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matthew1989

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MisterSeth Enthusiast

calcium deficiency is a legitimate concern when cutting dairy, and wheat/breakfast cereals are most people's primary source of magnesium and b vitamins. plenty of other foods have these things, but you pretty much have to throw the food pyramid out the window when you're celiac


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cyclinglady Grand Master

Did you see or meet with the dietician last week?    I am concerned that you are not eating enough (eat until you are full and eat frequently for now). and that your diet is not varied.  Did you doctor run a vitamin and mineral panel?  Consider starting dairy.  Start with yogurts and cheeses.  

Why no coffee?  That could cause withdrawal for sure, if you stopped coffee.  

MisterSeth Enthusiast

lactose-free milk/yogurt is also higher in protein than its lactose containing counterparts. not sure if the bacteria cultures are still active in the yogurt though, active cultures are important for a damaged gut

  • 1 year later...
JenniK Contributor
On 5/18/2020 at 2:22 PM, notme! said:

yes, definitely try cooking your veggies/fruits.  in the beginning, I could not eat raw veggies but cooked were ok.  after a while, I could eat raw things.  also, pay attention to your fructose intake - I had issues with fruits for a bit.  now, I can eat almost anything except gluten.  it takes TIME, too, so don't forget to take it easy on yourself.  i'm proud to say I can now eat and leave the house without any emergency bathroom breaks.   that being said, I had 25 years worth of damage, because the doctors were treating all my symptoms without actually finding the (celiac) cause.  

lolz, the dumb thing I am having issues with now is, weirdly, lettuce..... ?  and only if I eat it too close to bedtime.  my gi doc says it's common...….   yay......?

out of curiousity, I asked him last visit if certain foods can 'jump the line' like, if you eat something and your body says NOPE! and he said most definitely.  (blueberries!  lolz!  but that's the fructose thing)  and it will go to the front of the 'exit' 

FYI: I tried to quote just the part about lettuce, but it will only quote the whole thing... ANYhoo, lettuce gives me major problems too. My younf adult kids make fun of me, saying, ‘Mom, you literally just said that you can’t even eat lettuce! No one is allergic to lettuce!’  But lettuce rips me up. I can eat a whole spinach salad any time, but lettice goes straight through me almost immediately. I don’t known what it is...

It is another frustrating thing about this condition bc i am trying to eat healthy, but often the healthiest foods give me the worst problems. Lettuce, avocado and broccoli and fresh fruit wreck me much worse peanut m&ms. It feels like some junk food addict’s excuse, but it is true. I actually LIKE those healthy foods but i have to be very careful not to get too much fiber at once, or there is trouble. 

  • 1 month later...
GodsGal Community Regular
On 7/21/2021 at 9:45 AM, JenniK said:

FYI: I tried to quote just the part about lettuce, but it will only quote the whole thing... ANYhoo, lettuce gives me major problems too. My younf adult kids make fun of me, saying, ‘Mom, you literally just said that you can’t even eat lettuce! No one is allergic to lettuce!’  But lettuce rips me up. I can eat a whole spinach salad any time, but lettice goes straight through me almost immediately. I don’t known what it is...

It is another frustrating thing about this condition bc i am trying to eat healthy, but often the healthiest foods give me the worst problems. Lettuce, avocado and broccoli and fresh fruit wreck me much worse peanut m&ms. It feels like some junk food addict’s excuse, but it is true. I actually LIKE those healthy foods but i have to be very careful not to get too much fiber at once, or there is trouble. 

Lettuce can be problematic for me as well. It depends on what type of lettuce it is. Iceberg lettuce causes TERRIBLE gas and bloating. The last time I ate an iceberg lettuce salad, all I could do was lay on the couch for hours and moan. I can eat romaine lettuce, green leaf lettuce, red leaf lettuce, and spinach. But iceberg lettuce, no way! I mentioned it to my doctor. He said that it is not uncommon. And since iceberg lettuce really has little nutritional value, I should just avoid it. (This happened YEARS before my celiac diagnosis.) 

Raw broccoli, cauliflower, and excessive raw cucumbers have also been problematic for me in the past. Cooked, steamed, or pickled, they were fine. I guess that cooking them made them easier to digest?

After 18 months of being gluten free, I have been able to eat a tiny bit of raw broccoli, and I can eat a whole small cucumber without problems. 

I doubt that I will try iceberg lettuce, though. Too much of a BAD memory. 😊

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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.
    • MogwaiStripe
      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. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • 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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