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

Does this sound like celiac?


Skoit

Recommended Posts

Skoit Rookie

I'm currently waiting on insurance related things before I can really get checked out. But I was feeling like trash for a long time, was unsure what was going on and it was downright horrible on my mental state the entire time it was happening. Which is why i'm here, just for some mental ease until I can get this properly checked. I need it. I was feeling inflammation and my stools were all over the place from darkish green to light colored, I started cutting foods like diary and soy and for some reason Gluten was unfortunately the last thing I got to after quite some time. I never had any severe pains or cramps (or i'd just very rarely feel them), just felt the inflammation alone though it was very mild. I'd say the most major symptoms were brain fog, and fatigue with that slight sensation of unwellness.

I'd say a day after I cut gluten my entire world changed, I felt like I was actually feeling normal for once. My stools changed for the better instantaneously after the gluten cleared from my system, they became more sausage like and kept form but were still a bit yellow.  I'm just now going through all the struggles of first time cutting gluten and realizing what its like to be glutened by the tiniest of things. I'm nearly a week gluten free and it only felt like it was uphill since I dropped it, that is until today. I was eating small amounts of this gluten free bread throughout the week, then today I decided to have a burger with the gluten free bread as a placeholder for buns. So I pretty much had a lot more of the special bread then I was taking normally. I felt okay, a little worse then I have been but not by much until I hit the digestion phase, when I was eating my next meal I got a pain in my lower left abdominal side that was pretty dull but it didn't go away for a good 30-40 minutes (Maybe cramping?). I also felt an increase of brainfog which was starting to ease up a little since I dropped gluten and just felt pretty trashy all day. 

I'm feeling some good relief now after having a BM later on in the night, but something I ate today caused all those symptoms to come right back and all I really had was that burger (no cheese, just ketchup mustard and mayo) and a good helping of rice later on that day. 

Like I said, I do plan on getting checked when I actually can. But I know mental health can really deteriorate the longer this kinda stuff goes on and I could really just want some ease of mind and thoughts. I'm sure everyone here has experienced those dark thoughts and 'what ifs' and that's just kinda what i'm dealing with at this moment.

Also digestive problems run in the family. My oldest sister was an IBS sufferer, my brother has some form of digestive problem that even the doctors haven't pin pointed for the last few YEARS. Unfortunately it looks as if i'm following their lead. 

Thank you for your time!


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



Celiac.com Sponsor (A8-M):



Skoit Rookie

I forgot a few things. One I lost a good bit of weight over the course of like 6 months. Though I did cut a significant amount of sugar in my diet, and I dont eat as much. Two, once on the diet my apatite which was pretty small got a lot better over this week. Three I totally just found a post about someone talking about how they used their gluten free bread in a toaster and even the smallest of crumbs caused them to have a sudden celiac flare. I've been using the toaster that other people in this house have been using for normal bread, in fact the bread I put on my burger was toasted in that toaster which could explain it. 

trents Grand Master
(edited)
4 hours ago, Skoit said:

I forgot a few things. One I lost a good bit of weight over the course of like 6 months. Though I did cut a significant amount of sugar in my diet, and I dont eat as much. Two, once on the diet my apatite which was pretty small got a lot better over this week. Three I totally just found a post about someone talking about how they used their gluten free bread in a toaster and even the smallest of crumbs caused them to have a sudden celiac flare. I've been using the toaster that other people in this house have been using for normal bread, in fact the bread I put on my burger was toasted in that toaster which could explain it. 

Definitely! Get your own toaster. Watch out for gluten in condiments. Wheat is often used as cheap thickener or texturing agent.

Welcome to the forum, Skoit! Be aware that if you ever go for celiac testing you will need to go back on eating a regular amount of gluten daily for 6-8 weeks beforehand or the testing will not be valid.

Edited by trents
Scott Adams Grand Master

Welcome! One other thing to consider is that gluten-free breads often use xanthan gum or other gums, and in some people, even though they are gluten-free, they can cause IBS symptoms:

 

trents Grand Master

Good point, Scott, about the xanthan gum.

Skoit Rookie
12 hours ago, trents said:

Definitely! Get your own toaster. Watch out for gluten in condiments. Wheat is often used as cheap thickener or texturing agent.

Welcome to the forum, Skoit! Be aware that if you ever go for celiac testing you will need to go back on eating a regular amount of gluten daily for 6-8 weeks beforehand or the testing will not be valid.

Did not know that. Thanks for letting me know!

Skoit Rookie
7 hours ago, Scott Adams said:

Welcome! One other thing to consider is that gluten-free breads often use xanthan gum or other gums, and in some people, even though they are gluten-free, they can cause IBS symptoms:

 

Oh I had no idea. Thank you for letting me know, i'll keep an eye on that!


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



Celiac.com Sponsor (A8-M):



GodsGal Community Regular
On 8/24/2021 at 9:09 PM, Skoit said:

Oh I had no idea. Thank you for letting me know, i'll keep an eye on that!

Hi Skoit,

Going gluten free is tough. And, it can be overwhelming. In the beginning, I felt like I was trying to get a drink of water from a fire hose.

Just a thought... You should also look at non-food items in your home for gluten. Check any toothpaste, lotions, cosmetics, soaps, detergents, shampoos, conditioners medications, pet food, etc. That helped me a lot in my journey. Also, don't forget to change your toothbrush.

I hope this is helpful!

Skoit Rookie
11 minutes ago, GodsGal said:

Hi Skoit,

Going gluten free is tough. And, it can be overwhelming. In the beginning, I felt like I was trying to get a drink of water from a fire hose.

Just a thought... You should also look at non-food items in your home for gluten. Check any toothpaste, lotions, cosmetics, soaps, detergents, shampoos, conditioners medications, pet food, etc. That helped me a lot in my journey. Also, don't forget to change your toothbrush.

I hope this is helpful!

OH SHOOT the toothbrush! That's an extremely good point, thank you so much. Very much could be a culprit  because I gave gluten up only recently. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • 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
      133,192
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.