Jump to content

  • 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):

Negative Tests- Good News, But Sooo Frustrating!

Kelsie

Recommended Posts

Kelsie Apprentice
Kelsie
Posted

Hi,

 

So, my testing is not going well (or going well, depending how you look at it lol).  I've had a colonoscpy, endoscopy and celiac blood work (although the GI doc only ran one blood test): ....all negative.  I am staying on a gluten diet, despite my symptoms, as my Rheumatologist may want to send me to another GI for a second opinion.

 

Continuing Symptoms:

- insomnia- most night I can't get to sleep until 1-4 am

- morning fatigue, even on night where I can fall asleep around midnight and get 7 hours sleep, I'm a zombie until 2-3 pm, then I wake up and feel more normal

- BM's- not regular, foul smelling, sticky, sometimes yellow.  Yesterday was almost grey like and looks like clay! ewww

- swollen eyelids in the morning, sometimes with hives

- headaches, occasional migraine with flashing lights when I close my eyes

- gas, bloating, cramping- although this doesn't always happen

 

Before I started my testing, I was gluten free for a long time, with the occasional cheat meal.  Then I got really sick....constant diarrhea for like 8 weeks, going to the bathroom 12-15 times a day.  I was totally drained, lost about 20 lbs.  During that 8 weeks, prior to testing, I was only able to eat rice and oatmeal.  I did a three week gluten challenge before my endoscopy.  But when the blood test was done, I was more or less Gluten free.  I am starting to think that wasn't enough of a gluten challenge?

 

Hopefully my RA doc will have a good plan, I am not sure how long I can continue eating gluten, but I really do want answers :(

 

 

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

Celiac.com Sponsor (A8-M):


BlessedMommy Rising Star
BlessedMommy
Posted

I'm sorry that you don't have a clear answer! Could you stay on gluten long enough to get the rest of the blood work run? It's best to run all of the blood tests, if only one is run, it may miss celiac.

 

If the doctor refused to order it, you can order it through a private lab and self pay. 

Kelsie Apprentice
Kelsie
Posted
  • Author

Thanks Ruth, yes I am staying on gluten until I can see who the RA doc's will be sending me to for a second look.  I will request the full blood work at that time, I just hope its not months from now that I can get an appt :(

Archived

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

Go to topic listing

  • 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. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Jmartes71's topic in Dermatitis Herpetiformis
      2

      Skin issues

      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr. https://my.clevelandclinic.org/health/diseases/morgellons-disease
    2. nancydrewandtheceliacclue
      - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    3. trents
      - trents replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    4. nancydrewandtheceliacclue
      - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

      Hello Russ! Thank you so much for your reply. I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal...
    5. Russ H
      - Russ H replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,046
    • Most Online (within 30 mins)
      10,442
    Urquhart
    Newest Member
    Urquhart
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Skin issues

      By Aretaeus Cappadocia · Posted

      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      Celiac flare years after diagnosis

      By trents · Posted

      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      Celiac flare years after diagnosis

      By Russ H · Posted

      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
×
×
  • Create New...