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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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- trents replied to QueenBorg's topic in Gluten-Free Foods, Products, Shopping & Medications5New to gluten-free
Just so you'll know, once you have been gluten-free for any length of time, it will invalidate testing for celiac disease. -
- QueenBorg replied to QueenBorg's topic in Gluten-Free Foods, Products, Shopping & Medications5New to gluten-free
Yes. I have not been tested for celiac. It took forever to get diagnosed with Fibromyalgia. lol. I have an appointment with my regular GP later this month and will convey my findings on improved symptoms and see what his thoughts are. Thank you. -
- knitty kitty replied to Grahamsnaturalworld's topic in Related Issues & Disorders4Refractory celiac disease
@Grahamsnaturalworld, It's never too late. Have you been checked for Small Intestinal Bacterial Overgrowth? SIBO can cause ongoing symptoms. Mast Cell Activation Syndrome (MCAS) and Histamine Intolerance (HIT) can also be the cause of ongoing symptoms. The AIP diet can help with these by starving out SIBO bacteria and calming the immune system... -
- Grahamsnaturalworld replied to Grahamsnaturalworld's topic in Related Issues & Disorders4Refractory celiac disease
Ok, thanks for the advice, the only advice I've had that's made sense after 21years since my slight symptoms all my life turned into nasty symptoms 21 yrs ago and around 50 gp's and specialists all chasing the symptoms and not looking for the cause, after 9 years of misery I discovered my symptoms matched celiac disease and a blood test proved anti bodies... -
- trents replied to QueenBorg's topic in Gluten-Free Foods, Products, Shopping & Medications5
New to gluten-free
Welcome to the forum, @QueenBorg! Just for the sake of clarification, your desire to avoid gluten is connected only with your dx of fibromyalgia and not celiac disease, correct?
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Just so you'll know, once you have been gluten-free for any length of time, it will invalidate testing for celiac disease.
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Yes. I have not been tested for celiac. It took forever to get diagnosed with Fibromyalgia. lol. I have an appointment with my regular GP later this month and will convey my findings on improved symptoms and see what his thoughts are. Thank you.
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By knitty kitty · Posted
@Grahamsnaturalworld, It's never too late. Have you been checked for Small Intestinal Bacterial Overgrowth? SIBO can cause ongoing symptoms. Mast Cell Activation Syndrome (MCAS) and Histamine Intolerance (HIT) can also be the cause of ongoing symptoms. The AIP diet can help with these by starving out SIBO bacteria and calming the immune system. Do you include dairy in your diet? Casein in dairy can cause an autoimmune response the same as to gluten. Have you been checked for lactose intolerance? Some people lose the ability to produce the enzyme, lactase, needed to digest lactose, the sugar in dairy because the villi where the lactase enzyme is made are damaged. AIP diet excludes dairy. Do you include grains in your diet? Gluten free alternative grains and ancient grains can be inflammatory and cause symptoms. Some people with Celiac react to corn and oats. The AIP diet excludes all grains. Lectins in grains can be inflammatory and cause symptoms. Do you eat nightshades (tomatoes, potatoes, peppers, and eggplant). This family of plants produce glycoalkaloids, chemicals that promote Leaky Gut Syndrome. The AIP diet excludes nightshades. Are you on any medications? Some medications can cause gastrointestinal symptoms. Do you take any supplements? Some herbal teas and supplements can cause digestive symptoms. Medications for diabetes, antidepressants, and other pharmaceuticals can cause digestive symptoms as side effects. Have you been checked for nutritional deficiencies? Malabsorption of essential nutrients can occur with continued symptoms. Deficiencies in Niacin, Thiamine, and other B vitamins can cause digestive symptoms. Gastrointestinal Beriberi and Pellagra are often overlooked by doctors because they are not familiar with nutritional deficiency disease symptoms. Nutritional deficiencies can worsen over time as stores inside the body are depleted. Have your doctors checked for all these? I had a horrible time getting my symptoms under control. I had to answer all these questions myself. Yes, it's frustrating and exasperating because doctors don't have to live with these symptoms everyday. Interesting reading: AGA Clinical Practice Update on Management of Refractory Celiac Disease: Expert Review https://pubmed.ncbi.nlm.nih.gov/36137844/ -
By Grahamsnaturalworld · Posted
Ok, thanks for the advice, the only advice I've had that's made sense after 21years since my slight symptoms all my life turned into nasty symptoms 21 yrs ago and around 50 gp's and specialists all chasing the symptoms and not looking for the cause, after 9 years of misery I discovered my symptoms matched celiac disease and a blood test proved anti bodies to gliadin but it was too late it has changed into r.c.d. thanks again. -
Welcome to the forum, @QueenBorg! Just for the sake of clarification, your desire to avoid gluten is connected only with your dx of fibromyalgia and not celiac disease, correct?
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