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

Help With Test Results

dwhite42

Recommended Posts

nvsmom Community Regular
nvsmom
Posted

Well I have updated my library with some of the blood tests results that are back (still awaiting vit D and blood screen and also thyroid from the GP).  Just really confused it it all.  Especially the Total bilirubin and CRP results (are they normal??!!).  Also not sure what the difference between IgA Immunoglobulins is and IGA serum.  Any clues?  One IgA level does seem to be on the upper end of normal but still within rage.  

 

The total bilirubin and CRP are both normal.  Total bilirubin had a normal range of less than 18 (<18) so the 8 is fine.  The CRP's normal range is below 20 (<20) and the result was an 11 so that looked fine too.

 

The Immunoglobulins are the "Ig" of IgA, IgG, IgM, and IgE. Serum just means blood.  

 

Each immunoglobulin is involved in a different part of the immune system.  Immunoglobulin E (IgE) is responsible for allergic reactions; a low result means there has not been much or any allergens affecting her. IgA is in the mucosal linings of the body like the mouth and intestines.  IgG is a whole body fluids immune system and IgM is in the blood.

 

Celiac disease can involve the igA and IgG immune systems but it won't affect their numbers like an infection would, when it would rise.

 

IgA immunoglobulins and serum IgA are the same thing as far as I know.  It looks like they tested it twice and the results were very similar.  There is no IgA deficiency which is seen in 5% of celiacs.

 

There are no celiac tests in all of those results.  From what I know, those with dh do not test that accurately for celiac disease compared to others.

 

Best wishes to your girl... That looks very very painful.  :(

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

Celiac.com Sponsor (A8-M):


  • Replies 87
  • Created
  • Last Reply
dwhite42 Newbie
dwhite42
Posted
  • Author

So good to hear that she is finally able to see a derm. I hope the appointment gets you some good results. Keeping my fingers crossed on that. 

I also had severe DH like Squirmy and I did have both DH lesions and hives at times. The hives were horribly itchy but they were larger than the DH lesions and didn't get the blisters. They also resolved more quickly and didn't scar. Mine were mostly pressure hives and would show up in a linear fashion like under my waistband, bra bands and where seams from my clothes would put pressure on my skin. 

Thanks very much! :)  :)

dwhite42 Newbie
dwhite42
Posted
  • Author

nvsmom & others are much better @ interpreting bloods than I am so I will let them weigh in on that. Although her "regular" bloods look normal with the exception of monocytes which are white blood cells are a tiny bit low. What that means - I don't know.

I can say that a full celiac panel is not in those reports.

Does she have any dry places on her lips? Or lesions or rash? I did find these links that talk about swelling of the lips with eczema:

Open Original Shared Link

Open Original Shared Link

 

So from what I'm reading the derm is convinced it's eczema & refuses to consider or rule out anything else. If it's dh she will not be able to get it "under control". I really do NOT understand WHY they REFUSE to do a dh biopsy if ONLY to RULE IT OUT.

 

I went back to your first post on here to review & You said :

"We left the doctors with him saying she needed to do a two week gluten free challenge to notice any effects.  Within 24 hours she had gone from 4-6 toilet stops a day to 2.  However she had severe stomach cramp on gluten free.  Could this be because her gut is not used to working efficiently?"

So when she went gluten free, in 2 days her toilet stops went from 4-6 down to 2. That, plus the "failure to thrive" when she was little & the tingling hands & feet & the muscle cramps & spasms. It's ENOUGH to be very suspect of celiac & that means her rash is suspect of dh.

I STILL contend she needs to have a dh biopsy. If it is done & done right & she turns up negative then she is negative and then you will have ruled that out & can look for other answers.

I just feel like this is wasting time while she is suffering (and you are). And I will also say that i think it's quite possible she has more than one thing going on with her skin so more than 1 biopsy should be done.

Thanks for that Squirming.  I totally agree with what you say.  I do feel there is two things going on with the skin.  We are back to the derm on Saturday and will follow her procedures.  It has helped with the oozing and its nice to have something to wash with.  When we go I shall push saying that ultimately my aim is for a biopsy of the skin to rule it out as she has the gut issues also.  We go back to the gastro in two weeks and I feel he will just want to discharge due to the lack of blood evidence so far.  So again I shall have to push about link with gluten and toilet and skin to rule out.   It seems the cards are stacked against us!  I shall also ask nicely how may DH cases she has dealt with and whether she feels it looks similar and again link to the stomach issues.  She has been off gluten for the week and wondering now we have all these supposedly super dooper creams whether to start re-introducing it back in just in case we get lucky and they say they will do further testing.  BIG SIGH!

dwhite42 Newbie
dwhite42
Posted
  • Author

The total bilirubin and CRP are both normal.  Total bilirubin had a normal range of less than 18 (<18) so the 8 is fine.  The CRP's normal range is below 20 (<20) and the result was an 11 so that looked fine too.

 

The Immunoglobulins are the "Ig" of IgA, IgG, IgM, and IgE. Serum just means blood.  

