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


peggles

Recommended Posts

peggles Rookie

I found this site a couple of weeks ago and it's great. It was suggested last month that I most likely have celiac disease. I tested highly positive on my blood work and was referred to a GI doc. I am going in tomorrow for an endoscopy. Since I am anemic and there is a history of colon cancer in my family (my grandfather) they want to do a colonoscopy too. I was really suprised when the doctor told me that celiac disease was most likely the problem. I had only heard of it when I was researching information on food intolerance. No one in my family has ever been diagnosed with this.

Looking back there were probably symptoms that I have had for quite a while that I have just brushed off. I have always been thin and I have had a lifelong tendency to be slightly anemic (now I'm really anemic). Back when I was a teenager and through my 20's (I'm 43 now) I occassionally would have episodes of intestinal pain that were unexplained. I couldn't seem to attribute these attacks to any specific thing I had consumed. The only time I ever did see a doc about it (back when I was in high school) he told me I probably just had gas and told me to take a teaspoon of Mylanta every day. What a jerk.

About 3 years ago I problems with diarreah for about 2 months. I went to a doctor who apparently was not tuned into the idea of celiac. Her only suggestion was that if I continued to have problems that I should see a GI. Well, I just started to mysteriously feel better a few weeks afterward, so I was just convinced that it was the stress that I was under at that time.

I don't always have obvious symptoms like diarreah but that is what finally drove me to believe that I had a problem and that it wasn't just "all in my head". I had been having chronic problems since February that seemed to let up once in a while. I finally couldn't take it anymore and was able to see a different doctor. She seemed to be tipped off right away from taking my history and ordered the antibody panel. When she called me with the results I got off the phone and cried. It was such a relief to have someone tell me "YES there is something real going on with you!! You aren't nuts!!"

Now that I have learned more while I have been waiting to get in for this biopsy I am convinced that the results will be positive. I also suspect that my 14 year old daughter is too and will discuss it with her when I take my daughter in for a physical next week. I'm wondering if my other two kids should be screened too even though don't have symptoms.

Peg


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



Celiac.com Sponsor (A8-M):



rattaway Newbie

Welcome Peg. Definitely have your kids tested. If they are gluten intolerant, you are sparing them years of damage by getting them tested now and on the gluten-free diet rather than waiting until they have so many symptoms that they are in agony. That is if they have it. Guess you won't know until they are tested though. Best wishes to you and your family. All the celiacs here are awesome and so helpful.

Rian

lovegrov Collaborator

ALL first-degree relatives should be tested -- parents, kids, and siblings. All mine were and my 70-year-old father came back highly positive despite only minor symptoms.

From what you've described, you have celiac, no matter what the biopsy says. With highly positive tests and symptoms, it's nearly a 100 percent sure thing even without a biopsy.

Sometimes biopsies come back negative either because they didn't take enough samples or because you quit eating gluten (did you?). The ultimate proof after the biopsy is to go gluten-free and see if you improve.

richard

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

    3. - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    4. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    5. - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,470
    • Most Online (within 30 mins)
      7,748

    Elkay008
    Newest Member
    Elkay008
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.