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

Update - Promising Signs?


DownWithGluten

Recommended Posts

DownWithGluten Explorer

Hello again. Just as a quick recap (you can skip this if you want to get to the point ;) ) ...Since as far back as I can remember, I've had stomach annoyances. Then, appendix out in 5th grade. Along with that, the discovery of hypothyroidism/Hashimoto's. Then...around 10th grade (uh...15 years old) it all took a turn for the worse. I had one of those "attacks" from eating greasy food. Violent, wretched pain only relieved by a "BM". And it stayed. Turned into cycles of "C", then that massive attack, then C, then attack....etc. Sometimes, the attacks came just from greasiness. Went to doctors around at around age 18-19...said it was IBS. Gave me Zelenorm which made me bleed so I stopped. Tried various other doctors. Oh, I should say - I was blood tested for Celiac's, and it came up negative. No biopsy though. Then I tried flagyl...yeah nothing working.

So this January I just gave up and decided to try the gluten-free thing. I was getting to the point where I could not envision wanting to live the rest of my life with that sort of cycle of pain. Since January 8, I've been doing it.

It's probably too early to tell, but here's what I've noticed.

- I haven't had a pain-BM-attack since then. Sometimes they didn't come for 3 months though. But...mid January, I was horrificly stressed about something. And when I get stressed, it goes STRAIGHT to my stomach. Like someone pressing a button that releases liquid stress into my system. And - to my shock - it did NOT cause one of those 'attacks.' Those attacks used to come even with SLIGHT stress before (stress, grease, or just after every 3-5 weeks). And this thing was constant releasing of those stress-hormones for a good 5 days straight. So I was 100% expecting to have an 'attack.' But, it didn't happen. Nor the next week, or the next...etc This encourages me for sure.

I haven't even felt that tinge of snaking pain that usually harkens an attack but once or twice in these past months.

Then...within the first two weeks, my C shot up really bad. Now I'm taking Triphila and watching my dairy and rice intake, and it seems to be regulating. But some people on here said how that could be a sign that I do have celiac/gluten-intolerence, if gluten was the thing pushing me along! (albeit painfully!)

Then - guess what? An aunt of mine was diagnosed with Celiac's. Suprising everyone.

Lastly - I've 'suffered' from (mild enough, but still there) acne for the past 10 years. When I discovered the magic of facial foundation back in high school, I never left the house without it on my face. Then, in spite of myself - these past 2 days, I didn't even put it on! Because my face was 'clear' enough for my approval! That's a definite first in 10 years.

So...are these things just coincidences, or might it point that being gluten-free IS really helping me? And maybe that gluten was causing the problems before?

On the other hand - I'm also a rather irritable and uncheery sort of person. In the sense that, it actually seems to take effort for me to be happy, and then when I am, it usually doesn't last very long lol(if that makes sense.). Despite whether there's something bad going on or not in my life. And I am tired almost all of the time. I haven't noticed a change in any of those things, for what it's worth, and I know depression can be a symptom or effect or whatever of Celiac's. Which is why I mention it. ...but maybe I just need to be patient there... ;)

I think I'm encouraged. The restaruant - social-life - aspect of this gluten-free thing has been somewhat troubling and saddening...but, to think that this COULD actually be "it"...I am glad for that.

This thing turned out to be really long, lol. Sorry.


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



Celiac.com Sponsor (A8-M):



mouse Enthusiast

I am glad that you have noticed such a change. I would definately stay gluten-free, especially since your aunt was diagnosed with Celiac. You can have a false negative on the blood test, but not a false positive. The diet sometimes is the answer for Celiac disease or gluten intolerant.

Keep up the good work and the changes will keep coming. Each of us heals at different rates.

Tritty Rookie

I'm so glad you're feeling better :)

How can you have a cheery attitude when you're having to live life like that!!

I noticed everything else getting better first - and now my attitude (now that I feel healthy) just in the last few days is coming with it :) So keep positive - it'll come!!

DownWithGluten Explorer

Thanks for the encouragement, Tritty and mouse! It was weird about my aunt being diagnosed. To our knowledge, before all this, "no one" had Celiac in our family. (But it's not like they were ever tested, either.) I know my mom's aunt has a daughter with Crohn's...but that's it. But then recently my doctor thought my aunt needed to be tested, and they found Celiac in her.

And Tritty, glad to hear your mood has started to improve, lol! And as for "How can you have a cheery attitude when you're having to live life like that!!" I know, exactly. Tell that to the rest of the world! ;)

DebbieInCanada Rookie

I think those all sound like promising improvements. Given the length and seriousness of your illnesses, it could take a while for your body to heal.

I think staying gluten free certainly won't hurt anything, so keeping with it for a few more months should definitely give you an indication of whether things are continuing to improve.

I found my bad moods where both related to just feeling so tired and crappy for long periods of time, as well as definely chemical imbalance from the gluten/corn itself. Once I got all of that out of my system and felt better physically, things improved drastically.

Hope things stay on the upswing for you!

Debbie

JNBunnie1 Community Regular

Hi Aura, I agree with everyone, those are very promising signs of improvement. I actually took almost a year of healing until my mood started to really elevate. I also had a few setbacks, like breaking up with my boyfriend and my Dad contracting leukemia, so I think I would have been 'happier' sooner if all that hadnt happened. But you actually sound pretty darn well adjusted, so if you're not feeling 'happy' I suggest happy food, which isn't what you probably think it is. Eat lots of fat! Get as much avocado, coconut oil (unrefined, try Spectrum essentials), nuts (esp almonds), and ORGANIC, preferably free-range/grass-fed meat into you as possible. I actually really like diced avocado w/scrambled eggs & salsa. And as long as the chicken is organic, make roasted legs and try to eat the skin. Find a butter that says grass fed on it (it should be VERY yellow) and use that a lot on gluten-free toast and to cook your veggies and eggs with. All these fats will heal your body and give you brain food. The cells in your brain are actually lined with lipids, cholesterol. You just need it in digestible form, instead of the poisonous stuff, like McD's. Oh, and organic, plain yogurt. Stonyfield is a good place to start, but their milk isnt grass fed so it has a high sugar content, if theres a health store near you try Seven Stars Farms, it tastes a little bitter, I add applesauce!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,666
    • Most Online (within 30 mins)
      7,748

    bailey1023
    Newest Member
    bailey1023
    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

    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • 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.