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

Frustrated

oceanmelissa

Recommended Posts

oceanmelissa Newbie
oceanmelissa
Posted

Hello,

My name is Melissa and I am 31 years old, for the past 12 years or so, I have been struggling with constant stomach issues. I have the following chronic issues: nausea, loose stools, stomach pains, bloating, migraines and loss of monthly periods. I do suffer from cysts on my ovaries - PCOS. I have had almost every test done under the sun over the years and have been admitted to the hospital several times for what was suspected gull bladder attacks but it has never been removed. I've been told over the years that I have IBS, Fatty Liver, Acid Reflux - you name it I'm sure its been told to me. I've even been described once in the hospital as a "medical mystery". Recently, my neice has been diagnosed with biposy positive Celiac Disease which made me start to wonder more about my issues possibly could be Celiac related. I started the process of investigating with the routine blood test which came back negative and my levels were so low that my doctor said they would never grant an invasive test like a stomach biposy for someone exhibiting such low levels. I've just decided that starting December 1st I am going to begin eliminating wheat from my diet to see how I'm feeling.Without going into explicit details, I was wondering if anyone out there experienced anything like this? I just want to start feeling better sooner than later and I'm at my wits end and feel like this is the final step and if I dont start feeling better than what?? I'd appreciate any feed back from anyone.

Thanks,

Melissa

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

Celiac.com Sponsor (A8-M):


Marilyn R Community Regular
Marilyn R
Posted

Hi Melissa, and welcome to the forum! :)

I am undiagnosed but went gluten-free because I was literally at witts end with medical and psychological issues, none of which correlate with what you've gone through.

I'm feeling so much better, but it took awhile, and there were some ups and downs.

It can't hurt you going gluten-free, so try it and see! It sounds like you're heading down the right road to me.

oceanmelissa Newbie
oceanmelissa
Posted
  • Author

Hi Melissa, and welcome to the forum! :)

I am undiagnosed but went gluten-free because I was literally at witts end with medical and psychological issues, none of which correlate with what you've gone through.

I'm feeling so much better, but it took awhile, and there were some ups and downs.

It can't hurt you going gluten-free, so try it and see! It sounds like you're heading down the right road to me.

Hi Marilyn,

Thanks for your positive words of encouragement, what have you found to be the biggest challenge for you so far in going gluten free??

Metoo Enthusiast
Metoo
Posted

I am undiagnosed also, but after years of excruciating stomach pain, I had a negative blood test ...and my doctor much like your said no doctor would do the biopsy since I don't have severe symptoms. (I have an aunt and 3 cousins recently diagnosed)

So 4 weeks ago I went gluten free...I feel 80% better! Like I had no idea how bad I felt until the last week. I am going to test gluten again in a few weeks to see if I can get stomach pain again...but Thanksgiving I realized what a Full Stomach was supposed to feel like...there wasn't any pain! I have a lot more energy and everything is just so clear! It's weird!

I am keeping a food journal for 3 months also so when I go see my doctor I have some evidence for him...but at this point it's getting hard to imagine ever going back to gluten. I just feel so good finally!

Di2011 Enthusiast
Di2011
Posted

Hi Melissa and welcome.

I'm not diagnosed celiac but do have (undiagnosed) DH which is clearing from being gluten-free.

Your symptoms are very similar to other members of this forum. And you are genetically much more likely to develop or have celiac (I think the stat is 1 in 22 if you have close relatives diagnosed). If, as you seem to suggest, you don't need an official diagnosis then go gluten free today!!

I have had a long list of issues that have resolved these past six months of being gluten-free, many of which I thought were "normal" or just because I was lazy/unhealthy/miserable. I no longer have bloat/constipation, week long heavy periods, hyperglycemia (I didn't even know this word until it stopped and I read about it on this forum!), brainfog, weight is now near normal (I was overweight most of my lifetime) etc etc etc.

I hope gluten-free helps you as it has for me. It took me months to get my food intake right (I can't handle much of any processed food, even gluten-free). When I went gluten-free it seemed like any food didn't go down very well. It can be tough but stick with it. Everyones recovery/response is different so be patient and get on here to read/educate yourself. You are welcome to rant :)

oceanmelissa Newbie
oceanmelissa
Posted
  • Author

So I am on day 4 now and I cannot believe how great I feel already!!! I have sooo much more energy, my chronic nausea is GONE, no more stomach pains and I don't feel tired and I even sleep better - the strangest thing was after 1 day of no wheat I got a period and I have not had one in a year!! They always said it was PCOS! I can't believe I am 31 and now can finally feel better!!!!!

Di2011 Enthusiast
Di2011
Posted

Sounds like you are going to have a good recovery.

Welcome to the gluten-free club :)

Keep reading. And watch out for mistakes and tempations. Don't hesitate to get on here if you have any hiccups along the way. This forum has been a saviour many times for me.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,847
    • Most Online (within 30 mins)
      7,748
    rossick11
    Newest Member
    rossick11
    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

    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Do you or anyone know alot about ibuprofen  I wasn't sure if I was eating too much apple sauce.   Something is making my pain so much worse  I'm referring to the intense pins and needles in my feet and lower legs.  Jaw actually has tardive dystonia and muscle spasms throughout my back Almost like an opposite effect that a pain reliever would do. I'm fairly new to this. Whatever is going on seems to be worsening  Do people get a withdrawal effect from gluten?  It's extremely painful 😖  I'll post that question or research on the site  Thank you everyone for responding 
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

    • Colleen H
      Oh my goodness medication causing pain !!!!

      By Colleen H · Posted

      I think I found a huge culprit for severe reactions to create worsening of my c symptoms. Do people with celiac have sensitivity and /or have opposite reaction to certain medications Where can I find a list ?  I'm new here I'm.wondering why I am getting worse when I take certain medicine...the burning feet.  Rebound muscle pain so intense  How many people get opposite effects or have a horrible attack after these meds
    • Colleen H
      Stomach burning and neuropathy

      By Colleen H · Posted

      Does anyone know if that includes scrambled eggs and healthy smart butter (,gluten free) I add a very tiny amount of margarine less than a teaspoon.  I did no't have any bread    It just seems like no matter what I eat my stomach and nerves over fire and here comes a host of horrible symptoms. My lower abdomen feels horrible, my right leg thigh muscle.. very odd. Jaw pain. Burning feet , joint pain , you name it  The anxiety just creeps up into brain fog. I don't think I could explain this to anyone who is unfamiliar.  Also,  I most likely will not remember posting this until I check it.  This is highly unusual for me because I have an excellent memory.  One weekend before I knew anything about celiac I lost an entire weekend from severe brain fog, confusion, pain, etc.  I honestly thought I was losing my mind. When I think back I recall eating a lot of PBJ sandwiches and turkey sandwiches.  Once again did not know about gluten.  I was just too sick to cook. Do people fast during attacks ?? It seems horrible to keep going through this. I hope I'm not causing my own problems... I wonder if I should fast because I'm not eating gluten .  Chicken ,  scrambled eggs no milk , canned carrots,  gluten free low sugar low fat Greek yogurt which I already posted about 😞 Any suggestions I am open... I am bedridden when this happens to me.  Thank you Celiac community. 🙏🏻❤️      
    • Juliane
      Stomach burning and neuropathy

      By Juliane · Posted

      Yeah, that sounds super familiar. When inflammation levels are high — especially at the start of changing your diet — the body often develops a fructose and lactose intolerance. Unfortunately, the only thing that really helps is cutting out anything that isn’t lactose-free or that contains sugar. So basically, stick to meat, veggies, fish…
×
×
  • 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.