Nancy

Lisa Mentor
Lisa
Posted
I doubt it's doubt :) , but a lot of us who have been on this board for a long time feel like sometimes we jump the gun when it comes to thinking someone has gluten issues. We try and remind ourselves that not everything is celiac and try not to be too pushy with people who are in the process of figuring it all out. We just don't want to be too pushy or encourage you so much down the celiac path that you don't investigate other possibilities if they're warranted.

I think that anyone who gets to the point where they even find out that celiac even exists and that they have a lot of the symptoms, and finds this message board really needs to investigate the possibility that gluten is their issue. I figure that if you get to the point where you're here, you need to kick off your shoes and stay a while. Some people figure out it's not gluten, some people figure out it's gluten AND something else, and some people, like me, figure out that it's 100% gluten.

Your list looks like my list before I went gluten free. The only thing I did NOT have at all on your list was mouth ulcers. I didn't have the leg tingling, but had other mobility issues. And I'm not sure what acidosis is..? Other than that, I had all of it and then some. The "then some" may be things that you never would have thought to connect to gluten. For me one of the things that I never would have considered a symptom was nightmares and anxiety dreams. Who knew? But now, the only time I get them is if I get glutened.

I also had negative blood tests and a negative biopsy. If it wasn't for me just deciding to go gluten-free on my own, I would still be trying to live in the middle of that list.

My doctors both told me that they have several other patients like me who have negative test, but positive dietary response. They treat me just like they would any other celiac patient. (I have great doctors.) My doctors totally support people trying the gluten-free diet despite test results, and are starting to recommend it as the final "test" for a patient when they're investigating the possibility.

Nancy

Nancy:

I think that you have made some wonderful points and very well said!

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rgeelan Apprentice
rgeelan
Posted

That list looks almost exactly like my symptoms and I am so sick of feeling this way! I know there are many possible reasons for these symptoms but it never hurts to rule out Celiac as one of them... I am unsure what the celiac panel being low means. With my son's diagnosis his levels were high...

Have you considered asking to have a biopsy done?

Good luck...

Michi8 Contributor
Michi8
Posted
I can probably add more if you are doubting that I have Celiac LOL!!

I'm not doubting anything, just going by the way you have worded your messages...I want to make sure that you look at all the possible health issues/diagnoses before settling on celiac being the answer.

I, too, have a long list of symptoms and am trying to figure out if it is gluten, or something else, that is causing my health issues. Every test I do seems to come back normal, but I know that something is amiss. I've had the celiac panel done: normal. I've had the endoscopy: still awaiting results, but the dr didn't take enough biopsy samples, so a neg may just be inconclusive. I'm trying the diet: too early to tell if it helps yet. Based on my many symptoms, I'll be doing further testing for thyroid issues as well as checking to see if my ferritin levels have risen. I "can't" have B12 deficiency, because I'm allergic to the supplement (cobalt)...so I wouldn't be able to safely take treatment. And I have a colonoscopy scheduled for March next year.

On top of that I have three children with different health issues that I believe are related to diet, and am working through the process of figuring that out. To know definitively that I am or am not celiac would help a lot, but I don't think it will be a clear answer for me...so I'll keep stumbling through.

Michelle :)

Electra Enthusiast
Electra
Posted
  • Author

I didn't mean to make it sound like anyone was doubting that I have Celiac or that I am sure I have it lol!! I threw that comment in as humor, but It probaby sounded kind of "psarchastic and snappy" and the way I wanted it to sound was like I was making a joke because I'm SURELY not convinced that I do or do not have Celiac, so how could I expect anyone else to figure it out especially since I'm such a mess ;-)!! A diagnosis would definitely be good just so that there is no question, but it seems as though that doesn't happen for many of you, so I'm sure I'll be sticking around and having all of you help guide me through this process. It's so good to know that there are people out there that understand that we aren't "MAKING UP" symptoms. I have real pain and I just want to know what it's caused by!! Thanks everyone for being so very supportive and informative. I'm not sure I would be dealing with this so well if I didn't have the knowledge and information of this board to help me along!!

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