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Celiac + Kidney Stones


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CSC Newbie

I need your assistance.

I was so excited after reading the article on celiac and kidney stones by John Libonati (Open Original Shared Link). His article describes me from amebic dysentery, to surgeries and nine years of antibiotics, to celiac disease, and now to my annual production of kidney stones. I have worked so hard over the last ten years, staying on a strict celiac diet. This article was a breakthrough in information for me, but I do not have any answers of


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missy'smom Collaborator

I need your assistance.

I was so excited after reading the article on celiac and kidney stones by John Libonati (Open Original Shared Link). His article describes me from amebic dysentery, to surgeries and nine years of antibiotics, to celiac disease, and now to my annual production of kidney stones. I have worked so hard over the last ten years, staying on a strict celiac diet. This article was a breakthrough in information for me, but I do not have any answers of

  • 1 year later...
gaingus Rookie

I just stared having kidney stone issues for about 5 months now to the point I am seeing a nephrologist and he has me on 10 mEq (1080 mg) of potassium citrate three times a day to prevent future recurrances of stones. I keep asking him if it is related to my celiac but he keeps saying no. I have read many articles and studies linking the two together because of the mal-aborbtion issue.

Reba32 Rookie

check out the diet suggestions on this site Open Original Shared Link

AVR1962 Collaborator

Goodness, I had no clue! I have had kidney stone issues for 25 years! I have two 8 mm stones lodged in my left kidney in a dry pocket where even if they did do ultrasound treatment they still could not pass because no fluid pass thru the area and surgery is too intrusive. I can tell you what has worked for me to stop have all the issues, not sure if it will work for you or not. #1 DO NOT drink tap water. The chlorination in tap water was causing the biggest part of my issues. And of course what do they tell you to do but drink more water, ugh. I also drink NO caffeine. My water consumption is 2-2 1/2 liters water daily, approx half of that is mineral water. At the slightest pain in my back I start drinking a liter of 100% cranberry juice a day and no alcohol during this time. I have managed to keep the stones away for years doing this. Careful too with herbs used as diuretics.....made a big mistake this past winter with an herbal supplement and ended up passing small stones (cystals) for 3 days which was extremely painful.

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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