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Marlie

Really Confused: Can Anybody Interpret These Tests

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Okay I finally got all the labs for my teen after waiting 6 weeks. I'm really confused and I hope someone is more technical than me.

1) Total IgA 67 (normal range44-441). Is this number low enough to make it harder to fight infections? Is it of concern outside of effecting testing for Celiac?

2) I know other people on board have said my daughter is Celiac if blood positive and biopsy but now that I have biopsy report and it says nothing about Atrophy in hand I'm so confused. Keep in mind she also does not have the genes but they didn't send me this info.

DGP IgG positive with 3.5 since >2.9 ml; DGP IgA positive 4.4 since >1.3 ml

Biopsy result shows 40 T-lymphocytes/100 epithelial cells where >30 is considered intraepithelial lymphocytosis (What does this mean?????) It says duodenal intraepithelial lymphocytosis is non-specific with broad differential diagnosis including celiac disease.

Antigliadin IgA 3.5 normal

Antigliadin IGG 4..4 normal

EMA IgA - negative

TtG IgA - negative .2

3) Most recently was told her iron levels okay but I don't personally have labs. Labs that I do have show low Vitamin D; normal Folic Acid, B12, and Magnesium. Labs from 2 months ago I just got my hands on show Elevated RBCS, chloride and TSH (8.69); low MCH, MCHC, MONO, Eosinophils, creatine, calcium. T4 was normal at 1.36. Doctor ran thyroid again and said it was normal but I don't have that lab. I don't have the reference ranges as these are abbreviated copies from the hospital. Should I worry?

4) Evidently they took biopsys of the stomach and it says excessive mononuclears, neutophilic infiltrates, lymphoid follicles or granulomas. Neither routine or Giemsa stains expose bacteria or H pylori. Does this mean something??????????????

I thought I understood this well until this arrived in the mail and I'm now so confused.

I know the gluten free diet is helping but could anything else be at play as her test results are wacky.

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1) The total IgA is within normal - it's fine for fighting infections.

2) I don't know what DGP is. Intraepithelial lymphocytosis means that there are lots of white blood cells (which tackle infections and also react to inflammation) within the lining of the gut wall. "Intra" means within, the "epithelium" is the gut wall, and "lymphocytes" are white blood cells. They're right when they say that it's non-specific because the white blood cells could be there to fight a bug, as part of active Celiac Disease, or as part of another process all together. Seeing them there doesn't tell you why they're there. The rest of #2 doesn't support a diagnosis of Celiac but doesn't rule it out, either.

3) The elevated RBCs most likely mean dehydration or absolutely nothing at all. But most likely dehydration. She's probably a bit vitamin deficient; starting her on a calcium + D vitamin supplement in addition to an age-appropriate multivitamin would be a good place to start for raising her calcium and vitamin D levels. Don't worry about the things that are elevated because they're either nonspecific or shown later to have been an error (these tests are imperfect, remember). I'd recommend rechecking the thyroid one more time in a bit to make sure it stays with a normal TSH. The TSH is the best test for detecting and monitoring problems with thyroid.

4) No bacteria or H pylori means no infection seen in the biopsies. That's good. The H pylori is a bug that can cause stomach cancer and ulcers, so not seeing it is a good thing. Otherwise it seems to be pretty nonspecific for saying that there are white blood cells in the lining of the stomach as well. That doesn't say a whole lot other than there's probably something going on in the stomach. This could also support the diagnosis of Celiac, but doesn't have to.

Overall, the best evidence you have at this point is that the gluten-free diet is helping. The rest of the results are nonspecific and much less helpful. The only thing I don't understand is the DGP, and googling "DGP" has been similarly unhelpful to me. Is that a typo? Do you have any more information about what that test is?

If the gluten-free diet works, that's enough of an answer to keep her on it. Make sure the calcium + vitamin D supplement you start her on is gluten-free, and get her going on that. Make sure she's active so you know the calcium is being stored in her bones and making her bones stronger.

