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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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My daughter is celiac, she had the Moderna vaccines dose and now, she has Chronic Pericarditis. She is almost twenty five year old. 1 2
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Recent Activity
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- jamiet06 replied to jamiet06's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5Duodenum biopsy result confusion
Thank you Knitty kitty, no I haven't thought about that. I just assumed that because my biopsy showed no lymphocytosis, celiacs was off the table. Is it possible to have no lymphocytosis and still have celiacs? -
- knitty kitty replied to jamiet06's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5Duodenum biopsy result confusion
@jamiet06, Have you thought about getting a genetic test done? You have to have genes for Celiac Disease to develop. If you don't have any of the commonly known Celiac genes, you can look for another diagnosis. Genes don't change. You don't have to do a gluten challenge to test for genetic markers of Celiac Disease. -
- knitty kitty replied to Ginger38's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms8
Confused About Results
Yes, @Ginger38, there are other genes for Celiac besides the two most common HLA DQ 2 and HLA DQ 8. There are DQ 7 and DQ 9 to name a couple. There are others. I understand how frustrating the diagnosis journey can be. I had a difficult time getting diagnosed, too. But you're through that now! Focus on your recovery and healing. Try the... -
- Ginger38 replied to Ginger38's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms8Confused About Results
Thank you! This is helpful and validating, which is nice. I am so tired of gastrointestinal issues and feeling poorly. Obviously my immune system is freaking out and seeing gluten as a foreign invader… and I feel like I’m just trying to doctor myself all the time but I did wonder if it was all indicative of pre celiac or something like that. I haven’t g... -
- Ginger38 replied to Ginger38's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms8
Confused About Results
Hi! Thank you, this is the most validating information I have had shared with me. I wondered if all this was indicative of pre-celiac or just celiac that hasn’t caused damage. It’s been a long road with all this and I am burnt out on dealing with it all. And I am beyond tired of gastrointestinal issues and feeling poorly. I have had major improvements on ...
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Thank you Knitty kitty, no I haven't thought about that. I just assumed that because my biopsy showed no lymphocytosis, celiacs was off the table. Is it possible to have no lymphocytosis and still have celiacs?
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By knitty kitty · Posted
@jamiet06, Have you thought about getting a genetic test done? You have to have genes for Celiac Disease to develop. If you don't have any of the commonly known Celiac genes, you can look for another diagnosis. Genes don't change. You don't have to do a gluten challenge to test for genetic markers of Celiac Disease. -
By knitty kitty · Posted
Yes, @Ginger38, there are other genes for Celiac besides the two most common HLA DQ 2 and HLA DQ 8. There are DQ 7 and DQ 9 to name a couple. There are others. I understand how frustrating the diagnosis journey can be. I had a difficult time getting diagnosed, too. But you're through that now! Focus on your recovery and healing. Try the AIP diet to help calm your system down. Try supplementing with a B Complex to boost your absorption and to help heal and repair. Benfotiamine has been shown to promote intestinal healing. Benfotiamine helps keep SIBO in check and so reduce bloating. Keep us posted on your progress! Best wishes! -
Thank you! This is helpful and validating, which is nice. I am so tired of gastrointestinal issues and feeling poorly. Obviously my immune system is freaking out and seeing gluten as a foreign invader… and I feel like I’m just trying to doctor myself all the time but I did wonder if it was all indicative of pre celiac or something like that. I haven’t gotten straightened out mentally or physically since the 8 week gluten challenge. My stomach is a mess and I’m over it
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Hi! Thank you, this is the most validating information I have had shared with me. I wondered if all this was indicative of pre-celiac or just celiac that hasn’t caused damage. It’s been a long road with all this and I am burnt out on dealing with it all. And I am beyond tired of gastrointestinal issues and feeling poorly. I have had major improvements on a gluten free diet in the past and the antibodies decrease as well. Around the area where I live they don’t diagnose celiac without a positive biopsy. I asked my doc why I would have antibodies if it’s not celiac and he didn’t really have an Answer for that, which was frustrating. They only test for 2 genes, the most common I think. Aren’t there more than just 2?
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