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

Questionable Lab Results, Lots Of Symptoms

GlutenGrinch

Recommended Posts

GlutenGrinch Newbie
GlutenGrinch
Posted

Hi all!

I'm new to forum, though I've been reading for a while.... I'm wondering how you all might interpret my blood results and symptoms...

I have been dragging since forever, beginning in high school (15 years ago!) and even more so since having kids (now 7 and 9). As a young child, I was extremely small, sickly & anemic. I didn't finally grow until 6th or 7th grade I think. I always had a really hard time gaining any weight despite eating everything under the sun! I was doing OK just before having kids; working FT, at a decent weight, happy and active. After kids, especially the 2nd, I just hit rock bottom. I was severely depressed, I felt like I was under two elephants, I had NO energy no matter how much I slept & my weight crept up & up, so now I'm 30 lbs. more than before I had kids. After my 2nd, I was diagnosed with Ulcerative Colitis, which seemed fairly under control for a while, but now continually flares up. My periods have become weird with lots of in between spotting on top of already long heavy bleeding. I have been bouncing between primary doc's, gastroenterologists & my trusty naturopath looking for answers...

Four years ago, post UC dx, with lots of fatigue, bloodwork showed:

EMA: NEGATIVE

Anti-Gliadin AB IgG: 23 EU (NEG) [N=<25 EU]

Anti-Gliadin Ab IgA: 11 EU (NEG) [N=<25 EU]

Low WBC

Low RBC

High MCH

High Vit B12

Low Ferritin

About six months later, more bloodwork showed:

TPO Ab (thyroid peroxidase): 10 IU/mL (HIGH)

TG Ab (thyroglobulin): <2 IU/mL (N)

Positive Streptozyme (AbN)

Rheumatoid Factor: 14 IU/mL (borderline High)

Last year, my cholesterol, LDL's and AST were all high!

This year, bloodwork shows:

Iron: 103 mcg/dL (N)

TIBC: 469 mcg/dL (HIGH)

Ferritin: 6 ng/mL (LOW)

TSH: 1.21 mIU/mL (N)

FT4: 1.1 ng/dL (N)

FT3: 285 pg/dL (N)

TPO Ab: 94 IU/mL (HIGH-climbing)

TG Ab: 37 IU/ml (HIGH-climbing)

Prometheus:

"Negative for Celiac" per Dr. (didn't get actual results yet)

POSITIVE for HDQ2 & HDQ8

So.... No one wants to diagnose me as celiac, especially the gastro who of course poo-pooed me (no pun intended :P )! The naturopath thinks I should be gluten-free given the UC and

the thyroid antibodies. I was gluten-free for about 3 months, with some improvement UC wise and energy wise, but NOT completely. The gastro now says maybe the gluten-free diet would be OK to try given the genetics.... No one has yet decided to do anything about the thyroid issues, but I finally have an appt. with an endocrinologist who was willing to see me without a dr. referral in a month.

Other family history...

My 1st daughter has lots of mouth sores & chronic split/chapped lips,lots of earwax...

My 2nd daughter was extremely colicky as an infant (completely breastfed), then had lots of GI issues, prone to skin reactions...

My father has severe ataxia which is supposedly due to disc issues, but now I wonder???

Lots of depression in our family.

Brother with psoriasis.

Cousin's son has lots of GI issues and food intolerances, lots of testing but not formally dx'd yet...

Autism in a two distant cousins...

Carpal tunnel & Raynaud's (in me also)...

Migraines in my mom & sister...

Fibromyalgia in my aunt...

ADHD behavior in nephew...

So quite a bit to chew on here! So I'm about ready to go gluten-free again! But I'm wondering about testing my daughters through Enterolab... I'm very open to the idea of Non-celiac Gluten sensitivity, but I worry about the strictness of a GFD for kids without a full diagnosis. It's easy to make the decision for myself, but it is so hard to not feel like I'm maybe exposing my kids to "quackery".... I hope you parents out there understand what I mean. I don't really thinks it's quackery but plenty of people do.... And it's hard without published, peer-reviewed evidence for stool testing. AAGGH! So, I really look forward to some feed back from anybody with more knowledge or experience with this battle!

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

Celiac.com Sponsor (A8-M):


fedora Enthusiast
fedora
Posted

You have both celiac genes and improved on the diet. I would get the promethesus lab results. I would go on the gluten free diet. Stick with it for longer than 3 months.

For you kids, My daughter has no GI problems,but also has terrible mouth sores. Three kinds. She also stopped growing. Based on me saying I was gluten intolerant( I am not diagnosed) and her symptoms they tested her. But they have to if you insist. My daughter wanted to be tested (she's 7). The PA said her one mouth sore is connected to celiac.

I went through enterolab because I went gluten free first- I didn't know about all the various tests then. I KNOW I am gluten intolerant. It just confirmed it. I don't need to know if I have Celiac, but that is just me.

I think of it like this. If you get drunk and feel terrible the next day, everytime you get drunk, do you need a dr to tell you it is from the alcohol? what if they told you it wasn't from the alcohol?

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. marlene333
      - marlene333 replied to Grace Good's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Bee balm lipbalm not gluten free

      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    2. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      jmartes, Thank you for sharing more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is...
    3. Scott Adams
      - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    4. catsrlife
      - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady...
    5. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,263
    • Most Online (within 30 mins)
      7,748
    Elyn Joy
    Newest Member
    Elyn Joy
    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

    • marlene333
      Bee balm lipbalm not gluten free

      By marlene333 · Posted

      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    • Mari
      Related issues

      By Mari · Posted

      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      Patiently Waiting to See Results

      By catsrlife · Posted

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
×
×
  • 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.