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

Waiting For Test Results - In Denial


PMC

Recommended Posts

PMC Newbie

Hello everyone,

I'm new to this group but have been reading here for a while now. I had my endoscopy last Wed the 9th, my blood tests came back "weakly"positive. The doctor said everything looked ok but I was a little inflamed in the intestine. I apologize for the long post here, I am so overwhelmed!!

I think my problem started about 2 months ago while on a cruise, I got sick - really sick, they think with rotavirus. After several weeks I still felt very bloated. Prior to this illness, I had what I thought was mild IBS symptoms like loose or hard stools, gas, sometimes excessive and occasionally some nausea.

After reading many of the posts, I think back and realize that I've had many vague symptoms as well, I was diagnosed with Hashimatos about 15 years ago which is probably a little bit before the IBS symptoms began.

I started gaining weight about the time I was diagnosed with thyroid condition and have lost and gained many pounds since then. For the last two years I have been mostly eating healthy food, exercising and losing weight, though it has been extremely difficult for the weight to come off, sometimes taking weeks to lose a single pound. I did eventually achieve a 50 lb weight loss, though it is beginning to come back now!

When I was child I had major problems with canker sores and scalp lesions, both went away following a teenage pregnancy but have recently started to return (not nearly as bad though). I also had very thick almost unmanageable hair back then whereas now it is extremely thin. It has been falling out for years now, though never any bald spots, just thinning. Since my mom has the same issue, I just thought it was hereditary. I had a 5 year bout with migraine headaches but they too stopped suddenly. I do now have issues with brain fog, memory loss, anxiety and depression. I am 46 years old.

I wonder if I'm reading too much into some of the vague symptoms as many of them did stop suddenly, is that normal, could it be that the symptoms change course and manifest in another way? I'm curious if others had any of the same issues with symptoms suddenly stopping? I feel like my symptoms are not as severe as many people here, but also notice that I have a some degree of symptoms from digestive, neurological and skin. Does anyone else have this too?

I was planning to go gluten free after my endo, even doctor agreed the only way to know for sure is to try the diet. Instead I find myself indulging more than ever on foods that I fear I will never be able to eat again. They are all foods that I have significantly limited since adopting a healthier lifestyle, and because I do not notice any significant symptoms after eating I'm now trying to rationalize the notion that maybe this is not my problem after all and if my test results come back negative, I'm off the hook. Or I keep telling myself that I can reduce my intake slowly and see if I notice a difference before going cold turkey.

I think I'm in a state of denial now and I'm getting caught up in rationalizing my symptoms as typical for my age, as most of my symptoms seem much less severe than many of yours! I should also add that my family will not take this seriously if I get a negative biopsy and even have my doubts about their level of support with a positive biopsy.

Anybody willing to share their experiences would be appreciated!

Thanks!


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



Celiac.com Sponsor (A8-M):



divamomma Enthusiast

A weak positive is still positive.

As far as not noticing anything when eating foods you cut out....celiac disease causes intestinal damage regardless of how you feel. You could still be causing damage even though you feel OK.

love2travel Mentor

Until I found out for certain I had celiac disease (bloodwork and biopsies) I was denial, too, because I didn't feel sick at all! I was convincing myself that the test results were mixed up with someone else's or that there was some technical error. Nope! And I wondered how this could happen to someone who teaches cooking classes and plain just loves food so very much, traveling all over Europe to the best restaurants. It just didn't make sense. Sometimes I still get that feeling because I don't feel better off gluten but I refuse to cheat regardless. Denial is a crazy thing so I truly do feel for you in your challenging situation.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,807
    • Most Online (within 30 mins)
      7,748

    CeceNV
    Newest Member
    CeceNV
    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

    • Russ H
      The anti-endomysial antibody test is an old test that is generally reported as positive or negative - a lab technician looks down a microscope to check for fluorescence of the sample. It is less sensitive but more specific for coeliac disease than IgA tTG2. Hence, it is not "barely positive" - it is positive. People diagnosed in childhood recover much more quickly than adults.  I would look at testing all 1st degree relatives - parents, siblings.
    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
×
×
  • 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.