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):

Blood Test Question


Lillyth

Recommended Posts

Lillyth Explorer

Okay - I've tried to post a new topic & it doesn't seem to show up - so I'm posting it here too...

I got my tTG test results back - they say I'm negative, but I've been gluten free.

She (the doc) only did the tTG because she said the celiac would show up on that one, regardless of my consumption of gluten.

She also reiterated that the rash I have does not look like DH - if I had that it would be in little red clumps (which it was before I went off gluten), and that if I had DH it would be on my elbows.

"Good News!" she said, "It doesn't look like you have celiac."

That doesn't sound so good to me, because if it's not celiac, then I need to figure out what else out there could possibly give me all the symptoms of it - weight gain, distended tummy, excessive gas & bowel activity, extreme fatigue, and major break-outs on my back any time I use shampoo or conditiner with wheat in them.

I guess my questions are 1) do I need to be consuming gluten for the tTG to come back positive, and 2) if I don't have celiac, what the hell IS wrong with me?

TYIA

Lil


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



Celiac.com Sponsor (A8-M):



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. - Aretaeus Cappadocia replied to yellowstone's topic in Coping with Celiac Disease
      2

      Hypoglycemia, ketones in urine and weight lost. I need advice.

    2. - knitty kitty replied to yellowstone's topic in Coping with Celiac Disease
      2

      Hypoglycemia, ketones in urine and weight lost. I need advice.

    3. - Sheila G. replied to Sheila G.'s topic in Related Issues & Disorders
      11

      No red meat

    4. - yellowstone posted a topic in Coping with Celiac Disease
      2

      Hypoglycemia, ketones in urine and weight lost. I need advice.

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

    • Total Members
      134,002
    • Most Online (within 30 mins)
      10,442

    Boikanyo William Mompati
    Newest Member
    Boikanyo William Mompati
    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
      Your post doesn't mention if you are seeing Doctors about this and what they had to say, or if you are just trying to manage it by yourself. If you aren't getting medical support, that is the first place to go. On the other hand, if you've been on a diagnostic odyssey with Dr after Dr being perplexed, consider getting your genome sequenced (search for "whole genome sequencing"). It's not guaranteed to get you an answer, but if your symptoms are caused by a genetic condition you might get the answer that is stumping standard differential diagnosis. These days there are quite a few companies offering this service. I wish I could tell you which one was best but I've been out of that field for a decade. Talk to your Dr about this and see what they think. Price is probably ~$500-$1,500 including the sequencing and detailed reports. Sounds like a lot, I know, but consider that 25 years ago just the sequencing (no reports) cost $2.7 B and took 3 years to complete.
    • knitty kitty
      @yellowstone, You poor thing!  I'm not a medical doctor, but it sounds like "Refeeding Syndrome".   I suggest you seek medical attention.   Refeeding Syndrome occurs when your body doesn't have enough of the necessary vitamins, especially Thiamine, to turn sugars (from the fruit, juice, and honey) to turn provide energy.   This can occur in Malabsorption due to Celiac Disease.  Malabsorption prevents the absorption of B vitamins, especially Thiamine. The B vitamins and Thiamine cannot be stored long in the body.  When you run out of Thiamine, your body burns fat for energy which produces the Ketones, hence your weight loss. With medical attention, Thiamine and other B vitamins need to be replaced before giving any more sugars.  Doctors can give you an IV containing B vitamins including Thiamine, called a "banana bag".  Riboflavin  Vitamin B2 causes the yellow color.   Doctors can also monitor your electrolytes which can become unbalanced and cause further serious health issues. I've experienced Refeeding Syndrome.  It's very scary.  Health can deteriorate quickly in Refeeding Syndrome.  It's correctable, but complicated.   I strongly urge you to get professional medical attention as soon as possible.   Our prayers are with you! https://my.clevelandclinic.org/health/diseases/23228-refeeding-syndrome Thiamine Deficiency in Self-Induced Refeeding Syndrome, an Undetected and Potentially Lethal Condition https://pmc.ncbi.nlm.nih.gov/articles/PMC4295429/ Keep us posted on your progress!
    • Sheila G.
      Thank you for sending me this information 🙏🏻❤️✌️
    • yellowstone
      Due to malabsorption, I have hypoglycemia and I excrete ketones in my urine. I am losing a lot of weight. I don’t know what to do — I drink juice, eat fruit, take honey, but I don’t notice much improvement. Any advice?
    • glucel
      I ate sprouted buckwheat and hard boiled egg last night instead of cereal and got extra 1/2 hour sleep but more importantly feel better this morning. I do sleep in cycles that seems to rotate btwn 3 and 6 hrs but I will monitor next time I make a pot. Bwheat is a complete protein with good amounts of thiamin, magnesium, fiber and iron. High carb but much lower glycemic and much healthier than refined flour cereal.
×
×
  • Create New...