<<Disclaimer: Verify this information before applying it to your situation.>>
Do you FEEL BETTER on a GF diet? If you had been plagued with chronic
diarrhea, like I was, and it goes away on a GF diet, who care what the
blood tests say?! The bottom line is, how do you feel?
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My advice would be to go on a strict GF diet for several weeks and see
how you feel. That's the true measure of success in this, how you
feel. I, too, would have been happier with a more conclusive medical
diagnosis at the start of my experience, but after almost a year of
really GF living (it took me a year of trial and error before that to
learn how to do it), I wouldn't trade this diet for anything. It has
made such a difference in my life.
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List members:
I'm searching for help.; I searched the archives but couldn't find an
answer to this one. I've been ill for the past year and a half (lost
60 pounds, muscle and joint ache, nausea and vomiting, etc.) to the
point that I've been in the hospital twice. After tons of neg. tests,
my doctor finally did blood work for CD; it came back positive and he
put me on a gluten free diet. I improved significantly. They then
asked me to do a gluten challenge so they could do a biopsy; I became
very sick, lost more weigh, and ended up in the hospital again. The
biopsy just came back negative, and I was told by the gi that although
my intestines are inflamed, there is no villi damage; so therefore, I
do not have CD. I should not restrict my diet as I need the carbs from
a gluten containing diet to feed my very diminished body. Before I
start searching for whatever is wrong, can someone explain how you can
have positive blood work and relief of symptoms on a gf diet, but a
neg. biopsy.
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It is not necessary to have all positive results not to be able to
have gluten. I have an IgA deficiency and they were false neg. Since I
have a deficiency to starte with and you are supposed to have a high
IgA reading, it didn't make sense. The specialist in immunology that I
went to in NYC told me that if she were I, she would never go back to
eating gluten. I get sick with cramps and diarrhea and feel better now
so I never looked back. Why is it so important to have #s to support
what you are eating as long as you feel better? I have been on this
diet 27yrs and am allergic to many other foods so am limited as to
what I can eat but at least I can get out of the house now.
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My results were 2 negatives and 2 positives. The biopsy came back
negative but the more I read the more I realize that, unless a
specific lab which utilizes experts in deecting small intestine damage
reads the slide, most lab techs don't y know what the heck they are
looking for. I have read of so many cases where shortened or stunted
villi were taken to be ok, when in fact, that is not the case. Also,
one has to have been eating glutenous foods for 6 months at a stretch
to have si damage, according to another article I read.
As my gasteroenterolist advised me, go gf for 6 months and see if
my symptoms decrease. After 2 months gf, I can attest that there is
no way I will go back to eating bread and such. The only caveat I have
about going gf is how suddenly other food "allergies" appear--such as
citrus. Now my nose stuffs up,my eyes burn, my throat gets sore,
which it never did before (either that, or I never noticed it).
On a final note, Ifinished reading an article about the
preponderence of people who have a gluten intolerance, not celiac. As
our bodies age we lose some ofthe enzymes necessary for
digestion--among them, the enzymes to digest milk and beans. It seems
that many people also lose the enzymes which digest gluten!
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you may be IgA deficient, so it shows normal results. this happens quite
a lot. Your diagnosis sounds pretty conclusive .
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Mark, do you feel better on a gf diet? My opinion only, but I think it
is the first step in listening to our bodies and getting healthy.
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My daughter's blood tests were just like yours, so I thought you might be
interested in her story. She is 11 yo and has attention deficit disorder
(ADD). When I first took her to a developmental pediatrician, she ordered a
bunch of lab tests - anti-gliadin IgA & IgG among them. When I asked why,
she said gluten intolerance was much more common in this group of kids and
they improve after going GF.
My daughter also has Crohn's disease (a lifelong inflammatory disease of
the small intestine that causes pain and diarrhea, sometimes bleeding,
infection, etc). I asked her peds GI to draw the labs for the
developmental peds (so insurance would pay) - he's a good sport and agreed.
He thought the dev. pediatrician was crazy to be checking anti-gliadin
levels.
