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Dear listmates, I am one of those Celiacs - hard to diagnose but whom
has had severe symptoms with three gluten challenges directed by my
Gastroenterologist. Attending the diagnosis meeting with my
Gastroenterologist was my husband who is a PhD immunologist. The doctor
was excited that they could speak each others lingo and I could
understand some of it since he is aware we've been doing a lot of
medical research. However, I did need translation.
As you may know, I was negative on the anti-endomysial, anti-gliadin, and
transglutaminase blood tests as well as negative for "blunted villi" or any
grade of villous atrophy on all 10 of 12 biopsies taken from the second part
of my duodenum in an endoscopy performed in December 2001. In the Given
capsule endoscopy (experimental pill w/ tiny camera) performed a month
later, he discovered that the abnormalities (nodular mucosa, scalloping of
the duodenal folds, flattening of the valvulae conniventes, etc.) had
disappeared after I went on a gluten-free diet. He agreed with me that such
abnormalities suggested the presence of villous atrophy and Celiac disease
but they are not definitive for Celiac disease.
However, my Gastroenterologist (a Univ. of California doctor with approx. 25
years experience) says that he will give me a diagnosis of "most likely
gluten-sensitive enteropathy" as the cause of my malabsorption symptoms
(weight loss, diarrhea, joint pain, fatigue and weakness, abdominal pain)
which was further supported by fecal fat stool tests. He based his
conclusive diagnosis on my symptomatic improvement on a gluten-free diet of
almost eight weeks. He had also excluded all other causes he was testing
for (i.e., giardia, parasites, occult blood, Chrohn's, etc.). He said the
reason why I'm getting negative results is because I probably have "patchy"
mucosal damage. FYI, I have two medical research papers corroborating that
the blood tests can miss up to 20-25% of the cases with subtotal villous
atrophy (less blunted villi) or even nonflat mucosa (or normal villous
architecture), but have an increase in the no. of intraepithelial
lymphocytes (IELs are the cells attacking your villi). The pathologists
didn't count my IELs either. Also, my doctor said, "As you know, celiac
disease has been traditionally diagnosed by jejunal biopsy. He then
proposed that if I wanted the absolute diagnosis, he could have me take a
fourth gluten challenge and he would specially order an enteroscope to take
a bunch of biopsies of my jejunum. He added that the shortcoming of the
December endoscopy was that he could only take biopsies of my duodenum since
the endoscope was too large to reach the jejunum. I explained that I am
satisfied with the diagnosis because my body couldn't hold up to another
gluten challenge and after the 3rd gluten challenge, I was having heart
problems and have since been diagnosed with "mitral valve regurgitation".
No more Russian roulette for me.
Other conclusions made by my Gastroenterologist based on the Given capsule
results and December endoscopies were Gastritis (stomach inflammation) which
looks like red stripes on the stomach lining and he noticed I have a problem
which involves "slow stomach emptying". He said that the implication of
slow stomach emptying is a future risk of Type 1 Diabetes Mellitus. As you
listmates may know, the New England Journal of Medicine (Vol. 346, No. 3,
1/17/2002) cites Type 1 diabetes as a DEFINITE association to Celiac
Disease. Diabetes Mellitus is a group of disorders with one common
manifestation; Hyperglycemia. You can see an expanded picture of how Celiac
Disease can play a role in creating other complications or manifestations.
My Gastroenterologist explained that slow gastric (stomach) emptying results
in the food sitting there in the stomach and fermenting which is a process
by where the bacteria in the stomach are eating your nutrients, producing
acids, alcohols, and gases, while leaving less nutrients available for me to
absorb. I asked him why I am having trouble digesting fats and not gaining
weight quickly; He said that I am still malabsorbing and he thinks that the
slow gastric emptying plays a role in both those problems. No wonder the
Gastritis is taking longer to resolve because it being irritated by the
fermentation of the food.
He advised that I eat small meals frequently and foods that are
absolutely neutral Ph, non-acidic and non-alkaline with low fat such as
broths for more easy absorption as well and to increase stomach transit
time: (the following list is written by my husband) Moderate acids:
acetic acid (vinegar, sour taste), peppers (hot spicy taste such as
chilis and black and jalapeno) Weak acids: ascorbic acid (vitC)
Alkaline: bitter taste foods (bell pepper, brussel sprouts, bittermelon)
My doctor commented that everything in your gut has to run perfectly in
order to absorb fats and fats slow the stomach transit time. To make me
feel better, he said that he's tried the gluten-free baked stuff and
thought it tasted pretty good. I told him that I mill my own flours and
bake my own bread and it doesn't always taste as good as wheat but I'm
glad that I can still have bread and am thankful for that.
All those Celiacs still recovering with stomach or other residual problems -
let's make a run to the wellness finish line! Also, I'm interested in
hearing from anyone diagnosed with Diabetes, Hyperglycemia, or slow gastric
emptying, and residual stomach ailments. What is working for you and how
were you diagnosed? I've been reading that Diabetes has been found in
people with latent Celiac Disease.
P.S. Those trying to get a diagnosis, ask if IELs will be counted and if
the jejunum can be biopsied in addition to the duodenum.
Regards, Laura
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