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    Do you have questions about celiac disease or the gluten-free diet?

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Nurse called and said negative on celiac disease. So back to the drawingboard, again. So much for having my answer finaly... :(

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Sorry you didn't find the answer you were hoping for. :(

Must be frustrating not knowing....if gluten is causing you trouble though you should stay off of it...even if it is not celiac.

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frustrating...sorry...

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Which tests did you have done? You could be intolerant to gluten.

The only one my doc says ins will pay for ... I have to get the fax tommorow when Im in the office, but I think its the tGA or somthing like that.

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I agree with the comments thus far. Though I'd say it is great news that you don't have celiac disease. Just don't confuse celiac disease with gluten intolerance. You are getting possitive results from a gluten-free diet, right? This can certainly mean that you have the intolerance, but your system has not taken sufficiant damage yet, which again is great news.

From all the posts I've seen on this, improvement after going gluten-free is the absolute best diagnosis. I myself have no plans whatsoever to seek a doctor's diagnosis. After years of suffering I finally found something that helps. I'm sticking with it.

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I have to get the fax tommorow when Im in the office, but I think its the tGA or somthing like that.
The tTg test only tests for IGA antibodies and there are about 10-20% of celiacs that don't produce those antibodies, so test results can be false negative. Maybe you could ask for the IgG celiac blood test? Just thought this may be something that you might want to look into.

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I agree with the comments thus far. Though I'd say it is great news that you don't have celiac disease. Just don't confuse celiac disease with gluten intolerance. You are getting possitive results from a gluten-free diet, right? This can certainly mean that you have the intolerance, but your system has not taken sufficiant damage yet, which again is great news.

From all the posts I've seen on this, improvement after going gluten-free is the absolute best diagnosis. I myself have no plans whatsoever to seek a doctor's diagnosis. After years of suffering I finally found something that helps. I'm sticking with it.

No I did not see any dramitc postive when I went gluten-free, but I though I saw dramtic negative when I went back on gluten. I worried it was the placbo effect (Im looking so hard for an answer, I make on..) so I wanted the objective blood test as a measure. I will stay gluten-free mainly because of my son who does have postive blood work, just makes it eaiser to have a gluten-free house.

For me its back to the guessing game. I think things I plan to test is AC1. AC1 because my blood sugar came back "a little high", and I can do that via a CVS test later tonight. I doubt thats that answer, but its so easy to check and knock off the list I might as well.

After that I do not have a plan yet.

The tTg test only tests for IGA antibodies and there are about 10-20% of celiacs that don't produce those antibodies, so test results can be false negative. Maybe you could ask for the IgG celiac blood test? Just thought this may be something that you might want to look into.

Insurance wont cover it. So the only way to get it is to go back on gluten till the York labs tests come back in stock, then spend $99 on thier test.

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The tTg test only tests for IGA antibodies and there are about 10-20% of celiacs that don't produce those antibodies, so test results can be false negative. Maybe you could ask for the IgG celiac blood test? Just thought this may be something that you might want to look into.

The IgG is not as specific as the IgA but it's a good idea to get all the tests done so you cover the angles and less of a chance for false negatives.

The whole panel really needs to be done which includes(EMA, tTG, IgA,IgG, total serum IgA)

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I know how you feel -- I'm sorry you didn't find your answer.

In response to Carriefaith -- my test results show two tTg levels. One for IgA and one for IgG. They are both the same at <3.

My tests came back negative also (except the AGA IgG, which was high and the EMA, which was not done), but all my tummy problems went away immediately when I tried gluten-free (after the testing). Since my positive response was so immediate, it makes sense to me that I probably don't have enough (or any) damage to show blood antibodies. If I did, I think it would take some healing time for me to feel better. I'm fairly convinced I have some sort of gluten problem. I started eating it again, just to see if maybe I was crazy, and my D is back again.

Since most people don't respond right away, it's probably good that you're going to be living gluten-free with your son anyway -- you may end up feeling improvement in your health further down the line.

Whatever it is, I hope you find a way to feel better!

