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

Recommended Posts

Aphreal Contributor

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

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

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

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

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

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.

  • 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. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    5. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748

    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.