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I Am Gluten And Dairy Free, What Am I Missing?


defeatwheat

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defeatwheat Rookie

       I have followed the gluten free diet strictly for about nine years after being diagnosed with Celiac and have been dairy free for about a year. I still get bouts 2-4 times a year where I bloat up, get constipated sometimes to a scary extreme and am exhausted and feel horrible. My gastro doctor has said every test that can be ran has been ran. I take Chlord to help with stomach spasms and Omeprozol to help with acid reflux. I stay away from things like tomatoes, corn, popcorn and nuts - anything that I think has been an issue I eliminate. I think it must be food related because nothing has shown on CT scans or x-rays or even a colonoscopy. Any ideas on medicine or diet?

      Also when my stomach is out of whack it affects me psychologically. I have tried several antidepressants/anxiety medicines but all seem to irritate my system. I take a herbal supplement St Johns Worts, that helps some.


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Juliebove Rising Star

Omeprazol can really do a number on your stomach!  It slows digestion.  That could cause constipation.

dilettantesteph Collaborator

You need to look at what you are ingesting when these events happen.  It could be another food intolerance, or it could be cc in your diet.  Does it happen at a certain time of year?  When you go to a certain restaurant?  During wheat harvest?  After you eat a certain brand of chips?  

 

What helps me keep track is to keep a food/symptom journal.  I keep my diet simple and with mainly produce and unprocessed meats.  I try to make only one change per week so that I can easily determine what is the cause of any problems that I have.

 

I hope that helps and you feel better soon.  I also get psychological issues from glutening.  It can be difficult.

neal Rookie

What is cc in a diet? 

notme Experienced

What is cc in a diet? 

cross-contamination :)  when all your ingredients are gluten-free and then it gets messed up by (croutons on a salad, cutting gluten-free sandwich on gluteny cutting board, cooking in a contaminated whatever, etc)  restaurants are good at cc lolz

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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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