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Test Results: 8 Months Gluten-Free


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#1 Katrala

 
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Posted 20 January 2012 - 05:27 PM

So I had my checkup with my GI. My doctor is decent (no bedside manner but knows what he is doing,) but his office staff is horrible. I've spent 2 weeks trying to get the results from my recent follow-up blood work and finally got someone on the phone who told me my most recent results showed "I didn't really have Celiac." I told her I was confused, since the GI had diagnosed me in April of 2011. She said, "Well, everything here is negative, so he must have been wrong."

Sigh.

I'm aware that her understanding of the effects of a gluten-free diet are rather limited.

That being said, I'd like some input on actually understanding my test results, since I finally just said, "I appreciate your help, but could you just mail me a copy of the results from this time and last time?" I wish I had thought at the time to ask for a copy of my endoscopy results, too (which the doctor told me were positive, but I didn't actually see other than a sideways glance at his laptop screen when he was giving me the results.)

Here are my results (my original tests from April 2011 first and my tests from 8 months later next.)

Does the Gliadin Peptide Ab being negative have an impact?

2 different labs and the references are different.

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#2 Skylark

 
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Posted 20 January 2012 - 05:38 PM

Huh? Your results are straightforward. You have celiac disease and the gluten-free diet is working. Your antibodies have dropped to normal now, as a result of being gluten-free for 8 months. That's great news! :) I imagine you're feeling better?
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#3 mushroom

 
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Posted 20 January 2012 - 05:47 PM

I'm aware that her understanding of the effects of a gluten-free diet are rather limited.


Yep, you could say that in bold and italicized and underlined. :blink: :lol:

Well done in bringing your test results down to normal.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#4 Katrala

 
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Posted 20 January 2012 - 05:49 PM

Huh? Your results are straightforward. You have celiac disease and the gluten-free diet is working. Your antibodies have dropped to normal now, as a result of being gluten-free for 8 months. That's great news! :) I imagine you're feeling better?


Does the negative on the Gliadin Peptide Ab, IgA mean anything?

Also - what is "equivocal?"
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#5 mushroom

 
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Posted 20 January 2012 - 06:19 PM

Does the negative on the Gliadin Peptide Ab, IgA mean anything?

Also - what is "equivocal?"


On the first test the negative on the Gliadin Peptide IgA doesn't mean anything. You don't have to test positive on all tests to be celiac. Equivocal means that it could go either way, like maybe, maybe not. Not definitive.

Also, when looking at the results, note that the ranges used on the second test are different from those used on the first test.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#6 Aly1

 
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Posted 21 January 2012 - 05:51 AM

I would send a note to the doc and let him know the staff informed you that you do not have celiac. This is important - imagine someone else with less knowledge being told that - that misinformation could really do some harm and that staff member needs to be educated. The doc is the person to do that, they won't really listen to you...
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#7 Bubba's Mom

 
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Posted 21 January 2012 - 06:02 AM

It looks like you're doing a great job of being gluten-free! It's scary though, that the person you talked to was so mis-informed. What if you had hung up the phone and went to have gluten pizza and beer to celebrate? :o
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#8 sa1937

 
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Posted 21 January 2012 - 06:05 AM

Congrats, Katrala! It looks like you are doing everything right! Way to go!!! :D
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#9 Katrala

 
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Posted 21 January 2012 - 10:36 AM

Which of the 3 tests are the "celiac" antibodies? All of them?

I'm trying to understand what each of the 3 mean independently.

If you look on the bottom right corner of the first one, you'll see "start on gluten-free diet." This was written in January 2011 and I was never called with lab results or told there was anything abnormal. It wasn't until I went back 3 months later that my GI pulled up the labs when I told him I thought I was negative (since I hadn't been called for positive) that he saw the results. I saw that hand-written note on there at that time and it irked me then.
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#10 ravenwoodglass

 
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Posted 21 January 2012 - 10:52 AM

Your doctor needs to have a serious talk with his staff. If you don't have an appointment soon send him a letter (do mark it personal and confidential so the staff doesn't open it and toss it) or ask for a call back from him.
Your doing a great job on the diet. Congrats on getting those numbers into the normal ranges.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#11 Katrala

 
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Posted 21 January 2012 - 03:55 PM

I imagine you're feeling better?


Yeah, I guess I am.

I hear about these people that have these dramatic recoveries.

OMG I've been gluten-free 2 days and I feel like I'm 10 years younger!

That's not me. I have more energy and don't have to take a short nap in the car before driving home so I won't wreck.

I can see that healing has been a gradual process.

I've gained, on average, just under 10 pounds (I lost 70 from August - April before diagnosis.)

