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

Another Who Needs Help With Results


Scout8501

Recommended Posts

Scout8501 Newbie

I know many people post on here with their test results, and I've tried looking at theirs to interpret mine. I'm still lost. Last year, I started seeing a new doctor. I have issues with depression, attention deficit, and have had bowel problems since I can remember. I am 24 btw. I described my bowel symptoms with the usual issues, and also that after I eat certain foods my stomach looks like I'm about 4 months pregnant. The doctor decided to run some blood work on me to check all of my levels. The nurse called me back and told me that I needed to take iron supplements, and that my celiac results came back positive. She said that the doctor wanted me to make an appointment with a GI doctor, and recommended one. I ended up moving out of state and never made it to the doctor. I never requested to see my results, and the doctor never brought up the celiac again. Fast forward to a few weeks ago when I went to see her again for some things. I mentioned something about the celiac, and she seemed confused. She flipped through my chart, and very quickly told me that there were antibodies present but that they were low, so I did not have celiac. I was there to get on medication for the depression, and wasn't even thinking about the celiac results. Yesterday, I finally requested a copy of my blood work results and these were the ones that stood out:

Test Name/In Range/Out of Range/Reference Range

FERRITIN (the 10 was circled)

FERRITIN/10/ /10-154 ng/mL

CELIAC DISEASE PANEL

IGA, SERUM/ /76L/81-463 mg/dL (this whole line highlighted)

GLIADIN AB (IGA)/<3/ /<11 U/mL

Reference range:

<11 U/mL Negative

11-17 U/mL Equivocal

>17 U/mL Positive

TISSUE TRANSGLUTAMINASE AB IGA

<3

Reference range:

<5 U/mL Negative

5-8 U/mL Equivocal

>8 U/mL Positive

Tissue Transglutaminase (TIG) - IgA positivity

offer both high specificity and sensitivity for

Celiac Diseas.

For patients with early Celiac Disease with subtle

histopathologic change (Marsch grade I-II), Gliadin

IgA is a sensitive marker.

For patients who are IgA deficient, additional

serological testing would be helpful. TTG-IgG and

HLA testing may help establish a diagnosis.

So, I did some research, and if my IgA serum levels are out of range, does that mean I am IgA defficient? I am not wishing for celiac disease, but when I found out I had it I was relieved to know the cause of my misery. I was relieved that I had control over that misery. I guess I am confused because the nurse told me one thing, but the Doctor told me something else. Should I request another panel? And this time, should I include the IgG? I am hoping someone may be able to help clear things up. I have an appointment to see her next week and she wants to check my iron levels again. I just want to go in there with the right questions.

Thanks for your help!


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



Celiac.com Sponsor (A8-M):



ang1e0251 Contributor

Have you been following a gluten free diet? If so how long and with what results?

Scout8501 Newbie
Have you been following a gluten free diet? If so how long and with what results?

I hate to say it, but I have not. I haven't been on my anti-depressents, and the foods that have been comforting to me contain gluten. I pay the price for it after, that's for sure. There are times I make a conscious effort to stay away from them, but it doesn't last long. I moved away last year, and there were not many foods available that were gluten-free. Since I have moved back to my hometown, I am making an effort to get healthy and take better care of myself. So knowing if my problem is definitely related to celiac disease would help with this.

Scout8501 Newbie

I have not received anymore responses to this question, and I'm hoping that by bringing this topic up once more that someone with an answer can help. I've continued to search for more answers with my appointment coming up in a few days, but have been uncessful in finding anything new. Everything I find confuses me more.

I have noticed that many people on here are not shy about explaining their symptoms, so I am going to give a little more history about my symptoms and situation in hopes that may help. A few years ago, I went to see a GI doctor for my stomach problems. My mother has ulcerative colitis, so I wasn't sure if I was starting to develop that since I was around the age she was diagnosed at. I had been extremely fatigued, which I blamed on the depression. I noticed that if I drank beer, ate breads, pastas, fried foods, pumpernickel pretzels, and lean cuisines (I found this out when I started weight watchers), I would get extremely bloated and constipated. The list of foods that do this to me goes on. And the bloated-ness was to the extreme. I looked pregnant all of the time because my stomach was filled with air. I couldn't pass it, and I would take gas-x all of the time which did nothing for me. Whenever my stomach is bloated, I always pass a lot of mucus. I don't pass stools, mainly mucus and sometimes a tiny bit of blood is mixed in with the mucus. I did find that taking B-12 complex vitamins I had started taking for energy did help with the bloating, but I doubt that has any connection to anything. I also had these "episodes" (for lack of a better word), that would happen out of nowhere. My stomach would start hurting so badly that I thought I needed to call an ambulance. I have been dealing with stomach pain since I was a small child, but this is way beyond just cramping and diahrea. I get really hot all of a sudden, feel nausious, and feel the need to have a bowel movement....but I get nothing. It goes on for what seems like an eternity, but is probably only about 5-10 mins. Then I get chills and sweat runs down me (I don't sweat much, even when working out), and then I'm able to use the bathroom. I use the bathroom for the next 30 mins or so, and then I'm fine. The only thing that stays with me about those episodes is the pain that follows the next couple of days. You know how you throw up a lot, or you cough a lot, and your abdominal muscles are sore? It's NOT that. It's like my intestines, or my insides hurt for a few days following my episodes. In the last couple of years, I've probably only had that happen about 15 times. Anyway, I told the doctor about these episodes, along with the bloating, headaches, constipation, diahrea, and mucus that I have ALL of the time. He ran blood tests and checked my thyroid, celiac, and other things but could not explain the cause. After the blood tests, upper GI (I think that's the test where you drink chalk and they x-ray you?), a colonoscopy, a pelvic sonogram and many doctor's bills later, he diagnosed me with a hiatal hernia, GERD, and IBS. I later found out that the doctor I saw maybe wasn't the best one to see because he doesn't try to dig into finding the cause of your problems. He runs a bunch of tests that makes him money, and when they turn up negative he gives up. After my tests, I would go back to him at his request and have to explain every single symptom over and over again. He seemed to never remember anything I told him, and didn't believe me when I told him about the episodes I was having. He told me that he was sure I was fine. I guess I was hoping for a doctor who would show a little more concern for my health and my issues.

