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Suspecting Celiac Disease--not Sure

cgd

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cgd Newbie
cgd
Posted

Hi, I just found this place, and it seems like a good one.

I'm a 40-year-old woman, and I've suspected for some time that I have issues with gluten. Through the years, I've had digestive problems, depression and chronic insomnia, psoriasis, sinus and allergies, and other seemingly unrelated health problems. I haven't gone and gotten a diagnosis yet, but am trying the gluten-free diet. So far it's good, my sinuses are 100% better (still have dust alleriges, but can handle this).

Due to medical bills already owed this year, I probably won't go get an endoscopy and tests at this time. However, if the gluten-free diet provides relief, I'm thinking this is my answer. My FIL did just that--never got diagnosed but saw on the news about celiac disease and tried it. He pays the price if he eats gluten, so he's sure he has this.

I've been gluten-free for 4 days now, and so far so good. I believe, however, I got glutened at the Chinese restaurant yesterday because I ate the spicy chicken (which was probably prepared with wheat-containing soy and other sauces), and it killed my stomach. I guess Asian food is largely out then, huh?

Anyhow, just wanted to say hi and I've enjoyed the reading I've done here so far. I'm lucky in that my FIL has this, so my family understands it. Thanks!

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Carriefaith Enthusiast
Carriefaith
Posted

Hi! Welcome to the board! If you do decide that you want an official diagnosis you would have to go back to eating gluten again or else you may get false negative results. However, some people are happy with just a postive dietary challenge.

I haven't gone and gotten a diagnosis yet, but am trying the gluten-free diet. So far it's good, my sinuses are 100% better (still have dust alleriges, but can handle this).
I found that the gluten-free diet really helped my sinuses as well!

I guess Asian food is largely out then, huh?
A lot of soy sauce has wheat in it and most of their meats are breaded in wheat. I make chiense food from scratch at home!
jenvan Collaborator
jenvan
Posted

hi cdg-let me be the first to welcome you to the boards. you will love this place--so many great people and so much helpful info.

i went the traditional route and got a blood test, endoscopy to diagnosis celiac. some here did the diet as you have, and self-diagnosed. i will say if you go gluten-free and ever decide to get tested later, it will be difficult. since you are still in the beginnings of gluten-free, you could go get the the blood test at least, that would be what i would do personally. but i understand medical costs! do you have insurance?

To get more info on Celiac-go here: https://www.celiac.com/st_main.html?p_catid=2 I'm not sure how familiar you are with it all from your post... This answers a ton of the major questions of Celiac and going gluten-free. You will learn Celiac calls for a strict adherence to a gluten-free diet--which can be confusing at difficult at times. ie: with the chinese restaurant... you probably were glutened, soy sauce is in most chinese. And if it wasn't specifically in your dish, you have to worry about cross contamination. There are quite a few restaurants with gluten-free menus, and there are ways to work with other restaurants to avoid cross contamination.

Good luck to you !!

cgd Newbie
cgd
Posted
  • Author

Thanks for the warm welcome, Carriefaith. I did go buy some gluten-free soy sauce at the health food store, so maybe I can cook Chinese food at home now. I do love it and would hate to give it up!

I think the positive dietary challenge is telling me what I need to know. I'll give it some time, but already it's made a huge difference.

cgd Newbie
cgd
Posted
  • Author

Thanks for the hearty welcome, Jenvan--already I've found a lot of information and support! I'm somewhat familiar with this as my FIL has it.

You're right--the ideal thing is to get tested. I do have insurance, but it's not very good. Thanks to the other health issues I've had this year, the funds are kinda low . . . I think the dietary challenge will be my answer. Plus after only a few days, I feel so much better that to eat gluten again so the test results would be valid would be hard!

Carriefaith Enthusiast
Carriefaith
Posted

I would say that if you are noticing improvements on the gluten-free diet then you could have celiac disease or a sensitivity to gluten. There are a few recipes for chinese food here in the recipe section. I've tried the lemon chicken and my own of coarse, both very good!

Here is the link!

