PLEASE HELP - Blood test results

[annies433]

Hi!! I'm so glad I found this website!! I have been convinced I had problems with gluten since the winter of last year. I am nearly always bloated, as long as I can remember I eat a ton of carbs and would only poop 1-2 times a week and I always clogged the toilet. Last year in the winter my hair started falling out, out of nowhere. I freaked out and changed my shampoo, conditioner, haircare treatment and stopped using heat. I also went completely gluten free. The hair loss stopped and I was going to the bathroom regularly, feeling lighter and just amazing. Near the end of this past summer I started eating gluten again and since Ive been to college I have been eating gluten regularly. Low and behold, my hair has been falling out more than it ever has!!! It started again in august and I have now lost most of the thickness of my hair. Every time I touch it, more comes out. I still treat my hair amazingly, as I have since last winter. the only thing that has changed lately is my diet. Since it got SO bad I've been to the doctor for some blood tests but he doesn't explain anything to me and seems to brush off any symptoms I give him. I'm an 18 year old girl.

So we did some testing a few months ago, and then some testing recently.

Can anyone PLEASE help me interpret these results?? All of the pictures are attached and the dates are next to the results, but I'm not sure what order they will appear in.

Any help would be appreciated!!!!

Annie

 

[RMJ]

The second column (first column of numbers) is your results.  The third column (second column of numbers) is the normal range.  Your results for celiac are negative.  But you still could be sensitive to gluten (non celiac gluten sensiticity), there is no accurate blood test for that.

[squirmingitch]

Annie, I see the celiac panel was done on Nov. 2, 2016. Had you been eating the gluten equivalent of a slice of bread each day for 12 weeks prior to that?

If the answer is yes, then your celiac panel would not be falsely negative. 

You could be NCGS (non celiac gluten sensitivity). As RMJ stated, there is no test for that. From what you say, it's pretty clear that you must have a problem with gluten since everything straightened up when you were off it. People with NCGS still have to follow a strict gluten free diet just as if they had celiac. We don't know yet, what long term effects or damage NCGS does to people so you need to take it very seriously.

[annies433]

18 minutes ago, squirmingitch said:

Annie, I see the celiac panel was done on Nov. 2, 2016. Had you been eating the gluten equivalent of a slice of bread each day for 12 weeks prior to that?

If the answer is yes, then your celiac panel would not be falsely negative. 

You could be NCGS (non celiac gluten sensitivity). As RMJ stated, there is no test for that. From what you say, it's pretty clear that you must have a problem with gluten since everything straightened up when you were off it. People with NCGS still have to follow a strict gluten free diet just as if they had celiac. We don't know yet, what long term effects or damage NCGS does to people so you need to take it very seriously.

No, I don't think I've had gluten that consistently, not to the point where I can positively say I had the gluten equivalent of a slice of bread each day for 12 weeks.

So how would I know if I do have NCGS? Just because I felt so much better when I wasn't eating gluten? 

And I see that there's no test for that, I don't know much about the testing for celiac but I just assumed that any sort of gluten sensitivity would show up in those blood results. 

Thank you so much for the feedback!!!!

[emma6]

did your doctor mention anything about high ESR? i don't know much about that just that it indicates inflammation.

also maybe get your iron levels checked if you haven't recently, i had hair loss from low iron and low vitamin d

your not vitamin d deficient, but the normal ranges seem to vary between labs, on the results i had anything below 50ng/ml was considered low. so i would say 32ng/ml is not deficient but still on the lower side of the normal range.

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[squirmingitch]

You had the full, current celiac panel done. That's the one titled Celiac Disease Antibody Profile. Here's some info. on that.:

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Once in a while a person will be what's called sero negative which means they test negative on the blood work but actually do have celiac but that doesn't happen very often.

Then there's the factor that you had been gluten free & then went back to eating gluten but not every day for 12 weeks. That could cause the celiac blood work to be falsely negative. You see, it takes time for the antibodies to build up in the blood stream. That is called a gluten challenge. The Chicago Celiac Disease Center recommends 12 weeks of gluten eating when doing a gluten challenge. See:

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You could have a genetic test to see if you carry the genetics for celiac. If you do, that doesn't prove you have celiac, b/c 1/3 of the population carries the gene(s). That is generally used more to rule out celiac than to prove it.

Your Vitamin D is brushing the low side of normal there. You could get your B-12 tested and your iron. With celiacs, they often are low in one or more of those.

You could have an endoscopy with biopsies for celiac but without the positive blood work, you may have an extremely hard time getting your doctor to do that not to mention your insurance company.

