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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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    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
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