Looking For Advice/input. I Think I Have Celiac, But I Can't Say For Sure.

[Nic38]

I called the doctor's office that performed my blood test and asked for a copy of the lab results. The lady I talked to said they would have to call me back. They did. I asked her to send me a copy for my records. There was a lot of him hawing around and she finally said I was scheduled to come back to see the doctor for a consultation. I said, "Yeah, I know, but you called already and said the test was negative." I then asked what the actual numbers were. She was able to quote me numbers. She said the B12 levels were slightly elevated. The number she gave was 2000. She said the folate level was 20. She said that was normal. She said I would have to call back next week because the report is in limbo because it is sent somewhere to be entered into my profile. I could tell she did not want to send me the report. I'm calling back next week anyway.

Having too much B12? I don't know what that means, other than I'm getting plenty.

I've been thinking about the mold today. I have my doubts about that. I have not had any respiratory problems. The carpet was dry when I pulled it up, although musty where the mat was. I just don't want to leave any stone unturned.

The only other thing I can think of is I have not had my Thyroid checked. My sister told me I have a couple of cousins with thyroid issues. She also said my Grandmother had Thyroid cancer, which I never knew.

I cut the grass today. I have a part of my yard that I have to push mow. It takes about 45 minutes to cut. It wore me out. I may have improved some, but I'm still having problems obviously. I was drenched in sweat when I was done, my shirt was soaked. It was 90ish today, but I shouldn't have sweated that bad.

[Mother of Jibril]

She said the folate level was 20.

That's a pretty low level. When was the last time you had a CBC? With a level that low you might also have iron-deficiency anemia... ferritin is the storage form of iron (and you're pretty much depleted).

[lizard00]

Yeah, I would agree with getting a CBC, along with a check for vitamin D and your thyroid checked, if you haven't already. I had severe fatigue initially, and started with sublingual b12. But, it wasn't until I started vit D that I noticed my health improved by leaps and bounds.

I didn't read where you were tested for Celiac (gotta admit, some of the posts were long so I skimmed... ). Without getting too far into the gluten-free diet, have them do that, too. (While they're taking your blood, you might as well have them run it).

And yes, if you are in the US, (I don't know other countries laws) don't let them yank you around. They are required to give you copies of your records. Tell them you will come in to pick them up at xx time on xx day.

Anyway, hope you get to the bottom of it soon!!

[BigDogz]

That's a pretty low level. When was the last time you had a CBC? With a level that low you might also have iron-deficiency anemia... ferritin is the storage form of iron (and you're pretty much depleted).

Mother of Jibril...

Where are you getting the levels that you're basing your comment on? Are they US units or SI units (Syst

[Mother of Jibril]

Mother of Jibril...

Where are you getting the levels that you're basing your comment on? Are they US units or SI units (Syst

[BigDogz]

Ah... good question!

Labs in the US use either "nanograms per milliliter" or "micrograms per liter," but the numbers are the same (Open Original Shared Link). Although the ranges can vary a bit from lab to lab, I've read that people start to experience symptoms (like fatigue) on the low end of normal... and 20 is definitely on the low end of normal.

MOJ...

Ok, I think I see just why it is that you and I are not viewing these labs in the same light...and it has nothing to do with reporting methods. Nic38 is telling us that his FOLATE level is 20. You are looking at the lab values for FERRITIN. They are two very different substances.

Ferritin is an iron-binding protein...meaning that it attaches itself to iron molecules. Most of the iron in the body is bound to ferritin so a low level of ferritin corresponds to a low level of iron. Low levels of iron will often lead to anemia if allowed to remain low long enough. A high level of ferritin in the blood signifies that there's too much iron in the body - a condition called hemochromatosis.

Folate (or folic acid), on the other hand, is one of the B vitamins, B9 to be exact. There's very little difference between folate and folic acid - folate is the version of B9 that is available to the body from whole, natural foods. Folic acid is the synthetic version of B9 that's used in vitamin supplements and as a fortifying vitamin mixed in commercially prepared foods. Either version is used by the body for cell growth and metabolism.

[Nic38]

Ah... good question!

Labs in the US use either "nanograms per milliliter" or "micrograms per liter," but the numbers are the same (Open Original Shared Link). Although the ranges can vary a bit from lab to lab, I've read that people start to experience symptoms (like fatigue) on the low end of normal... and 20 is definitely on the low end of normal.

The lady said all the levels were normal. I'm new to all this, so I had to take her word for the most part. I did a little reading on elevated levels of B12. Apparently, that can be a sign of problems as well-liver disease being one of them. I'm not going to jump to conclusions though, and may even ask for a retest somewhere else. Labs can get things wrong.

I have decided that I will schedule another visit with a doctor, although I said I would not. Before I go though, I will have a list of things I want them to check.

[Mother of Jibril]

Ok, I think I see just why it is that you and I are not viewing these labs in the same light...and it has nothing to do with reporting methods. Nic38 is telling us that his FOLATE level is 20. You are looking at the lab values for FERRITIN. They are two very different substances.

You're absolutely right. Good thing you were paying attention.

So... Nic38... ignore the advice about ferritin Unfortunately I don't know anything about folate beyond the fact that it prevents certain birth defects in fetuses.

