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

Test Results-help


amymm

Recommended Posts

amymm Newbie

I got my test results from Prometheus labs. They are at the fore-front of Celiac testing. At least Celiac testing that is viewed as credible by doctors.

I tested negative on every test. However, they automatically test for the HLA DQ genes if you test negative. I tested positive for the DQ2 gene, but negative for the DQ8 gene.

What do you think? The test result stated that this doesn't eliminate at diagnosis of celiac. Should I go see another GI doctor? I had an endoscopy 2 1/2 years ago that show "mild plasma cell infiltrate of the lamina propia"-this could be the beginning of celiac. Of course with the negative test results-the doctor said it wasn't celiac. So I'm wondering if I should pursue another endoscopy.

Thanks for your input.

Amy, San Jose


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



Celiac.com Sponsor (A8-M):



WGibs Apprentice

I'm assuming you have some digestive or other symptoms that make you suspect celiac. Have you tried the gluten-free diet to see if it helps? You could have non-celiac gluten intolerance or sensitivity. The solution would be the same -- the gluten-free diet. Trying the diet is the easiest, and in some ways most meaningful, diagnostic tool. If you respond positively, then you have a solution to your problems, if not an official label from a doctor.

Just a word of warning: going gluten-free will skew subsequent test results, so you would have to go back on gluten if you really wanted more testing. I know alot of people only want to go gluten-free if they have an official diagnosis. Some docs will make a diagnosis based on positive dietary response, but many will not. For me, the important thing was finding a way to feel better. Going gluten-free did that for me, and it doesn't bother me too much that I don't have an official dx. Every time I have accidentally have gluten, I get major D and get patches of itchy red bumps. If I stay gluten-free, none of that happens. I consider that a virtual diagnosis.

amymm Newbie
I'm assuming you have some digestive or other symptoms that make you suspect celiac. Have you tried the gluten-free diet to see if it helps? You could have non-celiac gluten intolerance or sensitivity. The solution would be the same -- the gluten-free diet. Trying the diet is the easiest, and in some ways most meaningful, diagnostic tool. If you respond positively, then you have a solution to your problems, if not an official label from a doctor.

Just a word of warning: going gluten-free will skew subsequent test results, so you would have to go back on gluten if you really wanted more testing. I know alot of people only want to go gluten-free if they have an official diagnosis. Some docs will make a diagnosis based on positive dietary response, but many will not. For me, the important thing was finding a way to feel better. Going gluten-free did that for me, and it doesn't bother me too much that I don't have an official dx. Every time I have accidentally have gluten, I get major D and get patches of itchy red bumps. If I stay gluten-free, none of that happens. I consider that a virtual diagnosis.

I have symptoms galore, including GI symptoms. Have had them since the birth of my 2nd child in 2000. I know I can gluten-free on my own. I want to be taken seriously-as far as I can expect the medical establishment to do so, before I take matters into my own hands.

I'm also just looking for people who have experience with the gene testing and how seriously doctors take those test results.

Thanks for the feedback.

Amy, San Jose

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. - Rejoicephd posted a topic in Related Issues & Disorders
      0

      Basic metabolic panel results - more flags

    2. - xxnonamexx posted a topic in Related Issues & Disorders
      0

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

    3. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    4. - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    5. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,317
    • Most Online (within 30 mins)
      7,748

    RickT
    Newest Member
    RickT
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      Hey all  Has anyone on here experienced any of the following on their basic metabolic panel results ? This is what mine is currently flagging : - low sodium  - nearly too low potassium - nearly too low chloride - high CO2  - low anion gap  This is now after being nearly gluten-free for over a year (although I admit I make mistakes sometimes and pay dearly for it). My TtG went down to undetectable. I was so sensitive to so many foods I am now avoiding meat dairy and don’t eat a lot of cooked food in general (raw veggies, white rice, avocados and boiled eggs are my usual go-to meal that doesn’t make me sick). But my abdomen still hurts, i have a range of other symptoms too (headaches that last for days before letting up, fatigue, joint pain, bladder pain). Anyway im hoping my urologist (that’s now the latest specialist I’ve seen on account of the bladder pain and cloudy urine after eating certain foods) will help me with this since he ordered this metabolic panel. But I’m bouncing around a lot between specialists and still not sure what’s wrong. Also went back to the GI doctor and she thought maybe the celiac is just not healed or I have something else going on in the colon and I should have that looked at too. I’m still anemic too BTW. And I’m taking sooo may vitamins daily. 
    • xxnonamexx
      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang of it and more aware you realize how many places are gluten-free and contamination free practices etc. One thing I have read is how soy is like gluten. How would one know if soy affects you? I have eaten gluten free hershey reeses that say gluten free etc some other snacks say gluten free but contain soy and I dont get sick or soy yogurt no issues. Is there adifference in soys?
    • knitty kitty
      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
×
×
  • 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.