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Possible Celiac

MissHaberdasher

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MissHaberdasher Apprentice
MissHaberdasher
Posted

Hello all,

I didn't really get diagnosed with Celiac disease yet, but my doctor has strong suspicions that I may have that. I opted to put myself on a gluten-free diet for 2 weeks (after which wheat will be re-introduced to my system and we'll take note of any reaction I may or may not have) instead of a blood test... So at this point, I'm pretty confused. I LOVE bread. I used to eat tons and tons of bread, that was the staple of my diet. I liked going to restaurants and trying bizarre foods that I've never heard of. I considered joining the Peace Corps and traveling. Now my ONE MAIN GOAL in life of going to the peace corps might go down the drain. I know it's early to jump to conclusions but it kind of makes sense... I'm thin and it's very difficult for me to gain weight, I have vitamin deficiencies, I can get very fatigued for a good week at a time, I get random muscle cramps, sometimes stomach or intestinal pain, etc... So I'm feeling alternatively excited about eating healthy food, PISSED about the loss of my favorite foods and ability to eat anything I want, incredibly upset (to put it lightly) about the peace corps thing... Ugh, I don't even know where to start, what do I do? What if I really do have Celiac? Is the only way to find out through a blood test? Where do I start??!! How can I travel and help people in third world countries and live in a tent for months at a time? ARGH. Am I jumping to conclusions? Hm.

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Skylark Collaborator
Skylark
Posted

Hi there, and welcome to the board. You start by going back on gluten and going to the doctor for a celiac panel. Celiac is diagnosed through either blood or biopsy and you have to be eating a full gluten diet for the tests to have any hope picking it up. Even so, the tests are only about 75% accurate. Trying the diet is a last resort, because you won't know strict you need to be. If you're celiac, eating gluten causes autoimmune damage and cheating on the diet can make you very sick.

I totally understand about liking to try new things and possible celiac. I used to go to any hole-in-the-wall ethnic restaurant and try anything. I miss it terribly. I moved and there are a bunch of restaurants around my house I can't explore because the owners don't speak English well enough for me to be sure I'm getting safe food. Thing is, not being sick all the time is worth the lifestyle change. I have to be honest - it wasn't much fun to eat out and end up miserable half the time afterwards.

I can imagine how upsetting it is to possibly bail out of Peace Corps, but how can you be travel and volunteer effectively if you're exhausted for weeks at a time? You don't have to avoid travel; you just need to go places where you can bring food or be certain you can get gluten-free food to cook. Heck, you might even be able to do Peace Corps if you can somehow be sure to have a fire, a pot, and a great big bag of rice.

MissHaberdasher Apprentice
MissHaberdasher
Posted
  • Author

Hi there, and welcome to the board. You start by going back on gluten and going to the doctor for a celiac panel. Celiac is diagnosed through either blood or biopsy and you have to be eating a full gluten diet for the tests to have any hope picking it up. Even so, the tests are only about 75% accurate. Trying the diet is a last resort, because you won't know strict you need to be. If you're celiac, eating gluten causes autoimmune damage and cheating on the diet can make you very sick.

I totally understand about liking to try new things and possible celiac. I used to go to any hole-in-the-wall ethnic restaurant and try anything. I miss it terribly. I moved and there are a bunch of restaurants around my house I can't explore because the owners don't speak English well enough for me to be sure I'm getting safe food. Thing is, not being sick all the time is worth the lifestyle change. I have to be honest - it wasn't much fun to eat out and end up miserable half the time afterwards.

I can imagine how upsetting it is to possibly bail out of Peace Corps, but how can you be travel and volunteer effectively if you're exhausted for weeks at a time? You don't have to avoid travel; you just need to go places where you can bring food or be certain you can get gluten-free food to cook. Heck, you might even be able to do Peace Corps if you can somehow be sure to have a fire, a pot, and a great big bag of rice.

So if I've eaten gluten free for a day will that mess up my blood test results?

And, unfortunately, Celiac is on the list of conditions that will not be accepted. Open Original Shared Link

Also, thanks for the quick response :)

Skylark Collaborator
Skylark
Posted

A day isn't a problem. Just go back to your normal diet until you can get the testing done.

That document you linked says they defer for Celiac Sprue, meaning someone with the active diarrhea. It says they can't typically accommodate "Celiac sprue - symptomatic within the last 6 months".

It sounds like you need to get your health sorted out, then talk to them. There is a number on the form. I would think you would be able to have some way to cook just about anywhere and rice and beans are not uncommon staple foods in third world countries.

GFinDC Veteran
GFinDC
Posted

There have been threads about the Peace Corp on the board before. It might help to do a search and find some of those to read.

Jestgar Rising Star
Jestgar
Posted

I considered joining the Peace Corps and traveling. Now my ONE MAIN GOAL in life of going to the peace corps might go down the drain.

Stop pursuing an official diagnosis. If it's not in your medical record, it doesn't exist.

Skylark Collaborator
Skylark
Posted

Stop pursuing an official diagnosis. If it's not in your medical record, it doesn't exist.

Oh, good point!

Bread "doesn't agree with me". Is it possible to get some rice? B)

BUT, then there are all the uncertainties of undiagnosed celiac. I wish I'd had a clue my trouble might be celiac when I went on my elimination diet. By the time I was offered testing I had been gluten-free for many months and there was no going back. Now that I have Hashimoto's it would be good to know if I have celiac as well because the risk for further autoimmunity is higher.

You could do your Peace Corps stint and then gluten challenge, though you might make yourself sicker doing so.

Kind of stupid that a non life-threatening allergy is OK, but celiac is not. It really does look from that paper like you can join if you're celiac but it's well controlled. I bet the fear is someone with bad diarrhea getting dehydrated in the middle of nowhere. I would still give them a call (use a fake name and call from a pay phone) to feel out about well-controlled celiac. What if they say "no problem, we'll place you somewhere rice is easy to get"?

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