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From all the posts I've seen on this, improvement after going gluten-free is the absolute best diagnosis. I myself have no plans whatsoever to seek a doctor's diagnosis. After years of suffering I finally found something that helps. I'm sticking with it.

This is what my doctor told me. When I first went gluten free, two weeks into it I was feeling better and told my doctor. He said don't worry about blood tests, positive dietary challenge is good enough. He told me to go gluten free 6 months, then try reintroducing gluten. With the slip ups I'd had, I didn't bother reintroducing. I had my answer.

Stephanie

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Vincent -

Have you been tested for other food allergies (via blood test)? A friend of mine told me about her little sister who they thought had celiac but later determined that damage was being done by a severe soy allergy.

(Of course, I don't know how true this is - because I've never talked to the sister *or* her doctor - but it's something to consider)

I wish you the best! Good luck!

- Michelle :wub:

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Vincent -

Have you been tested for other food allergies (via blood test)? A friend of mine told me about her little sister who they thought had celiac but later determined that damage was being done by a severe soy allergy.

(Of course, I don't know how true this is - because I've never talked to the sister *or* her doctor - but it's something to consider)

I wish you the best! Good luck!

- Michelle :wub:

I have been test via the scratch test for like 40 or somthing food allergies, none found.

I have had 2 endoscopys, and 2 rounds of the blood test... from a purly objective stand point it would be very hard to argue celiac disease at this point. I am plaing to get the AC1 test next as they said "you blood sugar is a little high , but dont worry about it " :huh: Dont wory about it? LOL!

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No I did not see any dramitc postive when I went gluten-free, but I though I saw dramtic negative when I went back on gluten. I worried it was the placbo effect (Im looking so hard for an answer, I make on..) so I wanted the objective blood test as a measure. I will stay gluten-free mainly because of my son who does have postive blood work, just makes it eaiser to have a gluten-free house.

I just wanted to add both of my children showed up in bloodwork, I did not even though I was so sick I could not leave my house or walk without the aid of canes. If I had relied on bloodwork for diagnosis of celiac or gluten intolerance (I don't care which it it is) I would still have a bald head, arthritis, ataxia, fibromyalgia, IBS with bleeding D every day, migraines and I would still be covered in blisters. They told me over and over again the tests were negative, my dietary response however was not. The negative effect you saw when you started consuming gluten after being gluten-free is your answer. You may very well have other things going on but I am glad you are going to keep your home gluten-free. You may eventually see more improvemnt than you expect. I hope you get some relief soon.

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Guest nini

Vincent, sorry you didn't get the answer you were looking for, but I have to stress, since you did not have the full panel you still cannot rule it out completely. That being said, pernicious anemia (which I believe was one of your symptoms) is highly indicitive of at the very least gluten intolerance, so it's a good thing you are going gluten free. I hope that you see positive results.

Keep in mind too that even those of us that have a positive diagnosis, don't always feel 100% better on the gluten free diet. I'm 2 1/2 + years into this and while I've lost 90 pounds and gotten off of most of my medications, I still suffer from severe fibromyalgia among other issues. I'm still searching for the reasons behind this, but I do know that gluten is a HUGE part of the puzzle. It may not be the only puzzle piece, but def. a biggie.

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Yes I am amenic but for now the diet change(refering to the increase of redmeat and other iron rich foods), and 250% iron supliments is keeping that in check. There is no known cause of he Anemia, so thats one of the reasons I followed the celiac disease train this far.

I plan to call this AM and get my actual results faxed to me, I ma a very anaylitcal minded person and numbers are more real to me the nurse's comments (no offense to any nurses!).

I plan to get the AC1 test, and gotta start watching my BP to make sure thats undercontrol. I do not like the idea of getting on BP meds, or any meds for that matter.

I realy just do not know where to go after that. I will be gluten-free as mention above, but thats not a drastic change from my previos diet. Have to give up berrie burst cherrios, and one or 2 other things but not much realy.

