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

I Will Hopefully Find Out Soon...


Stylo

Recommended Posts

Stylo Rookie

Hey everyone!

Not sure where to start with this, I thought this would be the best place to post as there is no specific new members area. And this does have to do with coping as well.

A little background information, I was 125 pounds and 5"2 in high school. After high school, my weight started shooting up in 10 or 20 pound increments within short periods. At the highest I got up to 194 pounds. After high school, if I went out drinking I never felt bad after. I started to really enjoy whiskey and at some point I started feeling violently sick even if not a lot was drank. I would go out until 1am or so, come home, fall asleep, and always after a couple hours I would be up feeling ill. I couldn't sleep if I wanted to because of how sick I felt. Seemed like I was finally experiencing this hangover others had mentioned.

Now forward to today, I never feel good. I take medication for anxiety, the weight is very difficult to try and get off, I my stomach is constantly upset, and I have gross "bathroom" issues. I've been lurking here and reading what others are saying, I think I might have a wheat or gluten intolerance.

So much of what others say seem true for me. My mom got diagnosed with IBS as she has horrible stomach issues as well, she's also a diabetic. One of my friends got diagnosed as Celiac about a year ago, and he feels great, he doesn't have bathroom issues, and it's explained many of his health issues.

I'm going to see a doctor either Thursday or Friday, and I understand tests can be pretty inconclusive unless you go off it and see for yourself. I was on atkins at one point for about three weeks, I felt fantastic but lost no weight, I could not handle not having any carbs, limited veggies and no fruit.

I know this is a long post, but everything is just kinda piling up on me at once and I'm feeling overwhelmed. All these symptoms I see others having, I have. I don't want to diagnose myself based on that though.

As a final thing, I'll mention that I ate noodle soup for breakfast yesterday and felt naseous and sick to my stomach, then after having a sandwhich for lunch I had horrible stomach pains, and then having pizza for dinner with multigrain crust they came back with a force. The fruit I had for a snack had no effect that I could tell.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

It sounds like both you and your Mom should get tested. The fact that you felt great on the Atkins is IMHO significant. Ask your doctor for a full celiac panel and if you want an endo with biopsies looking for celiac. After you have done all the testing you choose to do give the diet a good strict try for a couple of months. That really is the best test there is right now as both blood and biopsy do have a fairly high rate of false negatives.

Stylo Rookie

Thanks for your response! I notice this was moved, I apologize for putting it in the wrong section.

As a test today I had a salad for breakfast and sushi with brown rice for a snack (because salad just isn't enough sometimes). I felt pretty okay, and now it's lunch and I've had half a tuna fish sandwhich and now I feel pukey.

I actually quit eating tuna for a couple months as I thought the way I felt was due to mercury poisoning as I had a tuna sandwhich every day for a year. I'm back on it as I feel the same.

I have an appointment with my doctor tomorrow at 10:30 to speak with him about this. Regardless of testing, as I know it's mostly not definitive (depending on the test done), I plan on going on a wheat/gluten free diet as I know that will show the best results.

I'm glad I found this place. I want to feel normal, and I feel sad everytime I read about someone being misdiagnosed for most of their life and missing out on what could have been.

The sad thing is, no more whiskey *cry*

GFinDC Veteran

Hi, Stylo,

If you want to be tested you should not stop eating gluten yet. The antibodies will disappear from your blood stream pretty quickly and then the test won't show anything. Of course the may not show anything anyway, but at least you are giving them the best chance by staying on gluten until all testing is completed.

Sometimes an endoscopy is done also to take 4 o r5 biopsy samples of the small intestine. They can look at the samples under a microscope to check for damaged villi. Same deal, you need to keep eating gluten until the endoscopy is complete.

There is also Enterolabs testing which can detect antibodies but can't diagnose celiac. But if you are making the antibodies there is definitely something wrong.

  • 2 weeks later...
Stylo Rookie

Thanks for the advice, I didn't go gluten free until the day of my blood tests. I was feeling anxious about feeling better now that I think I know what it is. It's been almost two weeks now since I've gone gluten free, and the doctor said he would only call if there was something actually on the test other than normal results.

Well, I got a call Saturday and they wanted me to come in. It is drop in Saturday and Sunday so I opted for an actual appointment during the week. I'm meeting with the same doctor tomorrow at 4:40.

I'm nervous though. They took three vials and he ordered a lot of tests. I'm gracious for how thorough it seems he was. He was quite sympathetic though was not very thorough on dietary information which I've gotten mostly from this site.

Wish me luck!

Stylo Rookie

Hey guys, just giving an update and wondering about these results.

I got my blood test results yesterday, I tested unlikely for Celiac but I've had such a positive response to being gluten free for two weeks now. I did have a high white blood cell and platlate count though.

I've made my decision to go gluten free and I'm sticking with it because for the first time in years I don't have a puffy huge stomach by the end of every day, I don't get intense stomach pains, and my diarhea has stopped. I'm considering cutting out dairy as well as I notice that will still upset my stomach too. Talking to my mom and finding out she has cut out most wheat products and dairy as well and she is feeling better gives me more positive hope as well.

I was wondering what you guys thought about my results? He wants me to get more blood tests due to the high white blood cell count, though he said it was just a point higher than normal and I may have been sick that day.

WheatChef Apprentice

What were the exact tests you had done and what were the numbers?


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



Celiac.com Sponsor (A8-M):



Stylo Rookie

I don't have a copy of it, he showed it to me on his computer. I know that my white blood cells and platlates were a point above what is considered normal. Everything else was within the normal range according to him.

Edit: I just realized I didn't state what tests were done. I hate to sound ignorant, I tried to educate myself with the use of this site as much as I could before I went, but all I know is he did a liver screening, and checked my lga, and there was something else. Sorry for not giving all the info!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,561
    • Most Online (within 30 mins)
      7,748

    lamps
    Newest Member
    lamps
    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

    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
×
×
  • 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.