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

New here, Is it Celiac or other issues (long post)


jessz

Recommended Posts

jessz Newbie

Hi everyone! 

I am new to this site and just started reading posts on the forum and figured I'd make my own. I am 21 and have had serious digestive issues for about 6 months, which doesn't sound like a long time but it's felt like it's been much longer!  Symptoms really started 6 months ago randomly, one day I ate what I normally do but I suddenly got extreme stomach cramps and continuously had to go to the bathroom. Those symptoms continued for a week and anytime I tried to eat the stomach pain got worse. After research I figured it was IBS and I cut dairy out of my diet and tried limiting gluten and also started a low FODMAP diet. I started keeping a food log and the symptoms disappeared after following a strict bland diet and cutting out dairy and cutting back on gluten. After that I got stomach pains and other wonderful issues that go along with that every so often but they didn't last long and would come and go.  Then about 1 1/2 months ago I had a really bad "flare up" or something and couldn't eat or drink anything without having sharp and burning pains all over my abdomen. I kept having the urge to go to the bathroom and couldn't leave my house. I ended up losing 22 pounds in a few weeks and figured I should see a doctor. I went to immediate care and they did a CT and blood tests which all came back normal. They suggested I see my physician and a gastroenterologist. I just saw my physician 3 weeks ago and my GI appointment is coming up on August 9. My physician ran more blood tests and did celiac testing since it runs in my family. All of them came back normal except for the igg which was abnormal. My physician said that the gastroenterologist can follow up and confirm the diagnosis. I went gluten free for 3 weeks and just recently my symptoms almost completely subsided except for constant nausea. Once I realized that being on a gluten diet is necessary for all testing I started eating gluten again and immediately symptoms have been coming back. I have body aches, dizziness, mental fog, stomach pains and soreness, and fatigue. I'm just wondering if this could be celiac or if there are other issues as well since I get stomach pains and digestive issues from eating other foods besides gluten. Sorry for the long post but I'm just curious! Thanks for the help!!


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



Celiac.com Sponsor (A8-M):



Fundog Enthusiast

We aren't doctors, and of course you can't really know until after the endoscopy, but it sure sounds likely, based on the description of your symptoms.  Keep eating gluten until your test.  Only nine more days!  Repeat the mantra of "The Little Engine That Could"---'I think I can, I think I can.'  Do come back and let us know what you find out, either way!

squirmingitch Veteran

The gastro needs to know that you were & had been gluten free at the time of the blood test!!!!!!!!!!!!!!!!!!!!!!!!!!!! Whatever you do, continue eating gluten (not gluten light) until the endoscopy!!!!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,898
    • Most Online (within 30 mins)
      7,748

    MLucia
    Newest Member
    MLucia
    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

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.