[BigDogz]

The lady said all the levels were normal. I'm new to all this, so I had to take her word for the most part. I did a little reading on elevated levels of B12. Apparently, that can be a sign of problems as well-liver disease being one of them. I'm not going to jump to conclusions though, and may even ask for a retest somewhere else. Labs can get things wrong.

I have decided that I will schedule another visit with a doctor, although I said I would not. Before I go though, I will have a list of things I want them to check.

Nic38...

I wouldn't get too uptight about the raised B12 level. Not only are you taking a complete vitamin with B12 in it, you also said that you were taking extra sublingual B12 tablets "like tic tacs". That could certainly account for the high B12...especially if you took them within a few hours of having your blood levels drawn. You would most certainly have a higher concentration of B12 circulating in your blood if your last dose of vitamin and B12 tablets was, say, 3 hours before the blood test as opposed to a last dose 24 hours prior, or 36 or 48 hours, etc.

As much disdain as I have for doctors who are closed-minded and dismissive, I really DO applaud your decision to see a doctor again...although I probably would have looked for someone other than the cheeseball you've been seeing. There really are a multitude of different possibilities for your symptoms, Celiac being just one of them, and you need someone to help you sort through all of them so that you don't miss something significant. You also need to be very careful, too, about self-treating prior to getting testing as you might do something that skews a result and makes it look like you weren't having a problem when you really were. A perfect example of that is going gluten-free prior to getting the bloodtesting for Celiac completed. Doing so can make it appear as though you aren't producing antibodies when, in fact, you were when you were still consuming gluten.

I would also still encourage you to get the genetic mouth swab testing for Celiac Disease. If you don't possess the genes necessary for Celiac or gluten-sensitivity, then you can stop looking in that direction and move on to something else. If you DO carry the genes, it might help you and your doc to narrow things down to a more efficient search for answers.

[Nic38]

Nic38...

I wouldn't get too uptight about the raised B12 level. Not only are you taking a complete vitamin with B12 in it, you also said that you were taking extra sublingual B12 tablets "like tic tacs". That could certainly account for the high B12...especially if you took them within a few hours of having your blood levels drawn. You would most certainly have a higher concentration of B12 circulating in your blood if your last dose of vitamin and B12 tablets was, say, 3 hours before the blood test as opposed to a last dose 24 hours prior, or 36 or 48 hours, etc.

As much disdain as I have for doctors who are closed-minded and dismissive, I really DO applaud your decision to see a doctor again...although I probably would have looked for someone other than the cheeseball you've been seeing. There really are a multitude of different possibilities for your symptoms, Celiac being just one of them, and you need someone to help you sort through all of them so that you don't miss something significant. You also need to be very careful, too, about self-treating prior to getting testing as you might do something that skews a result and makes it look like you weren't having a problem when you really were. A perfect example of that is going gluten-free prior to getting the bloodtesting for Celiac completed. Doing so can make it appear as though you aren't producing antibodies when, in fact, you were when you were still consuming gluten.

I would also still encourage you to get the genetic mouth swab testing for Celiac Disease. If you don't possess the genes necessary for Celiac or gluten-sensitivity, then you can stop looking in that direction and move on to something else. If you DO carry the genes, it might help you and your doc to narrow things down to a more efficient search for answers.

I had the blood test before I bought the sublinguals, so that is why I was a little confused. Although, I was taking the regular pills some. I think I did not take any B12 a day or two before my appointment though. I know it was at least 36 hours or so.

I plan to go back to another doctor. The dermatologist I went to recommended someone he knew and said he was top notch and the smartest doctor he ever knew. I may try him. I will reserve judgment until then. Maybe he doesn't know many other doctors.

I will ask him about the genetic testing. Supposedly, the first time I had blood taken, they tested for gluten allergies. Is that a very definitive test? I think I have already said in an earlier post, but, I was off gluten a few days prior to that. But, I was still feeling pretty rough at the time.

Also, I am feeling better as well, kinda like my old self is coming back. I have a clearer head and my old way of thinking is returning. That can't be proven, but the physical can. The dermatitis on my face is pretty much gone. There is no flaking on my nose or upper lip. I have not used anything on it other than some Blue Star ointment I had. That stuff will kill almost anything though. I was to pick up a prescription (faxed by the dermatologist) at a drugstore. They said they didn't get one, and I never went back. Other things seem better as well. I'm not having an upset stomach or sudden bathroom trips.

I may have consumed some gluten today, but I don't think so. I went to a barbeque place today and had some baked beans, potato salad, and turkey with vinegar sauce. I'm not sure if the side dishes had gluten in it, but I read that some vinegars may have gluten. I didn't ask them anything about gluten. I would have just gotten a blank stare. My stomach does seem to be a little fussy, but not bad really.

I hope I continue to improve even if I never find out how I got the way I did. I definitely want to avoid reverting back, so that's why I want to know now. I just find it funny that the only thing I have really done is go off gluten and take the B12. I also find it odd that I know no one in my family that has anything like this. I don't know of anyone with Celiac. I still have to get a thyroid check too I guess, since that is somewhat common on one side of my family.

Thanks again.