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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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    • trents
      Welcome to the celiac.com community, @melthebell! I certainly would have a biopsy repeated as it has been 5 years since the first one. You mentioned he was scheduled for an endoscopy but make sure a biopsy is also done. It's possible he, like you are, is a "silent" celiac where the damage to the intestinal mucosa happens very slowly and can take years to manifest to the point of being detectable and where symptoms are minimal or absent. At 10 years old, his immune system may not be mature enough het to trigger the usual IGA responses that the IGA celiac tests are designed to detect.  I would also have genetic testing done to confirm that he has or doesn't have the potential to develop celiac disease. The genetic profile can also offer insight into the type of celiac disease a person will develop if they ever convert from latent to active. Take a look at table 2 under the section "Types of Celiac Disease" in the article found in this link: https://pmc.ncbi.nlm.nih.gov/articles/PMC9980758/  Genetic testing is available from 3rd party labs. I think you just have to send in a cheek swab sample.
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      Hello community; it's nice to have found you. I am a 42 year old biopsy confirmed celiac. I have had it since I was 18. Well managed on a gluten free diet. No idea if I have the gene (presume I do) as never tested. Diagnosed as was anaemic and had a high celiac market (can't recall which), and a positive biopsy. Asymptomatic. Given this, I regularly test my two children. My eldest is the child in question. First tested at age 5 due to slight anaemia. Everything negative except for a slightly high DGP IGG (slightly elevated at 25). Not IGA deficient. Did a biopsy with a pediatric gastro, was negative. Next test at age 8. Everything once again negative, high DGP IGG at 116 U/ml this time. Living in a country now with no celiac knowledge so decided to whack him on a gluten-free diet and see how he goes. Next test at age 9 after a year on gluten-free diet. Everything once again negative, high DGP IGG at 174 U/ml this time! On a gluten-free diet. Final test was a week ago at age 10, on continued gluten-free diet. Once again a positive DGP IGG, this time over 250 U/ml. On a gluten-free diet. what the heck is going on with my kid? We have seen a pediatric gastro via telehealth, who was equally puzzled and suggested doing a gluten challenge and an endoscopy, which we have schedule for end of April. Kid is otherwise fine. Energetic and growing well. No significant gastrointestinal symptoms. Has anyone encountered something like this before?
    • Jmartes71
      Domino's and Mountain Mike also has glutenfree pizza.However the issue is the cross contamination. Not worth a few minutes of yum yums i n the taste buds with a painful explosion later.
    • Scott Adams
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