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Celiac Disease Not Healing / Additional Food Sensitivities

January 9, 1999 post by Ron Hoggan to the Celiac Listserv:

Im posting this response to the list as this information may not be common knowledge in the celiac community, and perhaps it should be. There are a number of reports, regarding celiac patients, of coexisting intolerance to milk proteins. One recent report was of an investigation for cross reacting antibodies. They found none, but a number of these patients displayed antibodies against gliadin and parallel anticasein antibodies (1). Another group has indicated that 36% to 48% of celiac patients demonstrate antibody reactions to milk proteins (2), although there are some reports that the frequency of such sensitivities reduce with treatment of a gluten-free diet (3), although the latter publication reported a higher initial frequency of reactions to milk proteins. There is another report of one celiac patient thought to have refractory sprue who recovered with the additional dietary exclusion of egg, chicken, and tuna (4). The patient became very ill before the possibility of immune reactions to other dietary proteins was considered. These reports suggest to me that we need to be vigilant about the possibility of additional food sensitivities. Before leaping to the use of steroids, further antibody testing seems prudent. The therapeutic use of systemic steroids carries the potential for some very dangerous side effects. Dietary exclusion of allergenic proteins, on the other hand, is just an inconvenience, one that most of us are already well versed in.

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but this one has a special enzyme attached to it. After washing the plate, only blood samples that contained the antibodies of interest will have the special enzyme attached to the surface. Now a specific chemical can be added that interacts with the enzyme to produce a detectable signal which is accurately "counted" with an instrument.
'); return false">ELISA or similar testing ought to be done prior to beginning steroids, as such drugs may be unnecessary, or they may compromise the accuracy of such testing.

Sources:

  • Paranos S, et al. Lack of cross-reactivity between casein and gliadin in sera from coeliac disease patients. Int Arch Allergy Immunol. 1998 Oct;117(2):152-4.
  • Volta U, et al. Antibodies to dietary antigens in coeliac disease. Scand J Gastroenterol. 1986 Oct;21(8):935-40.
  • Scott H, et al. Immune response patterns in coeliac disease. Serum antibodies to dietary antigens measured by an enzyme linked immunosorbent assay (ELISA). Clin Exp Immunol. 1984 Jul;57(1):25-32.
  • Baker AL, et al. Refractory sprue: recovery after removal of nongluten
  • Dietary proteins. Ann Intern Med. 1978 Oct;89(4):505-8.

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Wish I could give you a hug. Unfortunately I know how that feels with Neurologists, Internists, Endocrinologists, Rheumatologists, GIs..... I got so tired of crying my drive home after refusing yet another script for Prozac. I do hope your GI can give you some answers even if it is just to rule out other possible issues. Keep on the gluten and we are here for you.

It is too bad that so often a full panel isn't done. Glad your appointment got moved up and hopefully you will get a clearer answer from the GI. Do keep eating gluten until the celiac testing is done. Once the testing is done do give the diet a good strict try. Hang in there.

That makes sense...I cried with relief when I got my diagnosis just because there was finally an answer. Please know that you are not weak or crazy. Keep pushing for testing. It could still be celiac, it could be Crohns. Push your Dr's to figure this out. Best wishes.

Thank you all very much. I actually cried when I got the answer. I wanted an explanation that I could "fix." Now I'm back to thinking I'm just weak and possibly crazy. I know I'm not crazy, but you know.

From what I have read online there is about a 1-3% chance of getting a false positive for celiac disease from a blood test. Was it a blood test that you got done? It may be worth your while to get a biopsy or more testing just to confirm it. I know being gluten free is a pain but it is better than getting cancer or other auto immune disorders.