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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.  :(

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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! :)  :)

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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:

http://ezinearticles.com/?Eczema-Can-Cause-Your-Lips-To-Swell&id=550170

http://www.simple-remedies.com/home-remedies/eczema/eczema-on-lips-how-to-get-rid-of.html

 

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!

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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!   :(

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Did you see this?

http://allergicliving.com/2015/07/08/joint-pain-helps-researchers-catch-celiac-disease-in-kids/

 

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:

 

 

 

 

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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???

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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???

http://s296.photobuc...te1010/library/

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:

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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. 

http://pediatrics.aappublications.org/content/early/2014/01/07/peds.2012-3765.full.pdf

Interesting stuff!

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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.  :(

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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!

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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.?

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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:

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