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

Doctor Only Ran One Test?

targetsgirl

Recommended Posts

targetsgirl Newbie
targetsgirl
Posted

Hello, I am new here.  I have been "lurking" for about a week, as I waited for my blood test results.  They are in today.  I can view test results online.  From what I understand from my incessant googling and lurking on this site, a full panel should be ordered to diagnose celiac disease.  I see that my doctor only ordered one test.  It is the TTG antibody, IGG.  My result was 1.  I guess this is good, since no one really wants celiac, but I'm afraid to trust the diagnosis if more tests should have been ordered.  Can anyone tell me if I need to press for more testing or if this can send my on my merry bread eating way?

 

A bit of background.  I had the testing done because I have a strong family history of celiac.  Paternal grandmother, two paternal uncles, and a few cousins have been recently diagnosed.  I have been suffering with a lot of hormonal imbalances, frequent periods, tingling hands, anxiety, consitipation/diarrhea, gas and bloating for years. 

 

Thanks in advance for any advice!

 

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Hello, I am new here.  I have been "lurking" for about a week, as I waited for my blood test results.  They are in today.  I can view test results online.  From what I understand from my incessant googling and lurking on this site, a full panel should be ordered to diagnose celiac disease.  I see that my doctor only ordered one test.  It is the TTG antibody, IGG.  My result was 1.  I guess this is good, since no one really wants celiac, but I'm afraid to trust the diagnosis if more tests should have been ordered.  Can anyone tell me if I need to press for more testing or if this can send my on my merry bread eating way?

 

A bit of background.  I had the testing done because I have a strong family history of celiac.  Paternal grandmother, two paternal uncles, and a few cousins have been recently diagnosed.  I have been suffering with a lot of hormonal imbalances, frequent periods, tingling hands, anxiety, consitipation/diarrhea, gas and bloating for years. 

 

Thanks in advance for any advice!

 

With familial history alone, you should have a complete celiac antibody panel.  Add symptoms and yes - you should absolutely have a complete panel.  If all those are negative, removing ALL gluten for at least three months (six is better) to monitor symptoms would be the next step.

 

That your doctor ordered only a tTG-IgG is strange as it is quite common for docs to order a single tTG-IgA for screening -- which is not sufficient either...but is common.

 

Here are the rest of the tests you need:

 

Total Serum IgA

tTG-IgA

EMA-IgA

DGP-IgA

DGP-IgG

 

and if they haven't been run recently:

 

CBC, CMP and nutrients -- B12, D and Iron (minimally) -- my celiac doc adds more Bs, K and other minerals to the list.

 

Good Luck and do give the diet a strict trial once ALL of your testing is complete :)

moosemalibu Collaborator
moosemalibu
Posted

I second what Lisa wrote. Get the full panel done and then trial the diet if those are inconclusive.

targetsgirl Newbie
targetsgirl
Posted
  • Author

Thanks guys.  My gut (no pun intended :P) was telling me the same thing.  I kind of have a love/hate relationship with this doc anyway.  I have had problems anytime I initiate testing (as I did for celiac) or when I ask for more conclusive testing (as I have done for hormones and thyroid) in the past.  I know my body, and something is not right.  Would you recommend a specialist, or just find a new GP?  I live in a very rural area, and my options may be limited...

1desperateladysaved Proficient
1desperateladysaved
Posted

Were you eating gluten when the blood was drawn?  Sometimes they have taken more blood than necessary, so that you could request the rest of the panel without drawing more blood.  If you are not eating gluten, the test would be false negative.

 

I hope you get definitive results soon.  You do have some symptoms and family history.

 

If and when you are all done with all the tests.  It would be good to try a gluten free diet and record the changes in your symptoms.

 

D

targetsgirl Newbie
targetsgirl
Posted
  • Author

I had been eating a gluten filled diet for about two weeks when the blood was drawn.  Before that, I had been on a "limited" gluten diet for about a year.  I avoided it as much as I could, due to gastro problems and feeling lethargic when running(I'm a long distance runner),  but I did splurge maybe once or twice a week on pizza or bread for a sandwich.   My doc said that should be enough gluten to run the test.  She ran some other blood tests while I was there and found some hormonal problems, elevated TSH (but not enough to treat?) and iron deficiency.  I don't think she tested any other nutrients. 

 

I'm really beginning to see why so many people are undiagnosed!

cyclinglady Grand Master
cyclinglady
Posted

What was the TSH value. The range is broad and it is best to be between a 1 and a 3, with closer to 1 being best. Your other thyroid values? Were you tested for antibodies? Anemia (low ferrtin) and higher range TSH levels are always the culprits when my running becomes sluggish.

Mt celiac disease blood tests indicated a mild positive, but my intestinal damage via biopsy showed moderate to severe damage. You might not have been eating enough gluten.