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From my reading if certain genes HLA-DQ2 & HLA-DQ8 are not present then the trouble is not celiac, but it could be a wheat allergy or wheat intolerance. It looks like the tests for the celiac autoimmune anitbodies, EMA IgA & TtG IgA, were negative also.

Allergic reactions may show up as elevated eosinophils.

Also I ran across this "Increased lymphocyte numbers in the epithelium of architecturally preserved proximal small intestinal biopsies is a morphologic feature associated with a broad differential diagnosis." which I take to mean it could be gluten or something else.

You don't have to be celiac to have trouble with gluten.

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DGP stands for Deamidated Gliadin Peptide and is a new celiac test that is considered quite specific for celiac, just to muddy the picture here. Also, there are genes besides DQ2 and DQ8 that have been associated with celiac, although U.S. doctors don't generally recognize them.

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DGP IgA and IgG are the Deamidiated Gliadin Peptide Tests for Celiac.

Thanks for your interpretation. I just find the results to be so strange compared to most others although Gluten Free is definitely helping.

I am wondering if Strep in your body could do this.

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So if there is no Marsh level notated on biopsy but just those lymphocytes and you are missing the generally accepted genes but have two positive labs are you more likely to be considered Gluten Intolerant or Celiac?

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So if there is no Marsh level notated on biopsy but just those lymphocytes and you are missing the generally accepted genes but have two positive labs are you more likely to be considered Gluten Intolerant or Celiac?

Does it really matter between the two? Either would mean NO GLUTEN.

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Gluten Intolerance and celiac can be triggered by an infection. Lyme Disease is another one that can do it. But the infection is the trigger that results in the body's immune system getting confused and attacking itself when it sees gluten proteins leaking around.

See if you can get a copy of the test for the genes. What does it actually say ?

Are you by any chance descended from Northern European stock, Irish, English, etc ?

Wikipedia currently claiming one percent of celiacs in Europe haven't got the DQ2 or DQ8, but have DQ 1. Of course, gluten intolerant researchers are officially puzzled that they have to come up with some sort of explanation as to why they are not able to explain this yet.

http://en.wikipedia.org/wiki/HLA-DQ1

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So if there is no Marsh level notated on biopsy but just those lymphocytes and you are missing the generally accepted genes but have two positive labs are you more likely to be considered Gluten Intolerant or Celiac?

According to Dr Green, Director of Celiac Disease Center at the Univ of Columbia, in the book "Celiac Disease: The Hidden Epidemic" 2010 : Celiac is about the shape of certain HLA genes. He says "Therefore, in order to get celiac disease, you have to have to have HLA-DQ2 or -DQ8. Genetics are essential in predisposing, but not determining.

He also says that "gluten sensitivity may be much more common than previously thought and in fact be a separate disease entity that involves different organs and different mechanisms than celiac disease."

Many of the symptoms of celiac disease can and do occur in other conditions. If your symptoms improve by eliminating gluten from your diet, then you are "gluten sensitive".

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Does it really matter between the two? Either would mean NO GLUTEN.

Yeah, there are a few of us negative blood test pests around here and they even let us post recipes ! :P

I no longer have idiopathic ("no cause") ataxia, peripheral neuropathy, kidney and liver problems, partial color blindness in one eye, heartburn, severe chronic back pain, not too many migraines. I have no idea if I still have the holes in my brain. At least the arthritis isn't as bad, either, but the c- spine is still a mess, but less so.

Went off the wheat products in 2002....

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It doesn't matter in terms of how you treat it whether its one diagnosis or the other, but I was just curious. The only difference I can see is with insurance purposes. I guess I'm just another scientific type on here who wants to know more than what is known.

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They were supposed to send the genetic testing but it wasn't in the package. It will probably take me another 6 weeks to get my hands on that. We are of Irish, German, English, Swiss, Scottish and American Indian heritage.

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you can still have Celiac without DQ2 & DQ8. they are diagnosing patients in Europe with different genes- and there are members on here with different genes. (Ravenwood has double DQ9 )

and agreed with emilushka? -> it really doesnt matter- which you have- a gluten free diet is still required.

