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Old 04-09-2007, 09:40 PM   #1
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Celiac question

Thyme2b-you have done so much research on celiac that I thought you might have a thought about my situation. I just got lab results showing

Gliadin Ab IgA-negative
Transglut IgA-negative
Endomysial Ab IgA-negative

Gliadin Ab IgG-positive

My D levels and iron are quite low.

Given the above the dr. has ordered a small bowel endoscopy. I have the highest level of confidence in the dr. but I am wondering if you saw anything about negatives on several of the tests with a positive on Gliadin Ab IgG along with the low levels of D and iron?? Also you were making a distinction between celiac and gluten sensitivity- would that be relevant here? Thank you for any thoughts on this situation.

 
Old 04-10-2007, 02:46 PM   #2
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Re: Celiac question

DesertBloom and others- when you had the celiac blood tests did the dr. order the four indicated above or did you have only two of the four like I did when I was first tested about 8 months ago ? The dr. that ordered my first test did not include the gliadins.

Apparently celiac is so much more common than previously thought and celiac does cause bone loss so I am posting this information on my celiac journey in hopes it will help someone else. I have read different figures for incidence of celiac 1in 130 and 1in 200 something. I will have the endoscopy soon. Whatever way it turns out I am very glad my current dr. wants to get to the bottom of my serious bone loss. Even if I do not have celiac, we will have checked it out.

It has been my experience that I have had to be exhaustingly proactive about all of this. Thankfully I have now found an extremely intelligent endocrinologist who is also a real healer- she believes in treating her patients with loving care. I truly feel better already although my situation -very low bone density is the same.

To others out there , don't give up.

 
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Old 04-10-2007, 03:52 PM   #3
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Re: Celiac question

Hi Osteo: I looked at my test again, and I swear this is the most confusing readout I've ever seen. It looks like 3 tests but I'm not sure. One of the tests say's it wasn't performed.

Here it is again:

Endomysial antibody screen (IGA) with reflex to titer endomysial antibody screen (IGA)= Negative

Tnp-Screening test = Negative

Titer not performed

Antigliadin Antibody panel Gliadin Antibody (IGA)= 7

Gliadin Antibody (IGG) = 10

(reference range on both is negative <11 positive >17 U/ml)

I'm glad you like your Dr; hopefully this will take some of the stress off of you, and you can concentrate on getting better instead of double checking how the Dr is treating you and if it's correct, oh and you also get to talk and ask questions!!! I hope you're feeling better, good luck on the diet and endoscopy. Hopefully, with the correct treatment, your score will go way up. Oh I forgot to tell you that I had the 2nd NTx done last week and will get the results of it and the last one, I lost on the 20th and will post it.

Last edited by DesertBloom; 04-10-2007 at 03:54 PM.

 
Old 04-10-2007, 04:15 PM   #4
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Re: Celiac question

I had all of those tests done as well, the only one that came back positive for me was the Gliadin Antibody, I also had very low iron levels that required an iron supplement.

My Dr. said that because I had such an immediate, drastic improvement on the gluten free diet that it was up to me whether or not to do the endoscopy. Since that would mean eating gluten again, I declined. The positive response to my change in diet was good enough for me.

It's been 2 years of eating gluten-free and I feel so much better now, I honestly feel like a new person.

Good luck!
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Old 04-10-2007, 04:51 PM   #5
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Re: Celiac question

DesertBloom-I am glad for you that the celiac test turned out negative. I went back and checked the incidence numbers- at univ of maryland medical site they noted that results of recent research done showed incidence of 1 in 133. That seems like an epidemic. Although to put it in perspective , I heard on the news that 1in3 women will get cancer-that's a plague!I hope I heard wrong. We have got to clean up all the *&#37;&#@ toxins and start eating food that is real food again.

