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Parents, Friends and Loved Ones of Celiacs

Discussions among parents of kids or babies with CD. Non-celiacs can discuss their experiences dealing with a friend or loved one with the disease.


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  • Posts

    • JohannesW85
      Thank you for your reply. Yep, the doctor made a mistake there for sure, but when my other doctor called she said I would wait for the referral to doctor for the gastro it can take months, and so long she thought it would be a good idea to stay gluten free.    I am really concerned about my problems tough and I don’t know if I am eating something with gluten to upset my stomach with the sulphur burps and dihareaa. I have also taken stool samples that I am going to leave on Friday this week and that’s another thing that I am worry about, if it shows something else. I mean, if am ”gluten free” why do I have problems with the stomach still? As I understand, the problem with dihareaa and other problems is when you get gluten in you by mistake for example?    I have this rashes to, going to try to upload them here.  Here is the link to the pictures of the rashes, it’s not itchy.      https://postimg.cc/gallery/p2N8kT7
    • Beverage
      Also, Vera Salt and Ava Jane's taste SO MUCH BETTER. Not sharp, and i need to use a lot less. 
    • Beverage
      I've recently researched a lot about salt lately. Celtics sea salts have minerals, which have been tested to include aluminum, cadmium, iron, lead, and microplastics. I used to use Redmond salt, but it tests as having aluminum, iron, and lead. I finally settled on 2 clean salts: Vera Salt, which you can only order from their web site. Also Ava Jane's which I got from Amazon. These are now the only 2 I use.
    • Beverage
      I had horrible reaction to lisinopril, a severe cough that kept me up all night. The cough is apparently common. I did better with irbesartan, no cough, and it controlled my BP better too. 
    • trents
      Welcome to the forum, @JohannesW85! Your physician gave you bad advice in telling you to avoid gluten until the hospital calls you. Reducing gluten intake will invalidate celiac disease blood antibody testing but it will also invalidate the gastroscopy/biopsy if there is significant time involved between removing gluten and when the procedure is scheduled. The endoscopy/biopsy serves the purpose of checking for the damage caused to the lining of the small bowel caused by the inflammation inherent in celiac disease to that section of the intestines. If you remove gluten ahead of the procedure for a period of weeks or months, there may be enough healing of the intestinal lining to prevent detection of damage. Gluten is hidden in many manufactured food products that you would never expect to find it in. It can also be found in medications, health supplements and oral hygiene products. It is easy to eat a lower gluten diet by cutting out major sources such as bread and pasta but much more difficult to achieve a truly gluten free state. There is significant learning curve involved. Current recommendations for the "gluten challenge" in preparing for celiac disease testing are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a period of at least 2 weeks. But I would certainly extend that time period to make sure the testing is valid. You might also be dealing with NCGS (Non Celiac Gluten Sensitivity) rather than Celiac disease. NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both.
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