Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Please Help!


Guest scully

Recommended Posts

Guest scully

Hi, everyone.

I don't know if I have celiac or not, but I am now 34 and sick to death of my GI issues. It has gotten to the point where I wish that they actually did entire GI transplants. I just want to get rid of everything from my esophagus to my colon and put someone else's in. :rolleyes: I will try very hard to make this as short as possible so not to waste your time.

2002-2004 --- gained 20 pounds, chronic constipation, horrid, foul-smelling gas (like a cross between a skunk and sausages--no kidding), abdominal distention, puffiness all over, cramping, incomplete evacuation of bowels.

2004---diagnosed with constipation-predominant IBS after inconclusive colonoscopy, only blood-tested for celiac at that point, tests came back negative. After changing diet, eliminating most dairy and processed food, and adding probiotic supplementation, lost 25 pounds and felt great.

2007--- Began having frequent chest pains. 2 ER visits, a chest x-ray, a stress test, an EKG, an ECG, a HIDA scan and finally an endoscopy later, diagnosed with both gallbladder disease and GERD. Had gallbladder removed. GERD symptoms persist despite treatment and further lifestyle/diet changes.

August 2008---- Still have GERD. However, bloating has returned, along with gross,disgusting gas, severe stomach distention, alternating and chronic diarrhea and constipation, incomplete bowel evacuation, inexplicably gained 7 pounds in ONE MONTH, some nausea, fatigue/anxiety, lower body (hips, thighs, lower belly) VERY puffy. Probiotics are NO LONGER HELPING, IBS diet no longer helping.

I should also mention that in addition to having severe allergies (on immunotherapy), I have always, up to this point, bruised VERY easily, and have had a red, raised, scabby, itching to the point of burning, bumpy rash around my elbows off and on for the last year or so. I had thought it was just "winter itch", but it got so bad last year that the skin got very dark purply-red and THICK and leathery. Moisturizers and corticosteroids did not help. Finally went away but left scarring. Continue to get this rash off and on, in varying degrees, even in summer. ONLY TODAY did I find out what dermatitis herpatiformis was.

As a closing note, I am scheduled for another endoscopy and small bowel biopsy on Monday.

Please tell me what the h*ll is going on. I am so irritable and stressed out from this. It's all I think about.

Thanks,

Jen.


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



Celiac.com Sponsor (A8-M):



Jenny (AZ via TX) Enthusiast

Jen,

You may have DH. If you have the itchy bumps now, you can get the area next to them (not the actual bumps) tested for DH. If you have DH, you have celiac. (This is from the book "Living Gluten-Free for Dummies", p. 56.

Someone else with more knowledge will hopefully chime in here.

Please check the DH section of this forum.

climbmtwhitney Apprentice

Hi Jen,

I'm so very sorry all this is happening to you. I, too, have a long sorted medical history so I can relate. Definitely no fun, huh?

I am a recently diagnosed Celiac, so I'm no expert. Having said that, it sure sounds possible that you have Celiac or gluten intolerance from your symptoms.

For your biopsy on Monday....Do some reading up on it because they can be falsely negative just like the blood work. Make sure they take an adequate number of tissue samples from ALL parts of your small intestine.

Also, in regards to your rash.....Some people with Celiac disease get an itchy rash. The rash is usually on their back, butt, knees, and guess what.....elbows! It's called dermatitis herpetiformis. It can also be biopsied to test for Celiac.

Hang in there. Hopefully some answers are right around the corner. :)

Sonya

MinMin Newbie

Hi Jen,

I'm sorry to hear you have these issues. I too am going through the process of figuring out what's going on with my body. After extensive tests just like yours and the doctors not finding an obvious physical cause, I was just so exhausted and frustrated. After finding this forum, I've been given renewed hope as the symptoms match my problem completely. However testing, it does seem unlikely that I do have Celiacs - but please take note that testing doesn't completely rule out the possibility as you will discover from people on this forum.

After doing more research and talking with my GI and various specialists. Intolerances to Carbohydrates, Sucrose, Yeast, Lactose etc can also present the same or very similar symptoms to Gluten Intolerances. There are so many complex intolerances out there that are hardly known about. It appears I have a very strange combination myself that's genetic and am baffled at what changes I will need to make to my diet but I'm relieved I finally will have the answer I've been looking for after 23 yrs.

So basically, there is hope and if you haven't already and don't find much luck after specific investigation into Celiacs, give consideration to other intolerances that could be causing you these problems.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,754
    • Most Online (within 30 mins)
      7,748

    Pattycakes4549
    Newest Member
    Pattycakes4549
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • lmemsm
      With that many foods removed from your diet, what do you eat?  I also have histamine issues and migraines so that takes out certain trigger foods and high histamine vegetables.  Have allergies to coconut and issues with nuts so those are out.  I'm beginning to think I may have to remove dairy and some of the grains beyond wheat to get allergies under control.  Just having so many issues figuring out what to make at meal times.  What's a typical breakfast look like for you?  Thanks.
    • knitty kitty
      @Healthforme, No prescription needed for thiamine hydrochloride, Benfotiamine, and TTFD (Tetrahydrofurfuryl Disulfide).  They are available over the counter.   Thiamine Mononitrate is not recommended because the body doesn't absorb or utilize it well.  
    • knitty kitty
      @Zuma888,  I'm so happy you're feeling better!   Thanks for letting us know of your improvement!
    • RMJ
      HLA-DQ2 is NOT a continuum 2.01 to 2.99, but I don’t understand HLA genetics well enough to explain it further.  It is not just one gene that is either this or that.
    • trents
      Okay, I'm taking a guess here. We are used to hearing in layman terms that having either the HLA-DQ2 or the HLA-DQ8 gene, either heterozygous or homozygous, presents the possibility of developing active celiac disease. So, I'm guessing that the HLA-DQ2 gene is actually a range of variants (2.01-2.99) with HLA-DQ 2.5 being in the centerpiece of the range. I'm also guessing that "permissive" is equivalent to "possessing the possibility" to develop active celiac disease and does not address the issue of hetero vs. homozygus per se. But the fact that 2.01,2.01 is a couplet may indicated homozygousity? All wild guesses.
×
×
  • Create New...