Since then, I still have all of the symptoms listed above. I've also had two miscarriages. They were unplanned pregnancies, and both happened on a birth control that my body had "rejected. But I've read that infertility and celiac are related. I know that my symptoms may very well be IBS, but I would still like to exhaust all of my options for testing for celiac. My GP doctor I see is very nice, and I like her, I just don't feel that she is very knowledgable on thesubject of celiac.

So, I guess this brings me back to my original questions....Did I receive a full celiac panel? Nowhere on the results do I see IgG. And if my IgA Serum was out of range, is the negative TTG an accurate diagnosis and all I need?

Thanks in advance if you are able to provide any suggestions.

ang1e0251 Contributor

I'm not knowledgable enough about tests to answer that for you. You are still eating gluten so just get tested again. Order the correct tests. Then ask for your own copy of the tests and post them here. If you are gluten intolerant and do not have celiac disease, the tests will all be negative but you will still need a gluten-free diet.

Scout8501 Newbie
I'm not knowledgable enough about tests to answer that for you. You are still eating gluten so just get tested again. Order the correct tests. Then ask for your own copy of the tests and post them here. If you are gluten intolerant and do not have celiac disease, the tests will all be negative but you will still need a gluten-free diet.

I plan to order the test again, I just am not sure which to ask for. I've been reading in other forums that after going on a gluten-free diet that their depression and attention deficit have improved tremendously. That alone makes me want to stick to a gluten-free diet.

Thanks so much for your help and answers!

gfb1 Rookie
[snip]

Test Name/In Range/Out of Range/Reference Range

FERRITIN (the 10 was circled)

FERRITIN/10/ /10-154 ng/mL

CELIAC DISEASE PANEL

IGA, SERUM/ /76L/81-463 mg/dL (this whole line highlighted)

GLIADIN AB (IGA)/<3/ /<11 U/mL

Reference range:

<11 U/mL Negative

11-17 U/mL Equivocal

>17 U/mL Positive

you are certainly IgA low, if not clinically deficient. with a value on the 'border' of low i would make sure and follow the suggestion noted below on the laboratory analysis.

For patients who are IgA deficient, additional

serological testing would be helpful. TTG-IgG and

HLA testing may help establish a diagnosis.

ang1e had good advice.

at the risk of banging yet another drum;

take this to your doctor...

Open Original Shared Link

note the 2nd rectangle in the right-most column.

sorry to hear of all your problems, some are perfectly miserable.

hopefully, you can get this diagnosis either confirmed or move on to another solution.

good luck!


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast
For patients with early Celiac Disease with subtle

histopathologic change (Marsch grade I-II), Gliadin

IgA is a sensitive marker.

Sorry for the tangent... do you know what lab (LabCorp, Quest, etc...) did your test? Some labs/doctors are starting to ignore anti-gliaden, which I think is a huge mistake.

I agree that you should ask to be tested again. Try to get an endoscopy! For someone like you who's IgA deficient, that's probably your best chance to get an accurate diagnosis. And no matter what the results are... consider giving the gluten-free diet a try for at least a month. In my case, the diet made such a difference I knew there was no way I could ever go back to eating gluten.

Scout8501 Newbie

Thank you gfb1 and Mother of Jibril for your responses.

gfb1,

I will definitely take that chart to my doctor this week.

Mother of Jibril,

The lab was Quest on Demand. Hopefully I will get more answers after my next blood test. If not, I do think I will consider going gluten-free for a trial period to see how I feel.

Thank you all so much for helping me out! I really appreciate it.

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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    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

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.