 

Each immunoglobulin is involved in a different part of the immune system.  Immunoglobulin E (IgE) is responsible for allergic reactions; a low result means there has not been much or any allergens affecting her. IgA is in the mucosal linings of the body like the mouth and intestines.  IgG is a whole body fluids immune system and IgM is in the blood.

 

Celiac disease can involve the igA and IgG immune systems but it won't affect their numbers like an infection would, when it would rise.

 

IgA immunoglobulins and serum IgA are the same thing as far as I know.  It looks like they tested it twice and the results were very similar.  There is no IgA deficiency which is seen in 5% of celiacs.

 

There are no celiac tests in all of those results.  From what I know, those with dh do not test that accurately for celiac disease compared to others.

 

Best wishes to your girl... That looks very very painful.   :(

Thank you very much, that was very helpful.  We only have a couple of other tests to come in so am hoping something will come up but it seems unlikely at the moment!   :(

squirmingitch Veteran
squirmingitch
Posted

Did you see this?

Open Original Shared Link

dwhite42 Newbie
dwhite42
Posted
  • Author

Did you see this?

Open Original Shared Link

 

Thats really interesting, I am going to go into printing off mode when I go to the gastro.  I am just so torn as my daughter is not giving me any goods in the blood department!  We had her Vit D levels back today and they seemed ok.  They were:

 

D2  =  <7

D3 = 109

 

Total Vitamin D (D2 & D3) = 109   (25-120)

 

Does anyone know what D2 is for?  I have tried to find out but to no avail.  Even though she is not deficient in total, should D2 be that low?

 

I took my daughter off of gluten for the week when she was so full of spots and swelling lips, she went back on Monday (very light) and had more yesterday and what happened, spasms in the neck this time and back!  Also very quick headaches, which I feel is like the spasms (comes and goes very quick).  Today she was unable to finish a bread roll as it made her feel ill and she has had stomach spasms this afternoon and back pain again.  As much as the test results are saying no, I just cant seem to get it out of my head that there must be at least something going on.  I just need to try and build my case without sounding like a deranged mad woman when I go back to gastro! :wacko:  :wacko:  :wacko:

 

 

 

 

squirmingitch Veteran
squirmingitch
Posted

So I'm looking at the bloods the gastro ordered and it looks like the tests that are not back yet are the gene typing & that's all. So the gastro did not order a current complete celiac blood panel. Can we all scream now?!!!??? And the lady doc ordered the thyroid & B12 which have not come back yet. And the folate as well.

 

As far as I could gather from research is that it isn't really important whether it's D2 or D3 & since her total D is good then that's what matters. Of course I am no expert on D levels. Actually what I was reading said a lot of D supplements in the US are D2 rather than D3 & the newer studies say D3 is better. it does get complicated because they don't just come out & say D2 does this & D3 does that but it sounded to me like they are more or less interchangeable???

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

Celiac.com Sponsor (A8-M):


dwhite42 Newbie
dwhite42
Posted
  • Author

So I'm looking at the bloods the gastro ordered and it looks like the tests that are not back yet are the gene typing & that's all. So the gastro did not order a current complete celiac blood panel. Can we all scream now?!!!??? And the lady doc ordered the thyroid & B12 which have not come back yet. And the folate as well.

 

As far as I could gather from research is that it isn't really important whether it's D2 or D3 & since her total D is good then that's what matters. Of course I am no expert on D levels. Actually what I was reading said a lot of D supplements in the US are D2 rather than D3 & the newer studies say D3 is better. it does get complicated because they don't just come out & say D2 does this & D3 does that but it sounded to me like they are more or less interchangeable???

Open Original Shared Link

Thanks for that.  All very confusing these two types!  B12 and thyroid all are normal, so nothing springing up there.  I have uploaded another test sheet, some of the tests are duplicate but there is a "coeliac screen"  one.  Now my daughter was 0.60 and the range is 0.0-0.69.  Would anybody say that she's nearer the top end, also her Iga was 2.77 (on another one it was 2.67ish) and the range is (0.8-2.8), again could this be that she is working her way to the top, or am I just clutching at straws!   :wacko:  :(  :rolleyes:

squirmingitch Veteran
squirmingitch
Posted

The IgA is the test to see if she's IgA deficient. If she were IgA deficient then it would mean she returns false negatives in the celiac bloods OR that if there are any borderline or near borderline numbers they should be given much greater weight. Some celiacs are IgA deficient but your daughter is not. 

 

I can't really figure out if the tissue transglutaminase is Ttg or not. Nicole is really a whiz at the bloods so I will let her give her opinion on that one. Also, there are certain problems with kids & bloods - again I want Nicole to weigh in on that one. Then we must not forget that if she has dh, 60% of the time the bloods are false negatives. So our problem is; will she be one of the 60% or will she be one of the 40% who test positive? Still, they did not do the complete celiac blood panel. Sigh.

