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

Confused Please Help


suecosgrove

Recommended Posts

suecosgrove Newbie

I have had constant nausea since christman. My gastroenterologist did an endoscope and colonoscomy. He said the biopsy in my dude emu showed damage and told me I had celiac disease. He also did a genetic test on me that day. Now three weeks later and much money invested in gluten-free items he calls and says My test is negative. What does this even mean??


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



Celiac.com Sponsor (A8-M):



cavernio Enthusiast

So he called and said your genetic test was negative? Or was he saying he was actually wrong about your duodenum being damaged?

If he had your duodenum test wrong, or accidentally messed up your results with someone else's or something, then you don't have celiac disease.

If he called and said your genetic test was negative, I would still think you have celiac disease.

Most, not all, people with celiac disease apparently have a specific genetic problem that makes them prone to getting it. However, there exist people who do not have that gene/set of genes who still do develop celiac disease. IIRC, the wikipedia article actually says only 90% of people have the standard 'celiac' gene. They also list a couple of other genes that are known to cause celiac disease. I wouldn't be surprised if the lab/doctors didn't bother testing for those less common genes. (I'm actually rather surprised they did genetic tests for you at all, my doctors won't do that for me, even though I've asked about getting it.)

However, there's still the possibility you don't have celiac disease. There's something called tropical sprue which manifests like celiac disease in that it causes your villi in your intestines to disappear/become damaged, but which I don't believe is caused by gluten. The prognosis for that is not good however, they know even less about that than celiac disease.

Do you feel better not eating gluten? If the answer is at all yes, then you should continue being gluten free. Well, you should continue being gluten free regardless.

There's also a possibility that you have a candida problem. Note that intestinal candida is not a diagnosis most doctors think exist. Or they only think it exists in very sick people like AIDS patients.

Talk to the doctor again if you can.

dilettantesteph Collaborator

There are some genes recognized to cause celiac disease in Europe which are not tested for here. A negative genetic test doesn't mean that you don't have the disease. See if your symptoms clear up on the gluten free diet. If you eat more whole foods (produce and meat) it is less expensive and more healthy.

Bubba's Mom Enthusiast

In a lot of the literature they say DQ2 and DQ8 are the Celiac genes. Many dr.s thing they can rule out Celiac if you don't have those. They have found there are other genes that also can mean Celiac.

Since you have the damage in your duodenum, it would be a good idea for you to stay gluten-free.

Soo..did the Dr. say what caused your damage if it's not celiac?

Kansas Rookie

I tested negative to the gene testing, but definitely am gluten intolerant. I agree with the others, if you feel better without gluten, stay on the diet.

mushroom Proficient

If you are biopsy positive, you are celiac. Period. Doesn't matter a hoot about the genes. :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,817
    • Most Online (within 30 mins)
      7,748

    GFDF23
    Newest Member
    GFDF23
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • badastronaut
      hmm, I only had a colonoscopy. Would be interesting to have an endoscopy done then I guess.
    • Beverage
      You said the colonoscopy showed no damage. Did you also have an endoscopy? The upper colon is where celiac damage would be detected via endoscopy, not the colon.
    • trents
      Welcome to the  forum @maylynn! Have you had a follow-up endoscopy/biopsy of the small bowel to check for healing of the villous lining? If not, it's about time one was done. As Scott mentioned, I also wonder if you have food intolerances in addition to gluten. Oats (even gluten free oats), dairy, soy, corn and eggs are some of the most common ones in the celiac community.
    • Scott Adams
      Is your gluten-free diet strict? Do you eat out in restaurants? If so, you could be getting contamination, and over time that can slow recovery. You may want to get a follow up celiac disease antibody panel done to make sure that your levels have gone down since your last tests. Also, have you had various nutrient levels checked via a blood test, and have you been taking vitamin & mineral supplements since your diagnosis?  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.    Do you still have celiac disease symptoms?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • maylynn
      Hello!  I am here as a last result, hoping for some advice, similar stories, etc. When I was 17, I was diagnosed with Celiac disease. By the time we figured it out my iron levels were so low I had to get infusions, and I had lost 20lbs. in two weeks going from a 5'11 130lbs woman to a 110 lbs. Now, I am 21 and have gained 4 lbs since. Every time I eat a meal, I get three bites in and feel so full that I feel sick. I can't eat a full meal. Something else has to be wrong right? This can't just be more "normal" right? I have done test after test and no doctor in my area can figure anything else out. They have told me I most likely have shrunken my stomach by now with how little I am eating so that has to do with some of the sick feeling. What have you done to gain the weight back? Foods? Workouts? 
×
×
  • Create New...