Lo and behold the anti-gliadin IgG came back high positive. The peds GI
couldn't believe it. He repeated the test. It was even higher. He said
he hadn't seen that before, but that he imagined that because Lauren has a
'leaky gut' from the Crohn's disease (it's always sort of oozing blood)
that she was getting gliadin into her blood stream and making antibodies to
it. He put her on a GF diet.
Here's the good part.........After just a few weeks on the GF diet, the
diarrhea that Lauren had had for years cleared up. We had always thought
it was just from the Crohn's disease (Crohn's is only rarely seen with
celiac disease). Lauren started to feel better. Her dose of prednisone was
cut by 75%. She grew for the first time in 3 years. Her reading level
improved.
but - she is only anti-gliadin IgG positive.
So, just 'cause you're only IgG positive, doesn't mean GF won't help a
LOT!
My suspicion (I am a programmer, but formerly a nurse) is that there are a
lot of folks who are gluten intolerant - not full blown celiac, just IgG
positive - but docs don't know or think to test for it yet. Ten years from
now, it may well be different.
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My family has negative blood test, positive biopsies. Labs are not
always reliable and I have heard disscusion about families that have
negative blood test as a group for unknown reasons that do actually
have CD.
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The main way that celiac disease has been diagnosed for years is via
the biopsy. You have celiac disease if your biopsy is positive. The
biopsy looks at the small intestine. It is positive only if there is
flattening of the villi (intestinal damage). This damage only occurs
in celiac disease. You also have Gliadin IgG Ab: strong positive.
This also indicates celiac disease. Celiac disease is a genetic
disorders. There are several genes that cause it. IT depends on which
gene that you carry as to which antibody/ies your body will produce.
That is why the doctor checked for more than one antibody in the first
place. The "essentially 100%" statistic that you mentioned basically
states that there are a few exceptions. Unfortunately, you are one of
those rare exceptions. Everyone's body is unique.
To sum all this up your tests and biospy do indicate that you have
celiac disease. The GF diet is difficult. IT is understandable that
you would want have to follow it for a lifetime. However, you will
find that after you are GF for awhile, you will feel better. You have
a very good doctor. Not all doctors can diagnose celiac disease. Some
only take the Gliadin IgA and do nothing else. Resulting in many
individuals with celiac disease suffering for many years without any
hope of getting better. You have know what is wrong and how to deal
with it.
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All my blood work (including IgG and IgA) came back negative. I
wasn't even anemic. I had chest pain, and very minor stomache
problems and after 2 Endoscopies with bipsies my Doctor is convinced I
have it. I resumed eating gluten after 6 months of a GF diet and I
really still don't notice a difference?? Bottom line, everything I
have heard/read the blood test are not accurate and the
biopsies/Endoscopy is. I think there is a possibility they could be
wrong, after all most people get better on a GF diet. I didn't so my
theory is why sustained if I didn't feel any better. I am seeing
another Doctor (some day).
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I've been diagnosed with CD through blood work and biopsy. My Dr. said
the biopsy was only necessary because my blood work wasn't 100%
consistent with CD, but the biopsy was definitely positive. I am IGA
deficient. The diet made a huge impact on my symptoms though and that
was all the proof I needed. It has been the only thing that has worked
for me in my thirty years of searching.
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Even though you had those that were negative, that does not mean that
you are not Celiac. If you feel a lot better GF, that is your answer.
Everyone will tell you that both blood tests and biopsies can be
unreliable and the ultimate test is how you respond to the diet.
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Your gastroenterologist is quite right. Rostami and Mulder working in
Arnhem, Holland, found only 31% of their patients with partial villous
atrophy had positive endomysial antibodies (ema's). Also Dickey from
N Ireland found overall only 80% of his patients had positive
endomysial abs. Also a turkish group found 60% of partial villous
atrophy patients had positve ema's. I think that the ema's positivity
reflects the degree of villous atrophy rather than ruling out celiac.
In other words, Dickey found that 20% of negative ema's were still
celiac. There is a review of diagnosis which is great and is in the
archives. It was written by Karoly Horwath.
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