Many of the problems that lots of people said would be resolved on a gluten-free diet haven't been resolved for me at all. But they aren't GI-related, just other problems. However, I'm not too narrow-minded to admit that they have nothing to do with celiac at all.
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#12 frieze

 
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Posted 21 January 2012 - 05:35 PM

Office staff, even if he/she were a nurse, has no business giving you that info over the phone. You can ask for and receive your results, but only the doctor is allowed to interpret them. And hope to hades that the doc has a clue!
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#13 Skylark

 
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Posted 21 January 2012 - 10:00 PM

Which of the 3 tests are the "celiac" antibodies? All of them?

I'm trying to understand what each of the 3 mean independently.

If you look on the bottom right corner of the first one, you'll see "start on gluten-free diet." This was written in January 2011 and I was never called with lab results or told there was anything abnormal. It wasn't until I went back 3 months later that my GI pulled up the labs when I told him I thought I was negative (since I hadn't been called for positive) that he saw the results. I saw that hand-written note on there at that time and it irked me then.

Tissue transglutaminase (TTG for short) is an autoimmune antibody. The most common reason for TTG is celiac disease, though it can also appear in other autoimmune diseases and inflammatory bowel diseases. Yours is clearly positive.

Gliadin peptide is short for deamidated gliadin peptide. It is an antibody to gliadin (the part of gluten that makes us sick) that has been processed by the celiac intestine. The IgG is extremely sensitive and highly specific for celiac disease. The IgA version is somewhat less sensitive, which is why yours is not high. "Equivocal" means you have more antibodies than most people the lab tests, but not enough to be certain of celiac if it were your only positive test. In combination with the TTG, where you have a very clear positive, it's an indicator that the TTG is indeed from celiac.

The second round of tests are all well below the cutoff, which is great. It confirms that the TTG was from eating gluten and that you are doing a good job at the diet.

I'm glad you're feeling a little better. Yes, a slow recovery can be frustrating. It can take a while to heal from celiac disease as opposed to gluten intolerance. With gluten intolerance, you remove the irritant and the inflammation goes away. With celiac, there is a bunch of autoimmune damage. You remove the irritant but your body still has to rebuild from all the damage. The rebuilding can take a couple years if the damage was really bad. Without an endoscopy you don't know where you started out.

Has your Dr. tested for B12, folate, iron, and D deficiency? Those are common in celiac and can make you tired. It is very safe to supplement B-complex. A lot of us take 500 or 1000 mcg of B12 sublingual a day because celiac really seems to mess up B12 absorption. Be sure you get methylcobalamin or methyl-B12, which is the form your body uses, not the cheaper and more common cyanocobolamin. I take 2000 IU of D3 a day, but I tested deficient. Fish oil is another wonderful supplement for me - it helps me sleep better and calms my anxiety.

Also make sure your Dr. has run a thyroid panel, and that your TSH is below 2.5. A lot of us have thyroid trouble from the celiac disease and hypothyroid will make you sleepy.
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#14 domesticactivist

 
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Posted 21 January 2012 - 10:22 PM

I hope you will send a letter to your doctor and whoever else should know explaining that these results show that the gluten-free diet is working, not that you don't have celiac! Including a peer-reviewed study should help.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#15 Katrala

 
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Posted 22 January 2012 - 07:11 AM

Tissue transglutaminase (TTG for short) is an autoimmune antibody. The most common reason for TTG is celiac disease, though it can also appear in other autoimmune diseases and inflammatory bowel diseases. Yours is clearly positive.

Gliadin peptide is short for deamidated gliadin peptide. It is an antibody to gliadin (the part of gluten that makes us sick) that has been processed by the celiac intestine. The IgG is extremely sensitive and highly specific for celiac disease. The IgA version is somewhat less sensitive, which is why yours is not high. "Equivocal" means you have more antibodies than most people the lab tests, but not enough to be certain of celiac if it were your only positive test. In combination with the TTG, where you have a very clear positive, it's an indicator that the TTG is indeed from celiac.


This is exactly what I was looking for - thank you! You are very good at wording such things in a way that is understandable to people who aren't familiar with such things.

Without an endoscopy you don't know where you started out.

I had an endoscopy just before going gluten-free. I wish I had thought to ask for a copy of it. Looks like another couple weeks of playing phone tag to try to get it.


Has your Dr. tested for B12, folate, iron, and D deficiency? Those are common in celiac and can make you tired. It is very safe to supplement B-complex. A lot of us take 500 or 1000 mcg of B12 sublingual a day because celiac really seems to mess up B12 absorption. Be sure you get methylcobalamin or methyl-B12, which is the form your body uses, not the cheaper and more common cyanocobolamin. I take 2000 IU of D3 a day, but I tested deficient. Fish oil is another wonderful supplement for me - it helps me sleep better and calms my anxiety.


I had a "CBC with Diff," but I don't see those things specifically. Everything else on the report was under the "normal" column.

Anxiety is definitely a problem for me. I've heard good things about Fish Oil and need to look more into it. Do you know if I need to worry about it interacting with other medications?
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