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Low Potassium


color-me-confused

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color-me-confused Explorer

While further investigating me for celiac my doc ordered some tests for nutrient levels. My potassium level scored low, low enough to have me eating lots of bananas and OJ before re-testing me next week.

Interestingly, for quite some time before going gluten-free I would wake up with very stiff and achy muscles and joints (not normal for 36, in hindsight!). It would take about 45 minutes of moving around the house before I felt normal. This vanished after less than a week being gluten-free.

How common is low K in celiac? I loathe oranges, although I am cool with eating lots of bananas. Is this something that should improve over time?


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mushroom Proficient

I think it will take more than bananas to bring your potassium levels up. You need a prescription potassium supplement. However, it is not easy in U.S. to find one guaranteed gluten free as I found out last summer. I went the bananas route over a three-day weekend because I couldn't get the supplement, was practically swinging from trees I ate so many, and it was enough to get my blood levels up a bit above low, but there was no potassium in my cells and I went into atrial fibrillation due to low potassium anyway. It took me 24 hours in ICU to convince the doctors I needed potassium.

GFreeMO Proficient

I have that problem myself. Orange juice helps a lot as well as bananas. Not sure if you can have milk but milk has the same amount of potassium as orange juice. I have the achy muscles and stiff joints too. In the morning, I have coffee and OJ and a banana and rice chex with milk. It helps a lot. If I skip this meal, I feel it.

color-me-confused Explorer

I think it will take more than bananas to bring your potassium levels up. You need a prescription potassium supplement. However, it is not easy in U.S. to find one guaranteed gluten free as I found out last summer.

I didn't realize there was an Rx version, although I guess that's not too surprising. My local pharmacy is very good (little indy place, not giant chain) so if there's a gluten-free version on the market they'll find it. Do you know what brand it was? I'm due for my new blood work in 5 or 6 days and I'll see if bananas (yum) and OJ (ick) do the trick. the lab failed to mail me my actual blood test numbers so I need to call them about that too. I'm also waiting on the result of the gene testing for celiac which is expected to be positive.

jstwnttbhealthy Newbie

also, coconut water has lots of potassium - 670 mg for 11.2 oz :)

color-me-confused Explorer

Got the numbers today and they were below normal. But I had the same blood test last fall as part of a physical and the potassium is down 8% in 6 months. Last fall it was on the lowest level for the "normal" range.

And I'm positive for the celiac gene. I still don't have a single lab test that is 100% unambiguous for celiac, but all signs are pointing in that direction, basically my doc thinks we happened across it in the early stages during the biopsies investigating reflux. Since going gluten free I've been able to quit Prilosec and I think I'm almost done with the acid rebound problem associated with that kind of drug.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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