To clear up somethings that we had bouncing around-

my new ca tests both total and ionized came back in range (though high)so dr. and I didn't discuss much ,pth normal, she said she is not concerned now about hypercalcemia or hyperpara

regarding ntx tests -she thinks there are alot of problems with the test and didn't order it. But I sure hope you get encouraging news.

bump on hand nothing too nasty just the ganglion cyst. dr. aspirated and it may come back-if so then surgical removal. But he said this is nothing to get worried about.

I am to maintain on current diet until endoscopy completed.



And you-have you had any news to lighten any of your health concerns . You are such a bright light on this board, you must know we are all rooting for you.

 
Old 04-10-2007, 05:01 PM   #6
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Re: Celiac question

Morrisun- you indicated that you had the same tests and that the only one that came back positive was the gliadin antibody. Could you clarify your response? Of the 4 tests the dr. ordered, 2 were gliadin related:

GliadinAb IgA- I had a negative result
GliadinAb IgG-the one positive I had

You said only one of your results was positive and it was the gliadin-do you know which one it was...IgA or IgG?

In my reading and also what my dr. said -some people can't produce the IgA so they will test negative and just show positive IgG. But also positive IgG may not indicate with certainty celiac.

You said your iron was also low. Did the dr. note any other deficiencies..like vitamin d or k?

Did you have bone loss?

 
Old 04-10-2007, 05:41 PM   #7
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Re: Celiac question

Hi Osteo... Those numbers you mentioned are staggering... I'm glad your ion and total cal came back normal, even if it was on the high side of normal. My Dr feels that if it's within range even being high, then it's still normal, but to watch it. She's happy if the range comes back at .2 below the high end of normal.

My Dr feels the same way about the NTx test, she say's there are a lot of probs with collecting it and processing it, and not to put a whole lot of stock into it. But, she still orders it to see if the forteo is working-go figure. I guess it's like a cursory test.

I hope there's nothing to worry about with the cyst, who aspirated it, was it your new Dr or someone else?

I have had some good news I forgot about for the moment, and that is the 5 cysts/lumps they found during my mamo were retested (spot magnification, and ultrasound) and they came back normal. The last time this happened I had to have the needle biopsy on 6, and those were fibro cystic as well, years ago. The only thing is I'm not real happy with the imaging dept that did the test, but I couldn't get into the regular place I go without having to wait to long. I'll feel better after my gyno looks at the films, since I trust him more than the radiologist. But for now it's good news!!! It had been worrying me because if it had been cancer that would explain the ion cal level. Thanks for asking. Now if someone could just wave a magic wand over me to get rid of this bad pain, I would be happy. Did you ever get the results of you spinal x-rays. You never mentioned if they were precautionary test or had something causing pain, but no need to explain if it's too personal.

 
Old 04-10-2007, 05:50 PM   #8
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Re: Celiac question

Hello Osteoblast,

I'm just checking in for a minute. I will post some lucid information soon which I can't do right now. Right now, I've got the beginnings of a virus and sore throat. I've been working 12 hour days lately, which doesn't help my lucidity.

 
Old 04-10-2007, 09:38 PM   #9
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Re: Celiac question

DesertBloom-Hurray on your great news on the 5 cysts-that has got to be a huge relief. Does the dr. have a reason why you would be forming these cysts?

Is your pain in the back and do they know why? I hope it subsides. I wish there was a magic wand! Have you tried swimming or just being in warm water. Maybe just floating or resting somehow to relax all your muscles. Even if it's not muscular, I wonder if due to various tension about things that maybe some muscular tension would exacerbate a condition?

Regarding the ganglion cyst on my hand-I went to a very good hand surgeon. He operated on my dislocated thumb a year ago. For the cyst,they did several xrays to rule out some growth that might be causing the cyst. After reviewing the xrays he did the aspiration-the synovial fluid is actually released into the tissue-it doesn't come out of the hand. Apparently it is too viscous. But the likelihood is that it will return. I researched and it is standard practice to try aspiration first though.

On the back xrays I was concerned because of pain. But no compression fractures found-I was relieved. Still some pain though.

 
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