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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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    • Dr. Gunn
      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual. 
    • trents
      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
    • Dr. Gunn
      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
    • Scott Adams
      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
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