Also ****** her TSH over 8 means she needs to see an Endocrinologist and double checked for Hypothyroid. i say ENDO- because if i had stayed with my PCP who swore she was more than qualified to treat me- i would be in a mental institution or in the ER.. seriously. thank GOD i got a GREAT Endocrinologist who has found that i have BOTH Hashimoto's AND Grave's (autoimmune hypo & hyper)...

anyways-> also BOTH of these conditions can be triggered by and aggravated by gluten/wheat. please get on that- technically the range goes up to 4.5, but anything over 3 is highly suspicious. and yes- her TSH can be that high, with her T4 & T3 in normal range (as were mine).

so, get her checked- and for ALL 3 thyroid antibodies-

and gluten free is recommended for that as well (as well as meds).

and just to give u an idea- my doc got my TSH down from 11.39 to 2.65.. and she wants to get it even lower.

good luck with everything! and get her with a good endo now- no need for her to suffer undiagnosed for years as i did- or end up with horrific hemmohroids like i have

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I was reading about thyroid last night. She's had 3 labs for thyroid and I was told they were all normal. Got my hands on the one from the hospital and the TSH levels were not normal. I guess they go by the T4, if that's normal then you don't have a problem. I've got to get my hands on the other two. Too many times I've been told labs are normal only to find something abnormal. I read anything over 3.5 by new standards on TSH is a problem and it used to be 5.5 for TSH. I think a trip to the endocronologist may be a good idea. Can a hyperthyroid cause shortness of breath or rapid heat beat?

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I was reading about thyroid last night. She's had 3 labs for thyroid and I was told they were all normal. Got my hands on the one from the hospital and the TSH levels were not normal. I guess they go by the T4, if that's normal then you don't have a problem. I've got to get my hands on the other two. Too many times I've been told labs are normal only to find something abnormal. I read anything over 3.5 by new standards on TSH is a problem and it used to be 5.5 for TSH. I think a trip to the endocronologist may be a good idea. Can a hyperthyroid cause shortness of breath or rapid heat beat?

hyperthyroid may cause tachycardia (rapid heart rate) but an elevated TSH

is an indication of hypothyroid...

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I was reading about thyroid last night. She's had 3 labs for thyroid and I was told they were all normal. Got my hands on the one from the hospital and the TSH levels were not normal. I guess they go by the T4, if that's normal then you don't have a problem. I've got to get my hands on the other two. Too many times I've been told labs are normal only to find something abnormal. I read anything over 3.5 by new standards on TSH is a problem and it used to be 5.5 for TSH. I think a trip to the endocronologist may be a good idea. Can a hyperthyroid cause shortness of breath or rapid heat beat?

they actually go by the TSH. and you say hers used to be 5.5? also- i thought in the original post you said her TSH was over 8... which is dangerously high i believe.

actually Shortness of Breath (my BIGGEST symptom over the last 7 years- ) is a symptom mainly of Hypothyroid... but also of Hyperthyroid.

irregular heartbeat CAN be a symptom of Hyperthyroid. altho, i also think as the heart struggles to work under Hypo conditions- it may cause palpitions too...

as soon as i got on meds- my shortness of breath started to improve- i got to a point where it was 60% better, then we changed meds. it can take a while to tweak the medicine just right... and since i have both- it makes it tricky- i sincerely hope your daughter ONLY has Hypo- as it will be easier to treat..

i hope you get her to a good Endo too- ive gotten really lucky- and she really listened to me and agreed to put me on a T4/T3 combo. most women feel better on a combo- as they do not always convert the T4 to T3.. when i was on T4 alone- i actually felt worse (prolly cause of the hyper)

sorrry to blab and blab... hope you get her in soon :)

do U have any thyroid issues? my mom has Hashimoto's.. and my PCP was more agreeable to test me since it was in my family.