As far as NCGS goes, since there is no test for it, then it's really a matter of testing yourself which you've already done. If you were to go back to eating gluten free & once again your symptoms resolve then you can answer your own question.

[annies433]

2 minutes ago, emma6 said:

did your doctor mention anything about high ESR? i don't know much about that just that it indicates inflammation.

also maybe get your iron levels checked if you haven't recently, i had hair loss from low iron and low vitamin d

your not vitamin d deficient, but the normal ranges seem to vary between labs, on the results i had anything below 50ng/ml was considered low. so i would say 32ng/ml is not deficient but still on the lower side of the normal range.

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Thanks!! I have asked him and all he says is it that it can indicate inflammation Which is useless to me

That's what I thought so I got a vitamin D supplement yesterday. I've been taking Biotin since the winter but I've just started taking more. I have no idea what my iron levels are, but I take a daily multivitamin.. do you think I still should?

Thanks!!!

[annies433]

1 minute ago, squirmingitch said:

You had the full, current celiac panel done. That's the one titled Celiac Disease Antibody Profile. Here's some info. on that.:

Open Original Shared Link

Once in a while a person will be what's called sero negative which means they test negative on the blood work but actually do have celiac but that doesn't happen very often.

Then there's the factor that you had been gluten free & then went back to eating gluten but not every day for 12 weeks. That could cause the celiac blood work to be falsely negative. You see, it takes time for the antibodies to build up in the blood stream. That is called a gluten challenge. The Chicago Celiac Disease Center recommends 12 weeks of gluten eating when doing a gluten challenge. See:

Open Original Shared Link

You could have a genetic test to see if you carry the genetics for celiac. If you do, that doesn't prove you have celiac, b/c 1/3 of the population carries the gene(s). That is generally used more to rule out celiac than to prove it.

Your Vitamin D is brushing the low side of normal there. You could get your B-12 tested and your iron. With celiacs, they often are low in one or more of those.

You could have an endoscopy with biopsies for celiac but without the positive blood work, you may have an extremely hard time getting your doctor to do that not to mention your insurance company.

As far as NCGS goes, since there is no test for it, then it's really a matter of testing yourself which you've already done. If you were to go back to eating gluten free & once again your symptoms resolve then you can answer your own question.

I see. Do you think I should try that gluten challenge? Or should I just go gluten free instead?

I just got a vitamin D supplement and I take a vitamin B complex to insure i get enough B12 since I don't eat very much meat. I'm not sure what my iron levels are, though.

My doctor was so reluctant to do the celiac panel I really don't think I could convince him to do anything more along those lines.

Thank you so much for being so helpful!!!

[emma6]

30 minutes ago, annies433 said:

That's what I thought so I got a vitamin D supplement yesterday. I've been taking Biotin since the winter but I've just started taking more. I have no idea what my iron levels are, but I take a daily multivitamin.. do you think I still should?

Thanks!!!

yeah most multivitamins only have very small amounts of iron so its definitely possible to have low iron even if you are taking supplements. its also possible for it to be low while eating a lot of iron rich foods or without having anemia.

or your levels could be completely normal but since you have hairless i would get it checked and then if they are in the normal range at least you can rule it out.

[squirmingitch]

It's really up to you Annie as to doing a gluten challenge or not. The big question is whether your doc would agree to re-order the tests in 12 weeks.

I agree with Emma that you need to get your iron & B-12 levels checked.

If you do decide to just go gluten free than like i said, you have to go all the way, strict, no cheating, no cross contamination. You would need to make sure your supplements were gluten free also. Check out our Newbie 101 thread pinned to the top of the Coping section for details.

BTW, kale greens are a veritable powerhouse of nutrition.

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[plumbago]

Hi there,

You should follow up with your doctor and/or ask for a referral to a gastroenterologist. Someone knowledgeable, with time and curiosity needs to take a look at your labs. As a commenter pointed out, you have a high sedimentation rate (ESR), which as you pointed out, can indicate inflammation. So that's the first part of the sentence, what's the second? You should pursue it with your provider - bring a friend/advocate or a parent. Your BUN - blood urea nitrogen - is also low, which may or may not be meaningful, probably would need to retest.

It sounds like eating gluten is a problem for you, but you are confused bc the celiac panel came back negative. Would it be worth it to have a genetic test? I put that question out there to the other commenters, because I really do not know.

(It looks like your D3 levels are fine, according to the blood test you had done.) It's always good to know your iron and B12 levels.

Good luck.

 

Edit to add: if you were not regularly consuming gluten before your tests, they may have given you a false negative.

[Anda25]

In  Germany there is a analysis named LTT gluten who verified sensivity to gluten.