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 Symptoms--Very Frustrated!


BuckeyeGirl

Recommended Posts

BuckeyeGirl Newbie

Hello- I want to share my story to see if others have had similar symptoms and experiences. My GI issues began about 5 years ago when I was diagnosed with severe acid reflux. At that time, my only symptom was losing my voice and frequent coughing and throat clearing. After diagnosis and starting acid reflux meds, I started having more of the traditional symptoms of heartburn, pain, and discomfort. Over the years, I've tried every single acid reflux med on the market with no improvement in symptoms. The doctors have been stumped by it after numerous upper GI endoscopies to rule out H. plyori, strictures, etc. I've finally given up on meds (they seem to make my symptoms worse) and seem to have found a happy medium with taking rolaids, etc. as needed.

About 2 1/2 years ago, I transitioned to a vegetarian diet. Not long after, I started noticing a difference in my stools- much, much larger, although still very formed- and I started having extremely bad gas all of the time. I attributed this to the change in diet and eating more fiber and beans. Over the past year, the gas has continued to worsen and I've noticed abdominal bloating. I've also had belching, which is a change for me. Over the past year, I've also become lactose intolerant. I first noticed an issue with the milk when I suspected it was causing my skin to break out and I was having abdominal bloating and discomfort. I was also having intense cravings for milk and I thought it would be a good idea to cut it out of my diet. I was still able to tolerate cheeses and yogurt though.

About 3 weeks ago, I started having diarrhea. It came on out of the blue and I thought that perhaps it was something that I had eaten or a stomach virus I caught. It is happening about 3-5 times per day. When it became clear it wasn't resolving, I visited my doctor who tested me for the following to rule out celiac disease and other issues:

Gliadin AB IGA

Tissue Transglutaminase I

Tissue Transglutaminase

Endomysial AB

CBC w/Plat

Stool Culture

Fecal Lactoferrin

C-diff

Ova and Parasites

The doctor's office called today and said all tests were negative and the bloodwork was within normal limits. I will be able to obtain a copy of the actual results on Friday (I asked if the IGG or IGA were elevated at all and was told no). I've been trying a trial of gluten- free and dairy-free after the doctor's appointment last week. I've also started taking a probiotic. It's been 4 days and I'm not noticing much of an improvement. On Monday, I was feeling good and had no diarrhea or bowel movement at all; Monday night, I went out to eat dinner and ordered a salad. I suspect there was gluten in the salad dressing, but I'm not sure how much a small amount of gluten would affect me at that point (it had only been 2 days since going gluten free). Tuesday (yesterday), I felt extremely ill and had several bouts of diarrhea and abdominal cramping. Today, the diarrhea continues.

Other symptoms I have had throughout my life (I am 27 years old):

-Pre-teen- teen years: Unexplained swelling and pain in the finger joints. Arthritis ruled out.

-Puberty-present: Unexplained swelling of an inguinal lymph node.

-Early 20's- present: Ovarian cysts that spontaneously resolve

-Early 20's- present: Migranes and frequent headaches that have become progressively worse.

-Last 3 years- present: Fatigue that has become progressively worse. Anemia ruled out. Doesn't matter how much sleep I get, I always wake up tired.

-Early 20's- present: Seasonal allergies/chronic congestion

Over the past few years, I have been generally feeling very unwell. I have frequent colds/viruses. I also get fungal infections very easily (I've had a reoccuring fungal ear infection for the last few years and several vaginal yeast infections). I am a very active person that has always followed a healthy diet and taken good care of myself, so I don't know why I feel the way I do. I've been taking a quality multi-vitamin for several months.

If anyone else has had similar experiences and has discovered that they are gluten intolerant, please let me know. I am praying that I can find an answer soon.


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



Celiac.com Sponsor (A8-M):



BuckeyeGirl Newbie

I forgot to mention other issues that I have-- extreme PMS, cramping, mood swings, pain, etc. Also, I've had issues with anxiety and panic attacks as well. I'm an athlete and every time I get injured, it takes forever to heal or I have nagging injuries that never fully heal.

Of course, I do not know if any of these are related and there is no way of knowing for sure...I just want to throw them out there to see if these are common symptoms for those with gluten intolerance or celiac's disease. Thanks!

BuckeyeGirl Newbie

And- I've thought of some more symptoms that I think may be important. Sorry, but there are a lot! I've had "bladder" problems since my teen years. Frequent bladder infections and then frequent urination, urgency, etc. WITHOUT an actual infection. This was eventually diagnosed as cystitis (or "spastic bladder") and I was on Ditropan for awhile. I eventually found an herbal remedy that takes care of it for the most part, but it flairs up every once in awhile. Thanks for reading.

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.