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    • trents
      Welcome to the forum, @Julianne101! Your experience is exceedingly common in the celiac community. First, regardless of how gluten free the food was in the restaurant experience you described actually started out to be, you have no idea what measures were taken in the cooking, preparation and handling to prevent cross contamination. Sounds like to me you are either getting gluten from some unexpected source or you have developed additional food intolerances. It is very common in the celiac community to be intolerant to dairy (CMP or Cow's Milk Protein) or to oats (even gluten free oats, the protein avenin) which have proteins similar in structure to gluten and can be cross reactors.
    • Julianne101
      I'm new to this forum.  My sister was diagnosed with Celiac disease 20 years ago right around the time my 2 year-old daughter developed a swollen belly, prolapsed bowell (constipated), intense sweating, etc.  So, my sister suggested maybe it might have something to do with gluten.  My daughter's gastroenterologist said he didn't want to put her through an endoscopy (her blood test was negative) but I was welcome to try the strict gluten-free diet if I felt like it.   I did, and sure enough, withing a couple of days all of her symptoms disappeared.  I was shocked the first time I got her up from her nap and she wasn't literally drenched in sweat.  So, I decided to try the strict gluten-free diet too.  I was very sick with my pregnancy for my daughter and never really felt good since, lots of GI issues (gas and bloating primarily). I found that my symptoms also disappeared on the gluten-free diet.  So, I have been gluten-free ever since.  I avoid milk (except for cheese) because it causes gas and bloating.  Fast foward 19 years to just 1 year ago.  I started taking a new probiotic to try to ease menopause symptoms.  The next day I had sever diarrhea.  I thought that was weird, so I stopped taking the probiotic and started to feel better, but then the diarrhea came back a day or two later and remained on and off every few days for three months! It was nothing like food poisoning or the GI bug.   I got tested for parasites and other infectious diseases but everything came back negative.  So, I thought maybe I was developing a more severe form of gluten intolerance.  I also found out that right around the same time that I got the diarrhea, my brand of oat milk had changed their formula and was no longer using gluten-free oats, so maybe that was the cause. AFter three months, the diarrhea finally cleared up and I became much more vigilent about gluten contamination.  A couple months later I ate out at a restaurant.  The meal was labeled gluten-free, I clarified with the waitress, but the next day the severe diarrhea was back and this time it lasted two months but finally cleared up!  A couple months later, and I am cuurently in my third episode of diarrhea, and I have no idea what may have caused it. I've been to a Gastroenterologist who has tested me for everything under the sun and finds nothing wrong with me.  My colonoscopy is perfect, endoscopy perfect, IgA 184 (normal range), and several other tests all normal except for high eosinophils.  I've lost 20 pounds and struggle with dehydration.  I'm very curious, has anyone else with Celiac disease ever experienced anything like this?  Can people have a gluten contamination reaction last for 2-3 months like this?  The NP I saw in the GI Clinic claims my diarrhea has nothing to do with gluten, but I'm not so sure.  I've asked for a referrral to a specialist.  
    • Wheatwacked
      Growing up I wondered why restaurants always put parsley on the plates when no one ate it.  ten grams of parsley sprigs have Vitamin K (phylloquinone)164µg. The RDA of vitamin K is 19+ years male: 120 mcg  female: 90 mcg. Maybe your doctor would agree instead of the pills? The USDA Food Data Centra is a good source of nutrition. USDA Food Data Parsley, fresh I'd be interested in your test results vis a vis the Celiac vitamins.
    • Scott Adams
      If you are doing great on a gluten-free diet and see no reason to get a formal diagnosis of celiac disease, then it's perfectly fine for you to just stay gluten-free.  In the Europe the current protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children!    
    • trents
      Well, you have some decisions to make. If you want an endoscopy, you must start the "gluten challenge" and daily eat the gluten equivalent of 4-6 slices of bread for several weeks.
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