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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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Recent Activity
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- Heatherisle replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms24Blood results
Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose i... -
- DAR girl posted a topic in Gluten-Free Foods, Products, Shopping & Medications0Celiac and allergic to common subs and adds in prepared foods
Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. -
- Scott Adams replied to Jmartes71's topic in Doctors1Disregarded
I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have... -
- cristiana commented on Scott Adams's article in Oats: Are They Gluten-Free?7Gluten Contamination Common in European Oats and Gluten-Free Oat Only Products (+Video)
I was thinking similar thoughts. Names/brands would be very helpful.- celiac disease
- cross-contamination
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- Oldturdle replied to Treen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms17Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history
It is just so sad that health care in the United States has come to this. Health insurance should be available to everyone, not just the healthy or the rich. My heart goes out to you. I would not hesitate to have the test and pay for it myself. My big concern would be how you could keep the results truly private. I am sure that ultimately, you could...- 1
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By Heatherisle · Posted
Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight -
Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats.
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By Scott Adams · Posted
I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. -
It is just so sad that health care in the United States has come to this. Health insurance should be available to everyone, not just the healthy or the rich. My heart goes out to you. I would not hesitate to have the test and pay for it myself. My big concern would be how you could keep the results truly private. I am sure that ultimately, you could not. A.I. is getting more and more pervasive, and all data is available somewhere. I don't know if you could give a fake name, or pay for your test with cash. I certainly would not disclose any positive results on a private insurance application. As I understand it, for an official diagnosis, an MD needs to review your labs and make the call. If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten. Hang in there, though. Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns. You will even be able to "come out of the closet" about being Celiac!
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Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
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