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Confused.... A Little Frustrated


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#1 nineof9

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Posted 04 January 2013 - 03:27 PM

I could use some input from people who have some experience. I recently got tests back that were a little bit more frustrating than I thought. I tested mildly positive a week ago on the celiac panel for Gliadin Igg Transglutaminase with a result of 22 (Ref. is <20) and negative for both EMA and Ttg Iga. Other notable findings:
Triglycerides: 150 (high) (ref. <150)
HCT: 38.7 (low) (ref. 39.2-52.5)

My doctor emailed me back and said that she was suspicious and was willing to go forward with a GI consult and endoscopy. She ordered more tests, and I requested a total serum Iga since it was not part of the panel with these results:
Iron: 99 (Ref. 45-150)
IgA Serum: 88 (Ref. 70-300) seems on the lower end to me... but is "normal"
Folic Acid: 16.33 (Ref. > 5.38)
Vit B12: 427 (Ref. 211-911)

Clearly from these labs I am not malnourished and am sitting here scratching my head. I thought I was IgA deficient since when I was a kid I had chronic sinus infections that led to the removal of my tonsils and adenoids. However, my IgA levels are "normal" even though they are on the lower side. Other than the symptoms that I have, I am a healthy mid-twenties male.

Another very interesting thing to note is that my sister and my first cousin both have celiac disease as well as my uncle who is blood related. There are a lot of thyroid issues in my family as well. My symptoms are foggy headedness, intense anxiety at times, slight anemia. I have a feeling that I may not have celiac based off of these test results. My doctor said she was willing to move forward with a GI and endoscopy but I was hoping for something more substantial to hold on to before that.

The problem lies in the fact that I have a MAJOR exam coming up at the end of the month for which I constantly get anxiety. I want to go gluten free before this to see if it helps with my concentration (I can read a page and sometimes forget what I read, which is eternally frustrating.) My plan is to go gluten free from now until the test and then go back on gluten for a few months for an endoscopy (I know this is crazy but my future pretty much rests on this and I cannot mess it up).

Any advice would be greatly appreciated. Thanks in advance and God Bless.
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#2 nvsmom

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Posted 04 January 2013 - 04:12 PM

That's frustrating when the tests aren't absolutely clear. Something is going on with your slight positive result, and chances are it is celiac, but I understand your frustration with wanting to know "for sure".

If you do go gluten free before your test, be aware that some of us go through a withdrawl of sorts. Mine included a migraine that lasted for days, a lot of grumpiness, and feeling extra tired for about two weeks... I'm not sure if that would work in your favour when it comes to studying.

Many don't go through any withdrawl but there is a chance it could hit; if you do go gluten-free, I would do it as soon as possible so the withdrawl is done before February..

Have you been gluten-free in the past so you know going gluten-free will alleviate your fogginess? For some it happens quickly and for others it takes quite some time for it to improve. At 6 months in, I haven't noticed a huge difference but fogginess wasn't a huge symptom for me either. I've heard others have improved within days.

Either way, I wish you the best. And good luck on your exam!
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#3 Marilyn R

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Posted 04 January 2013 - 06:53 PM

My endocrinologist says the blood tests (for celiac) are not reliable. He's a really good doctor.
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#4 GottaSki

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Posted 04 January 2013 - 09:05 PM

I'm firmly planted in the "positive is positive" camp -- because I was "weakly" and "mildly" positive with total villi atrophy - my kids and grands all test negative except for one DGP - we all have Celiac Disease and our lives have been greatly improved removing gluten.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#5 Ollie's Mom

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Posted 05 January 2013 - 08:34 AM

My endocrinologist says the blood tests (for celiac) are not reliable. He's a really good doctor.


Not reliable in what way? I believe in the unreliable due to false negatives, not false positives (especially when celiac runs in the family and/or the positive result is on a celiac specific parameter)
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#6 nvsmom

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Posted 05 January 2013 - 01:41 PM

My endocrinologist says the blood tests (for celiac) are not reliable. He's a really good doctor.


Hmm. I respectfully disagree. There is a chance (about 25%) of getting a false negative, but false positives are very rare, especially is you test positive on two or more of the blood tests.
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