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This Is Hell :(

hineini

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hineini Enthusiast
hineini
Posted

:(

Today I started my gluten challenge. The wheatey things I ate: One chocolate croissant. Three "Petit Ecolier" chocolatey French cookie things. Lots of sushi, complete with lots of wheat-containing soy sauce.

Hell, I tell you.

Acid indigestion, heartburn, unbelievable gas, diarrhea, bloating, stomach cramps, a sour taste in my mouth. Yeah, I know you needed all the details.

It's either the wheat, or it's the soy. I can't imagine that it could be the rice and beans and swiss chard I ate today, or the tapioca bread w/PB&J.

I don't think I can do this. I might have to shell out the $400 for the stool test, the only test that doesn't require one to be eating a gluten-loaded diet at the time of testing. The only test my @(*@)#$&(#*$ insurance doesn't cover. Sure, my doctor might not take the results seriously. But if it helps me figure out what the poop is making me so sick...

I want to puke.

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Nantzie Collaborator
Nantzie
Posted

HUGS...

My GI (very nicely) asked me to do a gluten challenge at some point and report back the results. I told him that it would take Fear Factor money for me to even consider it, and even then, I don't think I could make myself do it. I remember telling a friend of mine that I no more want to eat gluten then I want to plunge my hand into hot Crisco. (I was frying gluten-free chicken at the time...)

Just so you know, Enterolab has kind of an a la carte menu as well. I just ordered the Stool Test for Gluten Sensitivity, which is only $99. They also have just the genetic test for $150. The $99 stool test will tell you if your immune system is reacting against gluten.

I wasn't able to afford all the testing all at once. I did just the genetics for myself (since I can tell how my own body feels on gluten vs. off). Then I got the genetics done for my kids. Then I got the $99 stool tests for my kids as I could afford it. I kind of wish I had gotten the full panel for both of my kids, but I really just couldn't afford that much money for a full panel all at once.

My daughter's pediatrician told me that Enterolab is an accredited lab, and he trusts their results.

It might be worth it to either jump in and go with the full panel, even if you have to use a credit card, OR do it in bits and pieces just to get some answers.

Sorry you're feeling gross. If they ever come out with a pill, I'm heading straight for my favorite (pre-gluten-free) sushi place. It's really the only place I still crave...

Nancy

gfp Enthusiast
gfp
Posted

I find withdrawal as bad as the glutening in many ways.

You could try keeping it ticking over with a nibble in the morning etc.

ravenwoodglass Mentor
ravenwoodglass
Posted
:(

Today I started my gluten challenge. The wheatey things I ate: One chocolate croissant. Three "Petit Ecolier" chocolatey French cookie things. Lots of sushi, complete with lots of wheat-containing soy sauce.

Hell, I tell you.

Acid indigestion, heartburn, unbelievable gas, diarrhea, bloating, stomach cramps, a sour taste in my mouth. Yeah, I know you needed all the details.

It's either the wheat, or it's the soy. I can't imagine that it could be the rice and beans and swiss chard I ate today, or the tapioca bread w/PB&J.

I don't think I can do this. I might have to shell out the $400 for the stool test, the only test that doesn't require one to be eating a gluten-loaded diet at the time of testing. The only test my insurance doesn't cover. Sure, my doctor might not take the results seriously. But if it helps me figure out what the poop is making me so sick...

I want to puke.

This post illustrates why it is so very important to use a whole food to do a gluten challenge. You need to challenge with a food that has only the ingredient you are challenging. Eat cream of wheat or shredded wheat for the gluten challenge and eat something like unflavored soy nuts for the soy challenge and make sure you do them at least a couple of weeks apart. You don't need to shell out megabucks for testing if you do the challenge correctly you will have your answer. Although I think you have your answer to the gluten already, that is most likely what you reacted to, to end all question clear your system again for a week or two and then challenge with a whole food.

CarlaB Enthusiast
CarlaB
Posted

Enterolab may end up costing more in the short run ... but in the long run, not having an official diagnosis may be easier (no pre-existing condition that insurance recognizes).

I appreciate your frustration, and I wouldn't wish a gluten challenge on anyone. Children read the board, including two of my own, so I'd appreciate it if you edited your language.

hineini Enthusiast
hineini
Posted
  • Author

Hi All,

Thank you so much for the support. It means so much to me, you have no idea.

First of all, I'm so sorry... I cut and pasted this post from my blog, without re-reading it so I didn't realize I'd used a rather crass swear word in it. As you can see, I've edited it out! Apologies.

I am 95% confident that my (main) problem is gluten, because I don't react this badly when I eat tofu, when I eat corn, etc. I do sometimes get gassy but I don't feel this awful. So I don't think that cleaning out my system for a week and starting all over is something I am willing to do at this point, though it makes total sense to do a single whole food at a time if you really want to identify what's making you sick!

These responses to my post make me feel pretty clear that what I really need to do is suck it up and pay for the full Enterolab panel. Ultimately, I think people who've posted here are right... it will save me money, physical pain and stress.

I am relieved to know that some doctors do take it seriously, so if I find out I have celiac disease or any other allergy I can talk to my GP (if not also my GI) about it.

Thanks again - i'm so glad I've found you all!

CarlaB Enthusiast
CarlaB
Posted

Thank you :)

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Nancym Enthusiast
Nancym
Posted

It's an individual thing but the testing is only needed for one thing. To help you go gluten free or not. And if you've figured it out via diet, then I'd think the test is optional.

hineini Enthusiast
hineini
Posted
  • Author

Well, that didn't last long. As you'll see in my sig I gave up on the gluten challenge. I called my doc and asked him to call me back so we can discuss. But I don't think I can agree to go back on gluten just for the purpose of a diagnosis. I"ve been gluten-free again since Saturday afternoon and damned if I don't feel WAY better.

floridanative Community Regular
floridanative
Posted

Dr. Cynthia Rudert of Atlanta (only Celiac doc in SE) says she never asks a paitent to do a challenge if it makes them too sick. She thinks that is a barbaric practice as a matter of fact. Or she might have said inhumane but in any case, she says it's not necessary if you know gluten is the culprit.

hineini Enthusiast
hineini
Posted
  • Author
Dr. Cynthia Rudert of Atlanta (only Celiac doc in SE) says she never asks a paitent to do a challenge if it makes them too sick. She thinks that is a barbaric practice as a matter of fact. Or she might have said inhumane but in any case, she says it's not necessary if you know gluten is the culprit.

Thanks. That is reassuring. And I think she's right! Why is it necessary to make someone sick in order to verify that they're sick?

Guess what? I just shelled out $589 (on my credit card - Just after I'd finally paid all my CC's off! Bah :( ) for the full Enterolab tests for celiac disease, soy, yeast, milk and eggs.

*Phew*

I will finally have some answers, in just a couple of weeks! Whether or not my doc takes the results seriously, I think they will be useful for me and well worht the investment.

eleep Enthusiast
eleep
Posted

I'm definitely glad I did the Enterolab thing -- I was only trying to "gluten challenge" myself for a week before the blood tests and those results turned up inconclusive. By the middle of that week, I could barely get up off the couch. Frankly I don't want to do any more damage to my body than has already been done and I don't have the time to put my life on hold while I'm sick -- I've been feeling sick long enough.

eleep

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