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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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      Current careteam is still up in the air about my celiac thanks to me googling "celiac specialist" what popped  up was once known as a good name hospital back in the days. I went in for answers for my declining health, it was the autoimmune part that did me in, being a former bus driver.I read that in my medical records so easily downplayed, i refused the gluten challenge! Why the hell would I eat Gluten when im Celiac coming to them for answers when my body is falling apart? Glutenfree since 1994. They did unnecessary colonoscopy KNOWING im glutenfree. A celiac specialist would know that would be pointless to do if not eating gluten and it was done!Im so angery with that hospital for not explaining celiac disease and withholding information, Downplaying my ailments , mental distress,  causing more health issues, ect. All this could have been avoided If medical records were sent, when asked, explained and done properly. Im so angery.I do have the celiac dietitian on here in June and linked her up to my current health care yesterday, fingers crossed hopefully with that, the understanding of celiac is explained it's not just a food allergy will be understood. 
    • Scott Adams
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      Thank you for sharing your experience, Florence. It’s important to clarify, though, that proteins like zein in corn, panicin in millet, and kafirin in sorghum are not considered gluten and have not been shown to trigger the same autoimmune intestinal damage seen in celiac disease. Some people with celiac disease do report symptoms with certain gluten-free grains, oats, or other foods, but that reflects individual intolerance or sensitivity—not a proven “gluten-mimic” effect that damages the small intestine. Certified gluten-free oats are considered safe for most people with celiac disease, though a small subset may react to avenin. If specific foods consistently cause symptoms for you, it makes sense to avoid them personally, but it’s helpful for readers to know that these foods are still medically classified as gluten-free and generally safe for the broader celiac community.
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      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable primary care provider and, when needed, a gastroenterologist or dietitian familiar with gluten-related disorders. Advocating for yourself is not unreasonable—it’s part of managing a chronic condition. If your current provider relationship isn’t working, it’s appropriate to seek care where you feel respected and properly supported.
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