How Much Gluten is Safe in Sensitive Individuals?

Celiac.com 11/02/2018 - In sensitive individuals, some foods can cause allergic or other immune system reactions.  These reactions can be as mild as a little fatigue (many physicians believe the #1 symptom of allergies is fatigue), a mild headache, some congestion, or a ‘fuzzy brain’.  Or, the reaction can be as severe as immobilizing migraines, asthmatic attacks and even life-threatening anaphylactic shock.

Many of us have felt these types of reactions to foods.  And if I tell the truth, I am guilty of many times in the past wondering, “how far can I push this?  How much of this food (which isn’t good for me) can I eat without getting sick?”

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Researchers are now telling us, and studies are being published that gives answers to these questions.  It seems to depend on the level of sensitivity.  When a person has elevated antibodies to wheat or gluten, the evidence is suggesting ‘none at all’ is the answer to the question. 

In a recent paper entitled ‘A Milligram of Gluten a Day Keeps the Villous Healing Away’, the authors tell the story of a 32-year-old woman.  Her symptoms of abdominal pain, diarrhea and weight loss were present for over 10 years.  She also had a history of failure to thrive in childhood (one of the smallest children in the class throughout her education), late onset of menstrual cycles, recurring anemia, and hair loss.  This is the history of a body physically ‘just barely getting by’.  A positive blood test indicated elevated antibodies, and an endoscopic examination (biopsy of the intestines) confirmed Classic Celiac Disease.

She had followed a wheat and gluten free diet for 16 months.  Diarrhea and abdominal pain stopped completely and weight loss had been recovered.  Some of her blood work had returned to normal.  However anemia, hair loss, and increased antibodies suggestive of persistent Celiac Disease were still present.  A focused interview revealed she was not on a strict gluten-free diet because she was taking a communion wafer and had several other unintentional dietary lapses.  After discussion with her Doctor she refused to stop taking a daily fragment of communion wafer.

Eighteen months after beginning a complete gluten-free diet, but still taking a communion wafer, her anemia, hair loss, diarrhea, and abdominal pains were gone.  Most blood work was now normal.  However some blood markers of possible Celiac Disease were borderline high.  From how her body was functioning, one would think she was healed and her Celiac Disease was gone.  However her repeat biopsy still showed the highest degree of severe intestinal damage—Marsh IV villous atrophy, and an increased number of intraepithelial lymphocytes, putting her at increased risk of osteoporosis and a severe form of cancer of the intestines (T-cell lymphoma). 

Her Doctors were concerned.  She was following the diet perfectly.  No hidden glutens in medications or foods.  All of her symptoms were gone.  She felt very good.  But why weren’t her intestines healing?  Could it be the fragment of communion wafer she refused to give up for religious reasons?  She did not want to have this discussion and continued to refuse abstaining from the wafer fragment.

An evaluation of the communion wafer revealed that it contained approximately 0.5 mg of Gliadin (1 milligram of gluten).  That’s about 1/16 of a thumbnail.  Now remember this woman’s symptoms had all but disappeared, she felt fine and her blood work was much improved (not quite normal, but close).  She was very reluctant to give up her daily fragment of Communion wafer.

Eighteen months later she returned and surprised her Doctors by announcing she had given up the wafer.  A repeat biopsy now showed her intestines had healed and were completely normal.

Discussion: What can we learn from this case?

1. In sensitive individuals (with elevated antibodies to wheat or gluten), the symptoms are not just in the intestines.  This person had suffered for years from anemia, hair loss, failure to thrive, weight loss, and hormone irregularities.
2. Implementing a wheat and gluten free diet brought favorable results in eliminating all of the above symptoms
3. Even with the elimination of symptoms and the return to normal of her blood work, ongoing very serious damage was occurring in the intestines without any noticeable symptoms.
4. It only took 1/16th of a fingernail worth of gluten per day to stop intestinal healing and create great risk to life-threatening diseases.
5. Blood antibody values that are border line may be an indicator of more aggressive damage occurring inside the body—not identifiable without an endoscopic exam.

Conclusions

1. One can be completely fooled as to whether they are having serious damage occur in their body if they just go by symptoms (or a lack of symptoms).
2. Testing for wheat allergies and Celiac Disease must include comprehensive blood work and, when indicated, an endoscopic examination.
3. If either test comes back positive, a complete elimination of wheat and gluten is necessary—not even 1/16th of a fingernail’s worth-not even a crouton on a salad can be considered harmless.

Personal Note
It is a necessity to do an endoscopic exam with positive blood work to wheat and/or gluten allergies.  I’ve always thought doing the blood work was enough, especially in children.  I was wrong.  In researching this further I’ve found many studies that emphasize this necessity.  Blood work comes first, but if positive, an endoscopic exam is essential.  Otherwise, as in this study, severe damage may occur without any symptoms whatsoever.