Jump to content

  • 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

How Do You Know? I'm Frustrated

Aphreal

By Aphreal
in Coping with Celiac Disease

Recommended Posts

Aphreal Contributor
Aphreal
Posted

I am getting upset. I have had D and gas for 2 days now. I THINK it may have been from eating some corn tortilla chips fried in oil used for flour so CC. I was told they were gluten-free then learned I was supposed to specify gluten-free baked and not corn fried. In my defense the manager did tell me they were gluten-free! Liar. I was fine until this particular dinner Sat but about an hour after, I got that tell tale sign and here it is Monday. I still have it! So I get confused if this is my body reacting to that or something else I ate today or yesterday so now I am over analizing everything! Is this just a trial and error, do you ever stop overreading over analizing over worrying about everything. I am so fed up having to run to the bathroom in public during a great day out with a friend or something. *sigh*

Is this normal? Is it really REALLY gluten? I am starting to wonder. I can't seem to get it right and trust me, I take this very seriously, I read every single word on every label, I don't cheat ever! I don't have the *well just a little bit* mentality because I want to be better. Thankfully I am still migraine free and sleeping fine.

I am about in tears. I was doing better and now it seems cc oil threw me back DAYS!!!

sorry I needed to get that out.

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

Celiac.com Sponsor (A8-M):


curiousgirl Contributor
curiousgirl
Posted

I am getting upset. I have had D and gas for 2 days now. I THINK it may have been from eating some corn tortilla chips fried in oil used for flour so CC. I was told they were gluten-free then learned I was supposed to specify gluten-free baked and not corn fried. In my defense the manager did tell me they were gluten-free! Liar. I was fine until this particular dinner Sat but about an hour after, I got that tell tale sign and here it is Monday. I still have it! So I get confused if this is my body reacting to that or something else I ate today or yesterday so now I am over analizing everything! Is this just a trial and error, do you ever stop overreading over analizing over worrying about everything. I am so fed up having to run to the bathroom in public during a great day out with a friend or something. *sigh*

Is this normal? Is it really REALLY gluten? I am starting to wonder. I can't seem to get it right and trust me, I take this very seriously, I read every single word on every label, I don't cheat ever! I don't have the *well just a little bit* mentality because I want to be better. Thankfully I am still migraine free and sleeping fine.

I am about in tears. I was doing better and now it seems cc oil threw me back DAYS!!!

sorry I needed to get that out.

I feel the same way!

Seems the more I don't eat gluten, the more "allergies" I get! For instance, I just had a few canned oysters from Trader Joe's. The ingredients are just oysters and olive oil. But, now I'm feeling a burning in my stomach that I haven't felt all day.

I'm off coffee as of this morning...my last cup a couple of hours ago with no problem. And, my first one this morning at 8:00....no problem!

So waaaassssuuuup??????

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

It takes me almost a week to get over a glutening. I think the shortest has been 4 days. I think it will take a while to learn what is "safe" when trying new foods. Stick with food you know you don't react to until you get over the glutening. Don't try anything new while you still feel bad.

Sorry your still suffering.

rdunbar Explorer
rdunbar
Posted

yes, it is so frustrating I know. i got glutened last week, after doing so well after shifting into ultra-hardcore, "i'm only eating at home, meat, fruit, veggies, and nothing processed/packaged" mode, about 5-6 months ago. I had a chai that they make from scratch in the kitchen at the health food store which also has a pizza oven! to make it more frustrating it was so unnessesary, and I knew better, I geuss i just got off of my guard and figured i could 'reward' myself, haa!

it's wierd how you forget how much better you were doing before, and just focus on how bad you feel now, and wonder if you are going to feel good again, ever. the ugly irritability and anxiety that resurfaces sure does'nt to help to put into perspective at the time, at least for me.

almost a week later, I'm feeling a lot better, and only have a little achiness, tingling, and horrible mood. no D this time, but I have gotten it badly in the past, before I quit dairy.

also, you might want to consider trying eating corn-free, too; from what i've heard, corn is all cross-contaminated, harvested with the same machinery, and stored in the same facilities as wheat.

Danyelle Demchock Newbie
Danyelle Demchock
Posted

Hello Aphreal!

I have compassion because I was there too and used to call my holistic doctor and sit on the phone with the assistant for hours because I was so frustrated!

Yes, the same thing used to happen to me when I ate any type of grains 4 years ago. Still to this day I don't do well on corn or any type of grains. I have a lot of gas when I eat corn. Corn is a very highly reactive food for many of my clients as well. I often, recommend they avoid corn as well if their symptoms include bloating and gas.

Do you happen to know if you have leaky gut syndrome? Because of leaky gut (undigested food particles leak in to the blood stream cause and autoimmune response) and the damage gluten has done to the intestinal wall, people who are gluten intolerant also find themselves reactive to other "common" foods such as dairy, corn, rice, soy, nuts.

With Compassion,

Danyelle Demchock

Aphreal Contributor
Aphreal
Posted
  • Author

You guys really are the best. Danyelle, the evening this *episode* occured, I ate a LOT of corn. baked corn chips (about 3 tortillas) Plus a flat corn with queso and 2 corn shell tacos. I do eat corn products without issue but I think maybe I overdid it that night. I hadn't had tex mex in a long time and I was tickled they had a gluten-free menu.

One more thing to watch out for I *spose. One thing that would devestate me is if I had to go dairy free. I think I am ok on that front. I eat yogurt every day. Milk and some cheese too.

I hate that any of you are suffering reactions too, On the same token, I am glad I am not alone and I hope one day when I get on the other side of this, I can help people too.

Tiff

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. tiffanygosci
      - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    2. trents
      - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient. The one test that was ordered...
    3. mamaof7
      - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful...
    4. Dizzyma
      - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly diagnosed mam to coeliac 11 year old

      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me. My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free i...
    5. tiffanygosci
      - tiffanygosci posted a topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,955
    • Most Online (within 30 mins)
      7,748
    JodyBledsoe
    Newest Member
    JodyBledsoe
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Help understand results

      By trents · Posted

      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      Help understand results

      By mamaof7 · Posted

      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.