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Testing When Gluten Free?


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#1 Alexolua

 
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Posted 12 April 2004 - 01:15 PM

New here, so please excuse any ignorance I might show in my post. =)

Gonna start with a little background, sorry!

Back on Oct 3rd, I got blood tested for Celiac Disease, didn't get my results back into mid Nov (grrr!), and the person who looked it over, said the blood test only said it was possible.

Results:
Gliadin AB (IGG) = 64
Gliadin AB (IGA) = 34
-And, thing says over 30 is positive, lol.
Transglutaminase Ab (IgA) = 5

That last one came back negative.. under 20 is negative, but very negative, and in things I read, said a very negative there, could go along with Celiac Disease, if others higher.

So, she wanted me to get the biopsies done, but I went gluten-free after I got the blood tests, and well since it took them so long to get me my results, I didn't want to go back on Gluten, seemed like a complete waste, and the test was good enough? Also, having been dealing with health issues with no cause for 10 years (besides being in my head according to some doctors), I'm a bit in a hurry to get better, LOL.

Well, err.. unfortunately, I might not have been gluten free. Made some mistakes in reading labels, as late as Jan. After that, being super careful, I didn't know anything about a little thing called contamination.. bleck. Found I'm very naive and ignorant about being gluten-free..

Anyway, about 2 weeks ago, decided to go back on Gluten, and get the further testing, since I wasn't seeing much improvement at all. Though, seems like, at times.. I am feeling worse than before? Not fun, and testing is set for May 17th.

So, anyway thanks for reading all that. My question is, is there anyway I can get a nice positive results that are for sure, while being gluten free?

Any umm.. comments on anything I said, that might be helpful? I'm open, and know I'm quite in need of more info.. have been trying to find stuff online.

And umm.. didn't mention symptons, not a favorite subject, just say a horribly messed up large intestine, it seems. Managed to get through College, though last two semesters.. work load was about as small as could be. And, might this be a sympton too? When I was younger (mid teens), working out tons.. never gainned much muscle mass, read that can happen? Though.. didn't have any intestinal systems then (well maybe a little cramping). Do believe my mothers uncle had the disease though.. doctors were "dumber" then though. She just remembers he didn't eat beard.. lol. Also been told I have Fibromyalgia.. and read that can go along with celiac disease.. hmm. Oh well, typed enough I think, lol.

Thanks for any replies in advance. =D
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#2 nichole8998

 
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Posted 12 April 2004 - 08:09 PM

D

I'm not an authority on celiac. But I can offer some suggestions. I am also awaiting a biopsy. Mines April 22. I have also been gluten free for a while and I am dreading having to go back to eating it for the biopsy. My specialist instructed me to atleast have a slice of bread everyday for five days before the biopsy. However I have been doing some inquiring on other message boards and everyone has a different reccomendation. Most say that you should be injesting gluten for atleast a month before the biopsy. Unfortunately I did not have a months notice for the pending biopsy. I have started eating gluten again today...I already feel like crap from it. But I guess it's better to suffer for a few days or weeks, if you can get an accurate diagnosis. To answer your question about gluten free before the biopsy. I wouldn't reccomend it everything that I have read, heard or seen, has said that you must be injesting some gluten prior to the biopsy. Otherwise your bowel and intestines might have already healed( since you have been gluten free since january.) and the damage that they are looking for may not be there. Good luck!!

nichole8998 ON Canada
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#3 nickra

 
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Posted 13 April 2004 - 03:11 AM

Hello,
I'm waiting for my biopsy and my doctor advised me not to start the gluten free diet until after the test. I have already had a positive blood test, but want to make sure.
It's a nightmare situation, knowing that cutting out gluten will probably make me better, yet not being able to do it. To make it worse I got a letter from the hospital this morning saying my biopsy wouldn't be for another 12 weeks!!!! yes 12!

I'm desperate to go on the diet and start feeling better (hopefully) but I have read that you can do more harm than good by going gluten free and then switching back again - something to do with the bowel only being able to mend itself so many times before it becomes so damaged it cannot cope.

anyone know how true this is or have any experience with going on and off the diet? your experience and knowledge would be helpful and greatfully received :)

Keep it up everyone...
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#4 plantime

 
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Posted 13 April 2004 - 05:39 AM

From what I understand, if you go gluten-free, and then begin consuming it again for testing, you have a much worse reaction! Your body discovers that it likes not having the gluten, so when you eat it, your body completely rebels. That is why my doctor will not order the blood tests. I have been gluten-free since Feb. 14, and even a little dab makes me extremely ill. If you are already eating gluten, then do not stop until after all of your tests are finished.
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Dessa

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#5 Alexolua

 
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Posted 13 April 2004 - 12:20 PM

Thanks for the quick replies! =)

nickra -> Yeah, I agree nightmare situation. Though, kinda funny too? Doctors giving orders to eat unhealthily is just funny in my mind, in a twisted way, lol. And heck, theres no guilt now when eating something yummy, since it's doctors orders! LOL

Though, I have no real experience going on and off the diet. Been on Gluten all my life, till this time, and well.. think it does seem like I'm feeling worse than before, though.. hopefully not causing any unhealable damage, that'd suck.

Can understand your desperation too, lost quite a few years to health problems. Would like to get back to life!

plantime -> Thankies. I'm thinking that does seem to be true.. worse reaction. I went to check on that Enterolab I've seen mentioned on this site last night though, and looks like you can be tested by them while being gluten-free?

