Gather and Post Here Your Medical Tests Results - Discussion Thread

[nanna1]

ANA-titer: 1.160. RR: less than 1.80
ENA-screening: neg. RR: neg
Ds-DNA as: less than 10. RR: 0-35

Did some new blood tests. Most important is that my ANA-titer is too high. I do not know what this means for POIS. But it is for sure that on immunology there is something wrong. Althought also healthy people can have too high ANA-titer.

Thanks for sharing your medical information. All of the autoimmune parameters that I can see are normal. The ANA-titer that you show is normal (1.16 < 1.80). Is there something that I missed? I did add your result to the pattern list.

--4 of us have normal autoimmune panel test (nanna1, quotz, Vandemolen, Muon).

[Vandemolen]

ANA-titer: 1.160. RR: less than 1.80
ENA-screening: neg. RR: neg
Ds-DNA as: less than 10. RR: 0-35

Did some new blood tests. Most important is that my ANA-titer is too high. I do not know what this means for POIS. But it is for sure that on immunology there is something wrong. Althought also healthy people can have too high ANA-titer.

Thanks for sharing your medical information. All of the autoimmune parameters that I can see are normal. The ANA-titer that you show is normal (1.16 < 1.80). Is there something that I missed? I did add your result to the pattern list.

--4 of us have normal autoimmune panel test (nanna1, quotz, Iwillbeatthis, Vandemolen).

No my ANA-titer is too high. It should be less than 1.80. But mine is 1.160. Or better: 1:160 is higher than 1:80. An ANA-titer of 1:160 or higher is considered as a positive test result.

[nanna1]

Please tell me if my math is wrong.
  (1:160 = 1/160 = 0.00625) < (1:80 = 1/80 = 0.0125) (normal)
or if we interpret the result as it is written:
  1.16 < 1.80 (normal)

Both of these interpretations of the data show normal ANA-titer (autoimmunity), even though they mean different things. Am I missing something?
I took the following 7 autoimmune test: anti-nuclear antibody, anti-DNA antibody, anti-SSA antibody, anti-SSB antibody, anti-Sm antibody and anti-RNP antibody and anti-SCL-70 antibody. All of these were negative/normal (see section 3. Autoimmunity blood test:).

[Vandemolen]

Please tell me if my math is wrong.
  (1:160 = 1/160 = 0.00625) < (1:80 = 1/80 = 0.0125) (normal)
or if we interpret the result as it is written:
  1.16 < 1.80 (normal)

Both of these interpretations of the data show normal ANA-titer (autoimmunity), even though they mean different things. Am I missing something?

For the ANA test, 1 part of the serum is diluted into 40 parts of diluent (called a “1:40” titre). This diluted sample is tested for the presence of ANA antibodies. If the test is positive, a new sample is made at half the strength (1:80) and tested for the presence of ANA. The test is repeated every time it is positive by diluting the sample to 1:160, 1:320, 1:640, 1:1280, and finally 1:2560.

The lowest dilution is 1:2560. When antibodies are present at the lowest dilution, this indicates that there is a very high number of antibodies in the blood. In other words, the body has mounted a substantial immune response against nuclear proteins.

https://rheuminfo.com/common-tests/anti-nuclear-antibody-ana-test/

[nanna1]

https://rheuminfo.com/common-tests/anti-nuclear-antibody-ana-test/

I initially did not understand that 1.80 in your test really means 1:80. Thanks Vandemolen for the clarification. But now I am even more confused because the site you quote states the following:

"If the ANA titre is low (e.g. 1:40, 1:80 or even 1:160), there is often no autoimmune disease"

https://rheuminfo.com/common-tests/anti-nuclear-antibody-ana-test/

So is the site you quote correct, that you probably do not have an autoimmune disease?

[Vandemolen]

https://rheuminfo.com/common-tests/anti-nuclear-antibody-ana-test/

I initially did not understand that 1.80 in your test really means 1:80. Thanks Vandemolen for the clarification. But now I am even more confused because the site you quote states the following:

"If the ANA titre is low (e.g. 1:40, 1:80 or even 1:160), there is often no autoimmune disease"

https://rheuminfo.com/common-tests/anti-nuclear-antibody-ana-test/

So is the site you quote correct, that you probably do not have an autoimmune disease?

