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
Tiredsean
Posted

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
shadowicewolf
Posted

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
nvsmom
Posted

'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.

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. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    2. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    4. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    5. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748
    Peta Dunn
    Newest Member
    Peta Dunn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
×
×
  • 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.