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Turns Out It Is Lactose Intolerance


USF1970

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USF1970 Apprentice

At the first of the year I posted that after 12 years of being my doc's 'most compliant celiac disease patient' I was losing weight and as a result of an endoscope my villa was once again flattened/blunted. I was having mild stomach discomfort and I blamed it on cc w/such items as BRM hot rice cereal and UDI bread. Now that I'm lactose free, I can once again eat those items (however Tinkyada pasta still causes diarrhea and bloating). My question is this.......lactose intolerance can cause weight loss but does it also cause villa damage? My doc did some blood work and he said my celiac disease numbers are very low, whatever that means.....I'm continuing on and trying not to worry about the intestinal issues. I'm not losing weight anymore but I'm not gaining either(thank you....). Just curious. As always, many thanks for everyone's input.

Linda in Savannah, GA


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According to the book, "Breaking the Vicious Cycle" by Elaine Gottschall, "The flattened or blunted intestinal surface has been reported in innumerable disease states: infectious heptitis, ulcerative colitis, parasitic infections of the intestine including various types of worms and one-celled parasites, kwashiorkor, soy protein intolerance, intolerance to cow's milk protein, intractable diarrhea of infancy, Chron's disease, and bacterial overgrowth of the small intestine". This appears on page 41.

It stands to reason that if your villi are blunted you will be lactose intolerant. But are you casein intolerant, since casein is the protein fraction of cow's milk which Elaine says can cause villous flattening. On the other hand, you may not tolerate soy, which could have flattened the villi and made you unable to digest the lactose. Or you could have one of the other conditions she mentions. What other testing did your doctor do?

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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