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Hi Everyone,
My original question was this. A lady in my group has the following blood
work and I need help with it.
Tissue Transglutaminase AB is 1.2
Endomysial Antibody is Negative
Gliadin IgA is 1
Gliadin IgG is 1
IgA (Immunoglobulin A) is 152
Is the last one a positive reading?
This person was previously diagnosed with MS and told she is probably
celiac. She remembered years ago being diagnosed with DH, but nothing was ever
done about it.
She was tested for celiac before we realized she had the DH diagnosis.
The results of the tests are above, which look pretty much normal. The
question was whether you could test negative for celiac, even tho you were positive
for DH. No diet had been undertaken.
One last point....She almost backed off from doing the diet when she saw the
celiac panel was negative. I told her she couldn't do that. So she did a
very strict gluten/casein free diet. Within about FOUR days of starting, all
her symptoms began subsiding and she said she hadn't felt that good in
years! Life is Good! Too many people want to back away and I am so glad she
didn't. Below are the answers I received from everyone. I was asked to
summarize, so here you go...
I just wanted to share that I have just been diagnosed with B12 deficiency.
The symptoms and effect on the nerves is identical to MS. Your friend will
want to get tested to rule it out. Unfortunately, the serum B12 test only has a
48 percent sensitivity (it misses 52 percent of people with serious B12
deficiency). Tests that should be taken along side it are MMA spot urine test,
and a test for homocystein levels. I was very deficient even though I was
taking oral supplements. I am just not able to absorb it by mouth. Now I take
shots and B12 sublingual (under the tongue) supplements.
Positive IGA is good. Otherwise, the other tests are worthless.
I believe Dr. Fine has said that any positive TTg is proof of celiac
disease. That's a really low number, though.
Yes, I've seen several people on here state that they have DH with negative
sera tests. She should definitely be on a gluten-free diet.
A positive DH diagnosis is a 100 percent positive Celiac disease! No further
testing is needed. this can be confirmed in any and all current literature.
Either by dr. Green, his books, the dvd, you name it. A positive dh means
that you have celiac, without question.
The blood test doesn't matter a bit. And no one can read it from afar
because each lab has different reference numbers. I would throw that away, abd
shame on the doc who did not know that dh IS celiac. This poor woman! The docs
frustrate me terribly. The blood tests are simply a screan. They are constantly
false negative due to the fact that it takes very high amounts of gluten and
damage for them to come back positive. Remember they are only a screen. A
positive blood test, is for sure positive, but negative requires a next step.
Years ago they believed dh was not affecting the intestine, however it has
been a few years now that they know differently. They used to prescribe dapzone
and send them on their way. But these people suffer the same repricussions as
all celiacs. I am sorry to hear she is suffering from other autoimmunes as a
result. She must be 100 percent gf immediately and forever. To confirm for
yourself, you can find on a google search of dr. Green U of columbia celiac
and search the dh section. Celiac. Com will also confirm. All of the reputable
research centers will confirm
My understanding has always been that if you have DH, you have celiac 100 %
of the time.
If a person has DH, they are considered to have "celiac", though
they usually do not have a positive biopsy. The blood work
will be positive if there is a certain type of gut reaction to
gluten, but she may not have that. Also, is she on a GF diet?
If she is, then of COURSE he blood work would be negative.
Even a low gluten diet can make the blood work get better.
Anyway, the "meaning" of IgA in the blood is basically that
there is leaky gut. If there is any gliadin IgA in the blood,
then she does react to gluten. She may or may not have
enough gut damage to be "celiac" by biopsy. The blood
tests are basically not a very reliable indicator of whether
someone will get better going GF: but if she has DH
and MS, and gets better on a GF diet, then that's a
very good test! She may also need to go casein-free,
or at least try it to see if it helps (I have DH too, and the
casein affects it). Vitamin D is important too for MS, I think.
We had a difficult experience with my son's IGA test results. It is
important to understand the specifics of how that particular lab presents the
results. Our pediatrician read the results and said that my son had celiac
disease. He redid the test to make sure and again felt that my son had celiac
disease. When we went to the gastro, she said no he did not but rather the way
that particular lab presented the results was the inverse of what most labs
did.
My husband's mother was an MS patient for 15 or 18 yrs when her
granddaughter (my daughter) was diagnosed celiac. We had his mother
tested and her scores were high on all the celiac tests. She was having
problems swallowing and had been put on a feeding tube, was in bed all
the time at that point. Once she got off gluten she improved to where
she could take thickened liquids, was able to sit up again in her
electric wheel chair, and even pick up the phone. She had previous had
a terrible experience in the hospital with pneumonia so had signed a
consent to not treat if she got pneumonia again, so she died of
pneumonia not long after this. I have always wondered how much more she
would have improved off gluten but the nursing home honored her
affidavit and she died of pneumonia there.
Dr. Green's celiac center at Columbia made tapes the first two years
they had patient ed day for celiac and there was a neurologist there who
said they have even had people come out of what seemed like a coma when
they were taken off gluten. I have the tapes here somewhere............
I don't know the scale they are grading on for these numbers that came
from your tests. What they are calling IgA might be total IgA since
there is mention of Gliadin IgA elsewhere.
Hope this is helpful.
The blood tests are negative. The total IgA looks a bit low - what is the
range?
If she has a diagnosis of DH from a biopsy, then she has CD and no further
testing is needed. This is from Dr. Fasano's hospital
Is it necessary to have an intestinal biopsy to confirm the diagnosis of
Dermatitis Herpetiformis (DH)?
A skin biopsy is sufficient to confirm the diagnosis of DH. DH is the skin
manifestation of CD.
_http://www.celiaccenter.org/celiac/faq.asp_
(http://www.celiaccenter.org/celiac/faq.asp)
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