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

Got Results From Last Exam Now Worried&confused!


Tiredsean

Recommended Posts

Tiredsean Explorer

This will be a long post but I really need opinions.Below are my celiac results and thyroid results plus vitamin deficiency reports plus doctors comments below.Just so everyone knows I scheduled today with my doc otherwise everything was considered normal to them by phone??? For celiac :anti-gliadine iga. 0-19.9. Result 2.6. Anti-gliadine igg . 0-19.9 result 2. Anti- transglutaminase. Iga. 0-3.9. Result 1.23 For thyroid: tsh:1.12. Free t4: 20.3. Range 12-22 Freet3 coming soon took it today was left out last time. Vitamin stats: vitamin D 148 range 79.9-250 (I supplement 4000iu daily) . B-12 range 179-660 result 874 I supplement 1000mcg was told to back off supplements, Iron: range 11-28 I'm 17 folic acid: range 7-39.7 I'm 32.8 Ferratine : 30-400 I'm 114.9 CBC count:all good Urine test:all good Cortisol: 64-536 range I'm 482.3 My sodium and potassium chlorur and glucose good . The glucose was actually 3.3-6 range I'm 6.2 .He said at that number they don't bother with it. Ohh and calcium range 2.13-2.6 I'm 2.47 and magnesium range .65-1.05 I'm .89 and I supplement both calcium and mag . Here is where I'm worried but doc isn't and wouldn't of bothered with it if I hadn't gone to see him today. Two readings for liver ALT. 5-41 I'm 55 and Ggt range 08-61 I'm 64 and lastly cholesterol total range 3.15-5.18 I'm 5.38 and LDL cholesterol in the breakdown range 1-2.59 I'm 3.77. HDL cholesterol I'm in range. The doc says people like alcoholics or over weight people have readings of double or triple the liver readings I have so that's why he didnt bother. To appease me he ran another slew of just liver tests and even said because I worry so much at 145$ an echo scan of my liver/abdominal area just to settle my mind.He also told me to stay off gluten because 1: when we tested the first time it had been 3 weeks I was off gluten and I was off previously before my spaghetti dinner episode. 2: it can't be ruled out and my second big body shut down of fatgue,muscle pain/tension/weakness/shortness of breath and palpatations was again another spagehtti dinner last Friday .He said it can be complete coincidence or actually gluten causing worse and worse symptoms each time I eat it. He also said it can take way longer that a week to feel better after eating gluten and way longer that that to heal the collateral damage ??? I'm just scared now that I have liver cancer and they will find something on the echo scan and that will be my end.Ive been sick too long (march 2011) with off and on symptoms and its taken a huge toll on my mental stability!! Also high colesterol? On a fruit/meat/veggie and potatoe chip diet? Hell I've lost 25 pounds!! Apart from two major glutening dinners I've been pretty hardcore gluten free


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

If you've been gluten free before testing started, then it would throw them off. Very off.

At any rate, unless you were to go back on the gluten, any further tests for it wouldn't be very conclusive. There is a genetic test you can have done to see if there is a chance that you could develop it.

Even if you did go back on it, there is no say whether or not you have celiac. It could just as easily be NCGI (non-celiac gluten intolerence) which mimics many of the same symptoms that celiac has (outside of actual damage).

nvsmom Community Regular

'Wolf is right about the NCGI (in my opinion). It is much much more common that celiac and sufferer's don't have the intestinal damage so unlike those with celiac, they often have normal vitamin and mineral levels (there are exceptions - I'm one in fact) and they don't have the low cholesterol levels that many celiacs have.

Most of your tests look really good, so chances are you don't have celiac or thyroiditis. celiac disease does have a 25% false negative blood test rate (approximately) so there is a chance you are one of the minority.

Either way, it's probably a good thing to go gluten-free for at least a few months, a half year is better.

BTW, many around here have astonishing stories of "unexplained" liver function recovery after going gluten-free. Try not to jump to the worst conclusion. Chances are it's not cancer, and your diet (gluten) has affected your liver.

... And make sure those potato chips are gluten-free. ;) Best wishes. Let us know how it goes.

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. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      10

      Insomnia help

    2. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

    3. - pothosqueen posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

    4. - hjayne19 replied to hjayne19's topic in Traveling with Celiac Disease
      4

      Mallorca Guide

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

    • Total Members
      132,990
    • Most Online (within 30 mins)
      7,748

    pothosqueen
    Newest Member
    pothosqueen
    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

    • knitty kitty
      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
    • trents
      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
    • pothosqueen
      Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?
    • hjayne19
      This is great thank you very much @Scott Adams
    • hjayne19
      Thank you so much @knitty kitty I really appreciate this information. I’m so thankful to have found this forum and this community. After reading the book “at last a life” that @cristiana recommended, I have been experiencing a lot more anxiety than I thought I was. This book really helped me put things into perspective.    In terms of the B complex, do you have recommendations for amounts or any B complex should do? I am in Canada if that makes any difference for brands.    Also those articles are very helpful as well, thank you. I know 3 months is still early in the healing period but these tips are very helpful to hopefully feel physically better sooner than later! 
×
×
  • 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.