The lab where I did the test says 1:80 is ok. But 1:160 is not. They marked it with a H for too high. When you google some say even 1:80 is not ok. They consider 1:40 to be an ok result. But 1:160 is not extremely high. So I am curious what my POIS doctor will say about it.

[Hopeoneday]

Hi Nanna1 , i am wery glad to see that you did heard my words and start making
comon patern tread "software", i did giwe all from my self to collect traces of usefull data
all ower the...

My sugestion is that you make separate tread with this only.(and update it)
I think that this is wery imoprtant, evan now we can se that some poisers hawe allmoust
the same lab test resullts.

I inwate here all pois mebers to collect all traces of usefull data from poisers,
i mean when you find some on resarching, plese post them on medicall test results tread.
(or your own personall)

I am convinced that we will find in this whey in future what trigering illnes in us,
would this be one thing to make us ill , or 4-5 things togedher and because of that
imunity is triggered, wi will knew it in future.
Thanks Nana.

[Muon]

So I am curious what my POIS doctor will say about it.

Ask him for an IgG4 test. A Normal IgG level tells us nothing about IgG4 since IgG4 covers only a few percentage of the total sum of IgG subclasses. The reason for testing this is that people who have done immunization therapy might produce IgG4 specific antibodies which raises the total level of IgG4.

[nanna1]

Thanks Hopeoneday for posting a lot of data from other POISers. A scientist is only as good as his/her data set. We will have to think about how to organize the patterns.

[Muon]

Nanna posted a case report here. The patient seems to have a fatty liver. It's unclear to me whether this patient uses alcohol. Changes in the microbiome and choline deficiency play a role in fatty livers.

''Links between dysbiosis of the gut microbiota and liver diseases, in particular NAFLD, have been documented. Patients with NASH can have increased levels of blood ethanol. Patients with a more aggressive NAFLD were found to have a choline depletion linked to an increased choline metabolism.''
https://en.wikipedia.org/wiki/Non-alcoholic_fatty_liver_disease
https://en.wikipedia.org/wiki/Fatty_liver_disease
Many causes are possible and many of these are being discussed on this forum.

Association Between Composition of the Human Gastrointestinal Microbiome and Development of Fatty Liver With Choline Deficiency
There are more references on the wiki page.

What is noteworthy in this POIS case is life-long atopy: ''What should be considered in this patient is his life-long atopy...''
Family members of mine are sensitive to things like food, pollen, latex etc.
''Atopy is a predisposition toward developing certain allergic hypersensitivity'' and ''Atopy may appear associated with an undiagnosed non-celiac gluten sensitivity''
https://en.wikipedia.org/wiki/Atopy

[fernab]

And again, according to Dr. Theoharis Theoharides, non-celiac gluten enteropathy, as well as allergies, and atopy may be linked to Mast Cells....

This text below is from Theoharis Theoharides:

MCs are best known for their role
in immediate IgE-mediated, allergic
responses in anaphylaxis, food allergy,
venom allergy, and asthma. Recent
reports have also implicated MCs in
nonallergic disorders, including head-
ache syndromes, irritable bowel syn-
drome, non-celiac gluten enteropathy,
osteoporosis, autoimmune syndromes,
neuropsychiatric disorders, and intersti-
tial cystitis [Theoharides et al., 2015].

[Muon]

Indeed Fernab, Dr.Theoharides considers atopy a subset of mast cell activation disorders where MCAD is a much broader term. And people should distinguish allergic mast cell activation from non-allergic mast cell activation.

[fernab]

Yes Muon, you are right.

In my case as poiser, I have been diagnosed to have non-celiac gluten enteropathy. I have been also diagnosed of having dermatography. A very striking indication to take into account for the diagnosis of some mast cell desorder.

But despite everything I am fully aware that the diagnosis is necessary to confirm POIS may have any relationship with any of the various mast cell disorders. Will try to follow this posibility and update you all.

[Muon]

In my case as poiser, I have been diagnosed to have non-celiac gluten enteropathy.

How did they establish that diagnosis?

[fernab]

1.- Discarded celiac disease by duodenal biopsy in 2015 and 2018.