Open Original Shared Link

cgd Newbie
cgd
Posted
  • Author

Thanks for the link, will have to try those!

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Emme999 Enthusiast
Emme999
Posted

Before you rule out the blood tests - find out the cost. At my University Student Health Services, the blood test (ttG IgA) only cost about $46. You ought to call various clinics in your area and find out if you could afford one before assuming it will be too expensive.

I had the blood tests and the endoscopy for my diagnosis. I remember hearing someone else say that they were glad that they had the blood test because if they hadn't, they would always be doubting themselves and be more likely to cheat and not take the diagnosis seriously. (Since they never got an official one!)

Welcome to the forum :)

- Michelle :wub:

Guest nini
Guest nini
Posted

regarding Chinese Food, I just wanted to say that some Chinese Restaurants can be very accommodating to a gluten free diet, if you can find one that you can visit when they aren't busy and talk to the management, they may be able to make some dishes special for you. The Chinese Buffet near my work sees me coming and they will automatically go in the back and make me a fresh plate of steamed veggies in a clean steamer and bring me out a freshly made bowl of white rice. I carry my own soy sauce and salad dressing and I get veggies off of the salad bar. So far so good.

Today our local Gluten Free support group had a meeting/luncheon at a Chinese Restaurant and they were closed to the public and everything they fixed was gluten-free. It was incredible! They used gluten-free soy sauce and they even did a sweet and sour chicken with rice flour... My daughter and I were in heaven!

cgd Newbie
cgd
Posted
  • Author

Thanks for the info. Bean, that's a good idea about looking into the blood tests.

Nini, I might have to talk to my favorite Chinese restaurant about preparing gluten-free dishes. Guess you never know til you ask, huh? I also like Japanese sushi, that should be OK if you use gluten-free soy sauce, right?

Guest nini
Guest nini
Posted

regarding the sushi, double check it, I don't know what they do with the raw fish to keep it edible, plus I know with any of the california rolls or the like if they use imitation crab legs, those have gluten in them.

cgd Newbie
cgd
Posted
  • Author
regarding the sushi, double check it, I don't know what they do with the raw fish to keep it edible, plus I know with any of the california rolls or the like if they use imitation crab  legs, those have gluten in them.

<{POST_SNAPBACK}>

Whoops, didn't think of the imitation crab legs and gluten. . . thanks for the warning!

Merika Contributor
Merika
Posted

Hi C,

LOL, i had my first oops-screw-up at an asian restaurant too. I thought I was being so careful, and avoided the soy sauce, but ordered miso soup (barley!!!). Doh! Live and learn. :)

Merika

cgd Newbie
cgd
Posted
  • Author
Hi C,

LOL, i had my first oops-screw-up at an asian restaurant too. I thought I was being so careful, and avoided the soy sauce, but ordered miso soup (barley!!!). Doh! Live and learn. :)

Merika

<{POST_SNAPBACK}>

Yikes-forgot about the miso barley thing!

jriegel Newbie
jriegel
Posted

Hey everyone, i've just started suspecting that i have a gluten intolerance. i stopped eating breads and pastas for a few days and when i ate bread again it was really bad, which is when i started suspecting. anyway, i asked on the doctor's forums but it doesn't look that active: what kind of doctor should i go see to test for celiac?

and i know that i should eat some wheat products for a day or so before for test to make sure it doesn't show a false negative. i read a list of symptoms from the mayo clinic and i have most of them: reactions that seem to be like parasite infection and anemia (i was turned away from donating blood because my blood didn't have enough iron in it), irritability, stomach upset (diarrhea, abdominal cramps, gas and bloating, sharp pains in my stomach and abdomen), joint pain, muscle cramps, mouth sores, tingling in the legs and feet, general weakness, etc.

it sounds like i'm miserable! but i'm not. i haven't noticed a lot of this stuff since i stopped eating gluten-containing foods. but when i do, take a bite or anything, man i feel it within minutes but the worse is when i wake up the next morning - it feels like there's a rock in my gut. SO miserable!

any advice (esp. what kind of doctor) would be very appreciated!

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