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Eating gluten once per week or less for nearly a year would require a full gluten challenge of twelve weeks of daily gluten (one slice of glutenous bread is enough).  Two weeks would not be long enough to assure accurate blood results.

targetsgirl Newbie
targetsgirl
Posted
  • Author

My TSH was 3.5.  Free T4 was .99.  She didn't check any others, despite my request.  Ferritin was 10.  I have a history of iron deficiency anemia, so that wasn't a surprise.  She also tested some hormone levels, but those results aren't all in.  Prolactin was quite low, so I'm guessing estrogen will be high...  A cousin recommended her doctor to me, so I will  call and try to get in with someone who is a little more thorough than current doc.

 

Thanks for the advice.  Folks on here have already asked more questions than my doctor did.

GottaSki Mentor
GottaSki
Posted

Thanks for the advice.  Folks on here have already asked more questions than my doctor did.

 

Sad...but not uncommon  :(

 

Good luck...let us know if we can help with the next doc :)

cyclinglady Grand Master
cyclinglady
Posted

Anemia/low ferritin was my only symptom. I went in for a routine colonoscopy and the GI suggested celiac disease. I was shocked! Had all that intestinal damage. Your ferritin is way too low! There is a reason for that iron deficiency and it is not always your period. Good luck and welcome!

cmc811 Apprentice
cmc811
Posted

Not to hijack original poster's thread, but what should ferritin be? Mine was labeled as "normal" at 17.8 with a standard range of 12.0-306.0

Should it be closer to mid-range/upper range? Where does transferrin fit in? Mine was actually above the normal range. I've tried googling and just confused myself more and unfortunately my hematologist wasn't much help.

frieze Community Regular
frieze
Posted

an elevated transferrin may indicate an iron def. anemia....

cmc811 Apprentice
cmc811
Posted

an elevated transferrin may indicate an iron def. anemia....

That's what I thought but hematologist said my anemia wasn't iron def.

 

High Transferrin

Very low end of normal ferritin

low hemoglobin

low hematocrit

low red blood cell count

Iron binding capacity 2  points from being high

 

It was my understanding that was all typical for iron def but maybe because my actual iron serum was normal, that is what he was going off of?

frieze Community Regular
frieze
Posted

did the doc actually say anemia? if so, what kind did he classify it as?  don't forget, low magnesium can produce an anemia as well.

cmc811 Apprentice
cmc811
Posted

I got the "unspecified anemia" diagnosis. My PCP referred me to the hematologist to have it further explored but he never figured it out either. He wanted me to keep coming back every 3 months but after the 3rd visit of him saying the exact same things and not reaching any further conclusions I quit going.

 

So, yes I have officially been diagnosed with anemia but I take that with a grain of salt since it can't be pinpointed. Maybe my numbers just naturally run a little outside the ranges, but that is normal for me?

 

Interesting about magnesium.....I can't find in any of my lab reports where magnesium was even checked.

cyclinglady Grand Master
cyclinglady
Posted

I am not an expert in anemia, but my body was able to use iron, but had a hard time storing it due to the celiac disease. I guess they look at hemoglobin levels below the range. My hemoglobin level has always been slightly below the normal range due to a genetic anemia called Thalassemia (tiny red blood cells, out of range MCV). Luckily, my body has compensated for it.

So I had two anemias (still have the one) but because of heavy periods, the doc would prescribe iron and my ferritin levels would come up from a 2 to let's say a 22, but my next heavy period would hit and it would drop my ferritin levels down again to a 2 or 3. I could never get ahead until my GI diagnosed the celiac disease.

I am now through menopause and am no longer iron deficient. I do think a level of 17 is too low, but there is danger of being too high. Heavy periods and being an athlete can suck up a lot of iron.

cmc811 Apprentice
cmc811
Posted

My hemoglobin is always low, as is my hematocrit and rbc. My MCV is slightly high, but B12 and folate are fine. I did notice my b12 is lower with each check though and is now pretty close to the low cutoff. I wonder if I'm becoming b12 deficient?

 

Also, in regards to periods, that is certainly not my problem. I have PCOS and go months between periods if I'm not on bc pills to regulate my cycles. Many of my "anemia" investigations took place during a time when I hadn't started the pill and hadn't had a period in 2-3 months.

 

Thanks for all your info! It's so frustrating because I have many lab values just slightly out of range, but since they don't seem to be getting worse the doctors just shrug and move on. Unfortunately I don't feel well and no one can figure out why :( And with labs that are close to normal no one seems to think the abnormal values have anything to do with my symptoms.

cyclinglady Grand Master
cyclinglady
Posted

Even though I was never vit. B-12 deficient, I took a sublingual version as well as magnesium to combat some neuropathy I was experiencing due to celiac disease or diabetes. It seemed to solve this issue, but who knows? It did not hurt me! It might be with investigating in your case.

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. knitty kitty
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,333
    • Most Online (within 30 mins)
      7,748
    Donna Chem
    Newest Member
    Donna Chem
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

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

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.