My biggest fear though, is what if things come back negative? Cuz if it's not that, well.. 10 years of going to doctors, kinda running out of options! LOL Can Celiac Disease start out mild, maybe just some cramping, etc.. then continually get worse over time? That's what happened to me.

Dunno, though.. thinking of besides biopsies, also trying the Enterolab testing too, if anyone thinks good idea?

Eww.. thunderstorm, guess I should stop.

Thanks again. =)
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#6 lauradawn

 
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Posted 13 April 2004 - 01:48 PM

Alexolua,

If you have been gluten free since Nov when learning your results, please be aware that there is a good chance you will get a negative result from your biopsy. It's not a guarantee, but if you have Celiac, and your body has begun the healing process it may not show enough damage to be determined celiac now. One of my books explains that it can take as long as 5 years for ENOUGH damage to occur to be dx as celiac through a biopsy. It can also depend on the technician reading the biopsy's. It's can be a relative term. You may have some damage but not TONS and therefore they rule it out, when in fact you have it. IT's a very difficult situation I agree. From my understanding the TTG is extremely sensitive for Celiac specifically, and your #'s were very low. The number you are thinking of that can be low and you still have Celiac is the IGA. You can have an IGA deficiancy with Celiac. With my blood work and the my sons they also had a TOTAL IGA, which was explained to me as a verification, since other #'s CAN be high for other reasons, the total would be a good verificiation. Did they do one on you or just those 3? It's not bad that they did those 3, Im just curious if there was any others.

If you do not have Celiac, do you feel better with a gluten-free diet? apparently since you said that you feel worse going back on gluten. From my understanding there are many autoimmune diseases where a gluten free diet is recommended. There has been some connections with gluten and other autoimmune diseases. Apparently some conditions can be improved by going gluten-free. That being the case, a gluten-free diet could make many feel better even if not having Celiac.

If you decide to do the Enterolab, you may find other sesitivities that could be complicating whatever your problems may be. I did not go through Enterolab, so I do not know, but many here have that could help you.

Hope you find out soon.!!!
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#7 nickra

 
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Posted 13 April 2004 - 10:59 PM

Alexolua:

lol - I know what you mean, it is kind of twisted that the doc is telling me to eat stuff that is bad for me!

:D I try to see it like i have the best of both worlds - for now i get to eat everything and anything i like (and believe me i am really going for it with some of my fave stuff) and then in the future i get to be all healthy and feeling well too!

:( I could look at the negatives, like at the mo i'm really sick and in the future i will be on a restictive difficult, pain in the backside diet, but ive always been more of an optimist and besides, what good would negative thinking do? bugger all really!

Well, i have to go to work now, i dont eat before i go in case i get sick, so will be starving later :angry:

all the best to all of you B)
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#8 Alexolua

 
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Posted 14 April 2004 - 11:16 PM

lauradawn -> Really, five years? Yikes. Well hopefully I didn't do much healing than while I was trying to be off the diet. Though during the time I thought I was gluten-free, looking back after doing a little more research, I wasn't aware of products that could be contaminated, so.. might have kept a little gluten going.

Also.. I kinda, sorta, kept my gluten free stuff in the.. bread box.. with the, umm.. ya know, the yummy real bread, other people ate.. *hides*

Even though it is sounding like the life style sucks, diet hard to stick to.. well, hoping it's Celiac Disease.. after 10 years of dealing with doctors, no clue what else it could be. Thanks for the info though! Think I might try that Lab, and get the scope down the throat.. and hopefully one will give me an answer! LOL

My blood work on the print out I got, said the one I have low, can be low.. with Celiac, unless it was wrong.

*shrugs*

Wouldn't be the first time a doctor was wrong with me, lol.

nickra -> I like looking at the more positive view, well.. trying too!

Don't eat before work? When I was "healthier" and able to do stuff, I didn't eat the day before I had something planned.. that was fun! Kinda worked though, and I can't remember the last time I've actually felt hunger, so.. that helps, lol.

Any Celiacs had that problem? Stomach that just doesn't ever feel hungry?

Thanks for the replies you two. =)
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#9 nickra

 
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Posted 15 April 2004 - 09:09 AM

lol - are you havin a laff?
i think im the oppositte - my belly is always hungry, although at times when i have been really sick, my body has just repelled all thoughts of food, which is kind of wierd sometimes, but always makes me feel so much better!

nicky
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#10 Alexolua

 
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Posted 15 April 2004 - 11:04 AM

Maybe just a little laff. =)

Though actually, should say.. while I never feel any hunger pains, my brain more than makes up for it in craving food, LOL. And weirdly, when I'm usually having a "bad day" well, hell.. all are bad, but I mean worse day, lol.. the desire for food is even greater than usual. Can feel like a bottomless pit when it comes to eating. Which sucks, since I don't wanna put much food in when I'm feeling worse. I hate food at those times, LOL.
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#11 nickra

 
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Posted 15 April 2004 - 11:42 AM

lol
i find that because i have such a quick reaction to gluten i have to eat really fast because once i feel poorly i dont want to eat anymore and i have to throw away the food and then a few hours later im starvin again!

if i eat too slowly i get sick before i even finish the meal - what a bugger that is???
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