Kind of just in limbo realy. I get alot of the clasic celiac disease stymptons... and no objective test results. My son was only postive on 1 of the 4 blood tests inthe panel he got, so mayhap I am in that case? I just wish there was some objective thing I could piont at thats imune to the hypocrdea or the placbo effect. Like if i broke my arm, I could look at an xray and say yep, right there is the brake, okay lets fix it. :(

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Guest nini

My mom is anemic too, and she refuses to even consider that she may have Celiac or gluten intolerance... even though she has a TON of the classic symptoms and even an IBS dx. She lost a ton of weight when she went on the Atkins diet, but is off it now and gaining again. She doesn't want to give up her homemade sourdough bread I'm guessing!

My daughter was also severely anemic before she want gluten-free... at her subsequent well child checkups, there was no sign of anemia.

Hopefully one day the medical community will come up with better testing and be able to give more definitive results, and the insurance companies will pay for it... Yeah, I'm dreamin, I know...

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I'm in the same boat. Celiac blood tests came back normal. I've also spent a ton of my own money on Elisa allergy/sensitivity testing only to have it turn up mild problems with paprika and some obscure mold, of all things. After my celiac blood tests came back normal, my doctor basically told me he didn't know what else to do for me.

Through trial and error and my own research, I've discovered I feel much better on a gluten and casein free diet. I'm currently taking probiotics to restore good bacteria and some other supplements to rid my system of any bad bugs and/or yeast overgrowth. It's a daily struggle, but I'm already feeling much better.

I've accepted the fact that I'm never going to have an "official" diagnosis and probably won't ever find a doctor here locally who can help me.

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Vincent, sorry you didn't get the answer you were looking for, but I have to stress, since you did not have the full panel you still cannot rule it out completely. That being said, pernicious anemia (which I believe was one of your symptoms) is highly indicitive of at the very least gluten intolerance, so it's a good thing you are going gluten free. I hope that you see positive results.

Keep in mind too that even those of us that have a positive diagnosis, don't always feel 100% better on the gluten free diet. I'm 2 1/2 + years into this and while I've lost 90 pounds and gotten off of most of my medications, I still suffer from severe fibromyalgia among other issues. I'm still searching for the reasons behind this, but I do know that gluten is a HUGE part of the puzzle. It may not be the only puzzle piece, but def. a biggie.

Hi Nini

Sounds like your doing better emotionally re-'little kitty' passing. Good for you.:) :)

Reading this thread as "They" say I don't have full blown celiac disease just a intollerance...I DON'T BUY IT'

They said my numbers weren't high enough and guess my blood PANEL for basic health was good so WASN'T SICK ENOUGH...and of course wasn't SKINNY...Internist just said 'do the diet and see if it works and if it does' you have your answer...

I don't understand these #'s but these are mine...

GLIADIN AB, IGA 60.7

GLIADIN AB,EGG 27.0

TTG AB IGA 1.6

Because of the info i've gotten from you guys let me know obese people have celiac disease in great numbers.

The other comments from the forum are so true. I struggled for years and no one knew why had constant-keeping me in the house D, bone and muscle pain, used a cane, brain fog, FM and on and one. I have other health issues and a hip replacement and they all said...its related to that--so i struggled with it all and the gaining weight with 5 weeks of water D and and neasuea and couldn't eat..and gained 16 #'s......so the bottom line for me is.....IF THE gluten-free DIET WORKS....WHY QUESTION IT!!!!!!!!

Nini --keep looking into the FM issue. I'll interested in that too as that's what one of my dx's were becasue of the pain and D.

Will watch this thread too.

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Judy--good to see you are assertive in all this! hope you have been having a good week!

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Judy--good to see you are assertive in all this! hope you have been having a good week!

HI Jen

Hope you had a great thanksgiving. My stuffing was pretty good :) Our company is gone and we had a great time.

What do you think of my test numbers?

I just don't get any of that...aso just focused on the gluten-free diet. One thing at a time:)

Good to hear from you Jen

Judy

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Okay got eht REAL NUBMERS.

IgA < 1

Thats the result.

That's the only test? Which IgA is that even reporting?

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That's the only test? Which IgA is that even reporting?

It says :

t-Transglutaminase (tTG) IgA < 1

Thats it for celiac disease.

EDIT: tehres a page of other tests, but all normal.

Edited by VydorScope

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