does the amount matter?

cruelshoes · Joined: 23 Sep 2005 Posts: 3380 Location: Washington State

I promise not to take your Sulfuric acid comment the wrong way, if you promise not to take this comment the wrong way. Very Happy

IMO, you have not had adequate testing to know if you are “just” gluten intolerant. You mentioned in another post that you had ALCAT testing done, which is a largely unproven form of allergy testing. Until you have the Celiac panel or something similar, it is impossible to know if you are a celiac, much less if your body is producing antibodies to gluten. We can’t generalize about what your symptoms are going to be because they are different in every person. Some celiacs, for example, have no symptoms whatsoever, but have positive serology and villi that are totally destroyed. Then there are some who have devastating symptoms and show a lot less villi damage or less conclusive bloodwork.

If it were me, I would absolutely not be on the GF diet without pursuing celiac testing first. There are just too many unknowns. After the celiac testing, there is more information available to throw into the general mix to determine what is up with you. Really, we aren't trying to be evasive, there just isn't a pat answer to your question.

And I consider Gluten to be less like Sulfuric acid and more like Uranium-238. Very Happy

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-Colleen

Where are we going, and what am I doing in this handcart?

bbillcee · Joined: 23 Oct 2009 Posts: 30

cruelshoes · Joined: 23 Sep 2005 Posts: 3380 Location: Washington State

jeant · Joined: 06 Apr 2008 Posts: 274

bbillcee · Joined: 23 Oct 2009 Posts: 30

if u go gf then wanna get tested can u just start eating regular again? i've been gluten free a couple days, how long before what they look for disappears?

BTW i enjoy the gluten free brown rice pasta better than whole wheat! and pasta i eat everyday of my life

rpf1007 · Joined: 13 Feb 2008 Posts: 707 Location: Chicago

I didn't have to do a gluten challenge myself, but I have heard from many that once they go gf it is nearly impossible for them to go back to eating enough gluten for an extended period of time. Personally I don't think I would last a day. That is why people find it usually easier to just keep eating gluten until the testing is complete.
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Rachel

cruelshoes · Joined: 23 Sep 2005 Posts: 3380 Location: Washington State

mom2cassie · Joined: 22 Oct 2008 Posts: 73

I think there are two groups.

A: You react severely to gluten. In this case, I think it is an easy decision of whether to eliminate gluten or not. The tests are still helpful from an informational perspective, but not a necessity to help you adhere to the diet. There is no question of if or how much gluten you will consume b/c any significant amount will make you ill, so there is very little temptation. In addition, the drastic health improvements are enough to help you understand that gluten is not your friend... Wink

B: You don't react severely to gluten. And I mean this in a short term sense (in a few hours or days). If you have "vague" reactions after consumption, it probably won't be enough. For these individuals, I think it is VERY necessary to get the celiac test before going gluten free. If you have true Celiac disease -- the auto-immune disorder -- you need to stay completely away from gluten. Period. And this diagnosis is the only thing that will have the chance of getting you to stick to a strict gluten free diet (and for some, this may not be enough, but it's your best hope!). If you do not have the auto-immune disorder, well -- the jury is still out. Some will say that a little in your diet won't hurt. Others say you still need a strict diet. That is your own decision which you choose to believe. I tend to lean towards the former, but that is JMHO.

Either way, you then have enough data to help you determine what is best for you.

FWIW, In my case, I did have some of the blood tests. The ones they did were negative. But by then, I'd already gone GF and seen drastic improvements. Soon after, I accidentally consumed a small amount of gluten, and I rapidly felt awful again. My GI doc was completely unhelpful (he is the "you don't have celiac unless you test positive on the blood test AND the endoscopy" type) and my PCP suggested I could either fight it or just continue the GF lifestyle w/o the official diagnosis from him. I just chose to stay GF b/c it was a no brainer for me. Whether I have true celiac or not, gluten is not my friend.

HTH!

Lea

aklap · Joined: 02 Oct 2004 Posts: 10608 Location: WI, USA

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countrygritz · Joined: 24 Mar 2009 Posts: 50 Location: Smoky Mountains

I have been GF for seven months now. The second month one of my co-workers brought in a red velvet cake with cream cheese icing. Oh Lordy! Her cakes are to die for. I used to eat three pieces every time she brought in one (which is fer everyone's B-days). I thought that just one tiny piece wouldn't hurt me. So I ate it around 11 am and I was fine fer four hours. I thought gee maybe I can eat gluten. At 3 pm, I started feeling it and finally ended up huggin the toilet around 7 pm. I have not knowingly eaten gluten since. In August on vacation I figgered out I couldn't have Blue Bunny Ice Cream. I thought all plain chocolate ice creams would be ok. NOT! That bunny was lethal. I stick to the Haagen Daaz plain choco ice cream.