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

My Story


karma

Recommended Posts

karma Newbie

To Who Ever Cars:

My life for the past two years has been ruined. I have been suffering from what I


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



Celiac.com Sponsor (A8-M):



Tritty Rookie

I'm so sorry to hear about all of your struggling!

I hope that thoughts and prayers from all of us here at this site (we're a very supportive group) will help you on your path to better health.

Have you been checked for any intolerances/diseases? There are a couple I think of when I read your story right off of the top of my head.

C-Diff. It can be caused by strong antibiotics or by people not washing hands, etc. My Grandpa and Mom have both had it after surgery when they were on strong antibiotics. It can be cured by another form of medicine. Open Original Shared Link - go to this link to learn more about it.

The other is what all of us here have - celiac disease or a gluten intolerance. You've come to the right place to learn more about this! Click away - hear our stories - you'll find others much like you. Helps you know you're not alone.

Good luck and let us know how you're doing!

Guest Doll

Awww! You poor guy! My heart goes out to you! We are all here for you, so please never think that you are alone. It is hard to comment not really knowing what tests have been done on you, but I also agree that you need further testing.

It is thought that an infection (viral or bacterial no one knows for sure) can trigger autoimmune diseases such as Celiac, Ulcerative Colitis, etc. My main concern is that you do not find the diet helps you. That can be a red flag that you have another problem that's not Celiac. Even people with serious damage from Celiac usually feel *somewhat* better right away on the diet. Do you know if you had a viral or bacterial infection (were you given antibiotics or not?)? Do you have any other symptoms? Did your doctor think that the damage is permanent?

I really would tell your doctor that you are feeling sicker than ever and need to find out what is wrong. I know it's not what you want to hear, but I think you need more testing. Please don't give up!

Take care,

Sarah

Guest j_mommy

Yup I would get tested for some other things.....yes it's a daunting task...but maybe you will start feeling better!!!!

WE ARE HERE FOR YOU ANYTIME YOU NEED TO VENT/TALK/CRY!!!!!!!!! WE WILL LISTEN AND BE THERE FOR YOU!!!!!

nmw Newbie

Hey Karma,

How long have you been gluten-free? It can take some time to feel better, especially since you have other damage.

Do you have your own pots, pans, cooking utensils and cutting board? If not, you could be getting some cross-contamination.

Is your family supportive of this life-change you are undertaking? It is important that they are for so many reasons, least of which is so they are conscientious about keeping your food free of gluten.

Further testing would be helpful, though some need to remove gluten regardless of what test results may be.

Good luck and keep coming back.

darkangel Rookie

There could be other things besides gluten that are causing problems for you. People who have problems with gluten often have problems with dairy, too. Other common offenders are sugar, corn, eggs, soy, nuts and peanuts. A strict elimination diet where you eat only a handful of foods you feel are safe for you can help you figure out what foods are your triggers. Do a search for "elimination diets." There's plenty of info out there.

I'd also suggest going to another gastro doctor for second opinion. A diagnosis of IBS really doesn't get to the source of your problem. You need to find a supportive doctor who's willing to work with you to find some answers and help you get some relief. You might also consider seeing a naturopathic or alternative medicine doc, if there are any in your area. I've found they're more likely to really listen and be helpful.

kbtoyssni Contributor

I'd also like to suggest probiotics. All those antibiotics have likely killed all the good bacteria in your gut, too, so you'll want to replace those.

Are you trying the diet? If so, you might want to eliminate dairy for a while, too. In fact, a very basic diet where you slowly add in different foods might bee helpful if you think you have other food intolerances.

Good luck. I'm sorry things have been so rough in recent years, but you'll get your diagnosis if you keep fighting for it.


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



Celiac.com Sponsor (A8-M):



DawnS Rookie
I'd also like to suggest probiotics. All those antibiotics have likely killed all the good bacteria in your gut, too, so you'll want to replace those.

Are you trying the diet? If so, you might want to eliminate dairy for a while, too. In fact, a very basic diet where you slowly add in different foods might bee helpful if you think you have other food intolerances.

Good luck. I'm sorry things have been so rough in recent years, but you'll get your diagnosis if you keep fighting for it.

I second the probiotics idea. I'd also suggest looking into glutamine powder. It's really good for the health of your intestines. Unhealthy intestines affect everything else in the body. I hope things will improve for you soon.

CarlaB Enthusiast

I have bacterial dysbiosis of the intestines ... I don't buy the IBS diagnosis ... that just means they don't know what's causing the problem, but as a doctor, they can't/won't really say, "I don't know."

I have an overgrowth of Klebsiella and Citrobacter bacterias in my intestines. It has caused me weight loss and diarrhea. I was tested by a three day random collection stool test.

For this problem, I am taking Uva Ursi, Oregano Oil, and Plant Tannins. I buy the first two at Wild Oats, and the third on the internet. You might research these herbs to see what they can do for the GI tract and to see if you might see some benefits from them.

I also take probiotics. Theralac and Ultra Flora, both available online.

I take saccharomyces boulardii, which is a different form of probiotic and is very good for the intestines.

Between the parasites and the antibiotics, you most likely have dysbiosis (imbalance) of the intestines. It's best healed naturally, as more antibiotics may aggravate it. I see a holistic doctor for this, and the above are what he has me taking for it. It has improved significantly after a month of this ongoing treatment ... trust me, it's very nice not having diarrhea daily!

Research it yourself, and if you can see a holistic doctor for guidance. Google the products I mentioned and bacterial dysbiosis.

I hope you feel better soon.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    2. - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    3. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    4. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    5. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,814
    • Most Online (within 30 mins)
      7,748

    ColbyBowlin
    Newest Member
    ColbyBowlin
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.