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       Wheat Starch Intolerance in Patients with Celiac Disease
       --------------------------------------------------------
   LJ Chartrand, RD, MSc; PA Russo, MD; AG Duhaime; EG Seitman, MD
                an article from the June 1997 issue of
          the _Journal of the American Dietetic Association_
                     summarized by Lynn Rainwater

Reprinted with permission from the September 1997 newsletter of the
San Antonio Celiac Sprue Support Group.

The following summary and comments on this research report are by Lynn
Rainwater and have been reviewed by Cathie Winmill, MS, RD.  [They've
also been reviewed by Dr. Alexander and Dorothy Vaughan, the TCCSSG
physician and dietitian advisors, as is all of the material in this
newsletter.  Note that this study was mentioned briefly in last
month's newsletter, but this article is more in-depth and Lynn's
comments are of great help in interpreting the study.--ed.]

The objective of the research was to evaluate the results of celiacs
eating a small amount of gliadin in wheat starch over an extended
period.  Gliadin is the ethanol-soluble fraction of gluten which we
celiacs are sensitive to; for simplicity, just think:  gliadin =
gluten.

Why wheat starch?  You have probably never heard of wheat starch,
because it is not in general use in the United States.  We define
gluten-free (GF) as zero gluten.  However, in 1988 the UN Food and
Agricultural Organization (FAO) and the World Health Organization
(WHO) stated a product could be labeled GF if it contained 1 mg
gliadin or less per 100 g of product.  Therefore, some European
countries permit products containing wheat starch in small amounts to
be labeled and sold as GF.  In this Canadian study, imported European
products with wheat starch were used (Juvela flour and Aglutin bread
made with Juvela flour).

The study was designed as a one-year trial of the addition of wheat
starch to the diet of biopsy-proven celiacs who had never eaten wheat
starch.  Although it is desirable to "double-blind" scientific
studies, in this case with some participants using products with wheat
starch and others using products without wheat starch, this was not
possible, as products with gluten and gluten-free products are so
different.  Therefore both the study group and a control group of
celiacs who had previously used and apparently tolerated wheat starch
ate the same wheat-starch products.  It would also have been desirable
to obtain before/after biopsies of all participants in the study, but
this was not done because the celiac patients refused to undergo
repeated biopsies.

The wheat starch products used in the study contained 0.75 mg.  of
gliadin per 100 grams of product.  For comparison, white bread made
with wheat flour contains 6,200 mg of gliadin per 100 grams of product
(about three slices of bread).  Both the study group and the control
group were asked to consume four to six slices of bread with wheat
starch [but otherwise GF] for a year.  This was equivalent to 0.75 mg.
of gliadin per day.  The patients reported that even such a small
amount of wheat starch resulted in bread with taste and texture they
preferred to GF bread.

Within 2 weeks to 8 months, 11 of the 17 study patients reported
symptoms disturbing enough to alter their well-being.  4 reported
slight or occasional symptoms, and only 2 reported no symptoms.
Although the symptoms varied widely from person to person, they were
consistent for each individual.  11 had diarrhea, 9 gas, 7 abdominal
pain, 6 fatigue/irritability, and 2 bone pain/myalgia.  Of the 3 with
dermatitis herpetiformis (DH), 2 developed the typical rash with
blisters one month into the study.

As the symptoms developed and became more bothersome, patients opted
to stop eating the bread with wheat starch.  By 10 months the trial
was discontinued as only 2 patients still remained asymptomatic and
wished to continue.  For the celiac patients, the adverse symptoms
resolved within 10 days to 3 weeks of discontinuing the wheat starch
bread.  For the DH patients, the lesions resolved within 2 weeks after
they stopped eating wheat starch.

A before-and-after comparison of lab tests for the study group showed
no weight loss, no biochemical changes (hemoglobin, serum iron, or
folate levels), and no immunologic changes (antibodies).

What can we learn from this research study?

  1. Lab tests do not show changes resulting from small amounts of
     gluten, even though patients may be having adverse reactions.  So
     a biopsy remains the gold standard for verifying the status of
     intestinal villi.

  2. Damage may be caused by extremely small amounts of gluten eaten
     over a prolonged period.  The amount of gluten consumed in this
     study was less than one thousandth of the amount in four slices
     of regular bread.

  3. As studies have shown, the long-term effects of regular ingestion
     [by celiacs] of even small amounts of gluten can include a
     greater risk of cancer, growth failure, osteoporosis, and (in
     patients with epilepsy) cerebral calcification.  We celiacs must
     exert great care in avoiding all gluten.

  4. The effects of eating small amounts of gluten may not be
     immediate--it may take several weeks before the symptoms
     surface--but the damage does take place.  Therefore, we should
     not assume we've successfully avoided repercussions when we don't
     suffer immediately after cheating on our GF diet.

  5. The researchers tested two brands of buckwheat flour and found 40
     mg.of gliadin per 100 grams of flour in one, and 4 mg.  of
     gliadin per 100 grams of flour in the other.  As buckwheat does
     not contain gluten, cross-contamination during milling is
     probably the reason for this finding.  This explains why some
     celiacs report symptoms after eating buckwheat flour.

  6. Some celiacs can eat small amounts of gluten without showing
     symptoms.  (2 of the study patients, and all 14 of the control
     patients in this study demonstrated this tolerance.)  This does
     not mean they would show no evidence of damage if biopsied.

  7. In the Finnish study [published in the New England Journal of
     Medicine] which supposedly showed no damage when oats were added
     to the celiac diet, all patients in the study were consuming a GF
     diet (per the FAO and WHO definition) which included wheat
     starch.  "None of the patients had completely normal mucosal
     histology, whether consuming oats or not."  [One could draw the
     conclusion that abnormal mucosal histology was due to the regular
     ingestion of wheat starch in the diet, and that this might mask
     any effects from the oats--ed.]  Under these conditions it is
     reasonable to await further research with oats before adding them
     to the GF diet.

  8. Celiacs in the United States are becoming increasingly familiar
     with Canadian mail-order vendors.  As they import many European
     products, we should always ask, when ordering, if the product
     contains wheat starch.  If it does, we should decline to buy the
     product and tell the vendor why.