2.- antibodies related with celiac disease:
   anti tTG + anti DPG (IgA+IgG):
       ? september 2015: 39.1 (positive)
       ? march 2016: 128 (positive)
       ? march 2018: 234 (positive)
       ? october 2018:  >300 (above 300, positive)

3.- anti DPG IgA 12 U/ml (positive in march 2018, previously negative).

4.- Genetic analysis of celiac disease:
     Antigen histocompatibility HLA DQ2 negative:
      DQ2 Negative
    Not detected alleles conferring risk of celiac disease
   HLA-DQA1*0501: Negative
   HLA-DQA1*0201: Negative

   HLA-DQB1*0201: Negative
   HLA-DQB1*0202: Negative

     Antigen histocompatibility HLA DQ8 negative:
      DQ8 Negative
   Not detected alleles conferring risk of celiac disease
   HLA-DQA1*03.   : Negative
   HLA-DQB1*0302: Negative

In summary, genetically I cannot be celiac. Confirmed studying biopsies in 2015 and recently in 2018. (They also filmed all the internal gut with a cam (endoscopic capsule). And after studying biopsies they concluded everything was normal. intestinal villi are completely normal. Without any type of microscopic atrophy according to study of pathological anatomy. Duodenal mucosa without morphological alterations. They did an immunohistochemical study of the biopsy for intraepithelial lymphocyte count. With a result of 15 lymphocytes x 100 enterocytes (range within normality).

After 3 years of testings with no clear celiac results they asked me to do a diet without gluten. About 15 days after starting the gluten-free diet. The diarrheas that I was having disappeared.
An immunologist after showing him all these results told me. You are not celiac, but you have developed a sensitivity to gluten. Recently a very experienced rehumatologist with more than 30 years of experience in gluten related pathologies told me exatly the same: I am not celiac but gluten sensitive according to those results.

[fernab]

As scheduled, last thursday (7th February) they took a blood sample to do the genetic test.

Hopefully next 8th march will have the result. Will keep you upated.

[Nas]

Had anyone done an MRI?

[fernab]

Yes Nas, I did many. Brain and the whole spine. The only remarkable thing they found were some hemangiomas close to some  vertebrae bones.

I also did a pelvic MRI some days after I rode on sled. Since after that I began to manifest the trigger to pressure (at this time only on the perineal and testicles area). And therefore I started not being able to sit down. This MRI, showed some signs of post prostatic inflammation at some points.

By the way Nas, when I was searching videos on Youtube about MCAS patients having also a pressure trigger when sitting or laying down, I found a girl with MCAS a girl whose trigger was smoking. Something happens to you when you smoke, too?

[Nas]

Yes Nas, I did many. Brain and the whole spine. The only remarkable thing they found were some hemangiomas close to some  vertebrae bones.

I also did a pelvic MRI some days after I rode on sled. Since after that I began to manifest the trigger to pressure (at this time only on the perineal and testicles area). And therefore I started not being able to sit down. This MRI, showed some signs of post prostatic inflammation at some points.

By the way Nas, when I was searching videos on Youtube about MCAS patients having also a pressure trigger when sitting or laying down, I found a girl with MCAS a girl whose trigger was smoking. Something happens to you when you smoke, too?

So the brain MRI didn't show any enlargement, shrinking or swelling? This even more leads me to believe that POIS cognitive symptoms are not brain inflammation.
And yes, smoking cigarettes makes me POIS, but at this point I don't think what I have is MCAS or anything related to Mast Cells, since I've tried so many Mast Cells treatments but without any success.

[Vandemolen]

Yes Nas, I did many. Brain and the whole spine. The only remarkable thing they found were some hemangiomas close to some  vertebrae bones.

I also did a pelvic MRI some days after I rode on sled. Since after that I began to manifest the trigger to pressure (at this time only on the perineal and testicles area). And therefore I started not being able to sit down. This MRI, showed some signs of post prostatic inflammation at some points.

By the way Nas, when I was searching videos on Youtube about MCAS patients having also a pressure trigger when sitting or laying down, I found a girl with MCAS a girl whose trigger was smoking. Something happens to you when you smoke, too?

I also had an MRI for the brains and the pelvic area, also the kidney’s. Have you ever had a dry needle treatment for your pelvic area? A therapist felt that the trigger point above my bladder (the pubic hair area) was very painfull. I want to go to a dry needle fysiotherapist to treat those trigger points.