 

Since the derm seems determined not to do a dh biopsy, then the best way to know for sure is to get the gastro to do an endoscopy & take at LEAST 6 biopsies. The small intestine, when split open & laid out would cover a tennis court!!!! That's a great deal of area!! This is why it is recommended they take a minimum of 6 biopsies from different areas. Especially important in dh patients as our damage tends to be "patchier". 

 

Here is another thing I found. Borrowed it from one of Nicole's posts in the kids forum. 

Open Original Shared Link

Interesting stuff!

nvsmom Community Regular
nvsmom
Posted

You had it right.  The tTG is tissue transglutaminase, and I'm guessing the one she had done on her was the tTG IgA because it said they ruled out IgA deficiency for this test.  The normal range was 0.0 - 6.9, and her result was only a 0.60 - pretty low result. Negative for sure.

 

The EMA IgA (or endomysium antibodies) was alos negative.  That one is not a surprise if her TTG IgA was negative.  The two tests are very similar but the EMA IgA tends to detect more advanced (attempted intestinal) damage.  It is really unusual to have a positive EMA IgA when the tTG IgA is negative.  In fact, labs rarely run the EMA igA if the tTG IgA was negative.

 

The EMA IgA is one of those tests that tends to miss celiac disease in young children because it is not always positive early on in the disease.

 

The IgA, which she got 2.7 on, is not a celiac disease test.  It's just a control test to make sure a part of her immune system is functioning at a high enough level so that celiac disease autoantibodies should be detectable.  She looks perfect.

 

Soooo, the doctors skipped the tTG IgG. deaminated gliadin peptides tests (DGP IgA and DGP IgG), and / or the older and less reliable antigliadin antibodies tests (AGA IgA and AGA IgG). :(  The deaminated gliadin peptides tests should be done.  They are the BEST test at detecting celiac disease in small children.  sigh...

 

Can you just see a GP and have the DGP IgA, DGP IgG, and tTG IgG run since the other doctor didn't (for some unfathomable reason).  We have adult members here who were only positive on one test, like one of our moderators who only had a positive DGP IgG.  It happens even when the patient has perfect IgA levels like your daughter... the poor thing.

 

I hope you can get answers soon.  :(

dwhite42 Newbie
dwhite42
Posted
  • Author

You had it right.  The tTG is tissue transglutaminase, and I'm guessing the one she had done on her was the tTG IgA because it said they ruled out IgA deficiency for this test.  The normal range was 0.0 - 6.9, and her result was only a 0.60 - pretty low result. Negative for sure.

 

The EMA IgA (or endomysium antibodies) was alos negative.  That one is not a surprise if her TTG IgA was negative.  The two tests are very similar but the EMA IgA tends to detect more advanced (attempted intestinal) damage.  It is really unusual to have a positive EMA IgA when the tTG IgA is negative.  In fact, labs rarely run the EMA igA if the tTG IgA was negative.

 

The EMA IgA is one of those tests that tends to miss celiac disease in young children because it is not always positive early on in the disease.

 

The IgA, which she got 2.7 on, is not a celiac disease test.  It's just a control test to make sure a part of her immune system is functioning at a high enough level so that celiac disease autoantibodies should be detectable.  She looks perfect.

 

Soooo, the doctors skipped the tTG IgG. deaminated gliadin peptides tests (DGP IgA and DGP IgG), and / or the older and less reliable antigliadin antibodies tests (AGA IgA and AGA IgG). :(  The deaminated gliadin peptides tests should be done.  They are the BEST test at detecting celiac disease in small children.  sigh...

 

Can you just see a GP and have the DGP IgA, DGP IgG, and tTG IgG run since the other doctor didn't (for some unfathomable reason).  We have adult members here who were only positive on one test, like one of our moderators who only had a positive DGP IgG.  It happens even when the patient has perfect IgA levels like your daughter... the poor thing.

 

I hope you can get answers soon.   :(

I cannot understand with all the tests that were ordered also why the tTG IgG. deaminated gliadin peptides tests (DGP IgA and DGP  IgG) wasn't.  I am not sure whether they do them in the UK.  Just wondering if any UK people have had these done?  All they seem to talk about is all the other tests.  I will bring this up when I see him, just trying to gather as much info as possible before I do!

squirmingitch Veteran
squirmingitch
Posted

I'm sure the other tests are done in the UK. I could swear I've read it on here numerous times. When is the gastro appt.?

dwhite42 Newbie
dwhite42
Posted
  • Author

I'm sure the other tests are done in the UK. I could swear I've read it on here numerous times. When is the gastro appt.?

Its on 24th July. I am going to ask about the tests and say that some people have failed all others but them and see what he says.  :rolleyes:

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. Scott Adams
      0

      Celiac Diner Sues Olive Garden After Gluten Mix-Up Leads to Medical Emergency (+Video)

    2. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    3. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    4. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    5. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,030
    • Most Online (within 30 mins)
      7,748
    Virgini Brewsaugh
    Newest Member
    Virgini Brewsaugh
    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
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.