Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Suspecting Celiac Disease--not Sure

cgd

Recommended Posts

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,194
    • Most Online (within 30 mins)
      7,748
    rycarlson
    Newest Member
    rycarlson
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...