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CassP

So you were diagnosed with Graves and Hashmito's with normal T4 and T3 but elevated TSH? I feel like I'm going crazy. Do doctors read labs and its crazy how difficult it is for patients to get them.

Do doctors normally dismiss elevated TSH with normal T4?

My teen was just diagnosed with Asthma but now I'm wondering if its the Thyroid causing it.

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CassP

So you were diagnosed with Graves and Hashmito's with normal T4 and T3 but elevated TSH? I feel like I'm going crazy. Do doctors read labs and its crazy how difficult it is for patients to get them.

Do doctors normally dismiss elevated TSH with normal T4?

My teen was just diagnosed with Asthma but now I'm wondering if its the Thyroid causing it.

it is my understanding- that its textbook for docs to only look at the TSH. (even tho you could have thyroid disease with a normal TSH too).

i was diagnosed with Hypothyroid- because my TSH was 11.39.

i had to BEG my PCP to test for Hashimoto's antibodies. those came back positive (512). i also felt horrific on the Synthroid- like someone had put me on METH- so i had to BEG to go to an Endocrinologist.

my Endo is openminded and loves her job. she added Cytomel to my Synthroid, and even tho it sounded crazy- when i suggest we check for Grave's antibodies just to make sure- she agreed. those came back positive (200 something).

so, they have to test for antibodies to dx either disease. but they'll base "hypothyroid" off the TSH.

based on all of my experiences- with Celiac tests, and my recent missed Vit. D deficiency- you really have to study your results and then be your own patient advocate- they often miss things on the test- seriously.

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they actually go by the TSH. and you say hers used to be 5.5? also- i thought in the original post you said her TSH was over 8... which is dangerously high i believe.

actually Shortness of Breath (my BIGGEST symptom over the last 7 years- ) is a symptom mainly of Hypothyroid... but also of Hyperthyroid.

irregular heartbeat CAN be a symptom of Hyperthyroid. altho, i also think as the heart struggles to work under Hypo conditions- it may cause palpitions too...

as soon as i got on meds- my shortness of breath started to improve- i got to a point where it was 60% better, then we changed meds. it can take a while to tweak the medicine just right... and since i have both- it makes it tricky- i sincerely hope your daughter ONLY has Hypo- as it will be easier to treat..

i hope you get her to a good Endo too- ive gotten really lucky- and she really listened to me and agreed to put me on a T4/T3 combo. most women feel better on a combo- as they do not always convert the T4 to T3.. when i was on T4 alone- i actually felt worse (prolly cause of the hyper)

sorrry to blab and blab... hope you get her in soon :)

do U have any thyroid issues? my mom has Hashimoto's.. and my PCP was more agreeable to test me since it was in my family.

Yes it was over 8. I was mentioning the old standard for normal TSH levels used to be 5 or so and then more recently cut to 3 or so. I'm upset no one mentioned that her TSH numbers were of concern and I find out by getting her labs and doing research on my own.

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Yes it was over 8. I was mentioning the old standard for normal TSH levels used to be 5 or so and then more recently cut to 3 or so. I'm upset no one mentioned that her TSH numbers were of concern and I find out by getting her labs and doing research on my own.

Yes, it is so important to get copies of your lab reports. Things can be missed; an abnormal can be totally overlooked; if they are slightly out of range they are dismissed as normal even (or especially) if they are consistently slightly out of range. It pays to be one's own advocate and do separate investigations of what any abnormalities might mean.

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Yes it was over 8. I was mentioning the old standard for normal TSH levels used to be 5 or so and then more recently cut to 3 or so. I'm upset no one mentioned that her TSH numbers were of concern and I find out by getting her labs and doing research on my own.

well- go get her set up with a good endo- and keep us posted- believe me- if you can save her from years of anxiety and the (qualifiable for surgery) hemmohroids that i suffer from- than she will be thanking you forever!

go get 'em :)

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Can a hyperthyroid cause shortness of breath or rapid heat beat?

Yes, most definitely hyperthyroid can cause these symptoms. Hyperthyroid sends your metabolism into overdrive.

Marilyn

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