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Coping with Celiac Disease
Share stories, techniques, and information to help others deal with the disease and the gluten-free diet.
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Recent Activity
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- Scott Adams replied to JD-FLA's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease1
Anyone understand genetic testing
Your genetic test results confirm that you carry the highest-risk markers for celiac disease, specifically the HLA-DQ2 haplotype (while being negative for HLA-DQ8). The fact that both HLA-DQA1*05 and HLA-DQB1*0201 appear twice means you inherited identical copies from each parent, making you homozygous for these genes. This double dose of the DQ2.5 haplotype... -
- Scott Adams replied to KimMS's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease1
Helping child go strict gluten-free and concerns about growth/height
It sounds like you and your daughter are navigating celiac disease with a lot of care and dedication, and it’s wonderful that you’re prioritizing her health and growth during this critical time. Since her antibody levels and growth have plateaued, tightening up her diet by avoiding eating out (except at dedicated gluten-free places) is a smart move—even ... -
- Scott Adams replied to McNish's topic in Gluten-Free Foods, Products, Shopping & Medications2
Illinois Celiac Training- Huge Win!
This is good news--I hope we can get this done on a national level! -
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- Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications3
Juice shots? Anti inflammatory
I use a blender and have made various juice recipes over the years.
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By Scott Adams · Posted
Your genetic test results confirm that you carry the highest-risk markers for celiac disease, specifically the HLA-DQ2 haplotype (while being negative for HLA-DQ8). The fact that both HLA-DQA1*05 and HLA-DQB1*0201 appear twice means you inherited identical copies from each parent, making you homozygous for these genes. This double dose of the DQ2.5 haplotype is significant because it indicates an even stronger genetic predisposition to celiac disease compared to those who only inherit one copy. Research suggests that people with this homozygous pattern may have a higher likelihood of developing the disease, potentially more severe immune responses to gluten, and a stronger association with dermatitis herpetiformis (which aligns with your diagnosis). While this genetic profile doesn’t guarantee worse symptoms, it does reinforce why strict gluten avoidance is critical for you. Since you’re already diagnosed, the main takeaway is that your results explain your biological susceptibility—no further genetic counseling is needed unless you have family planning questions. The repeating variants simply mean both parents passed you the same high-risk alleles, which is why your body reacts so strongly to gluten. Ultimately, your diagnosis and management remain the same, but this insight helps underscore the importance of lifelong dietary diligence. -
By Scott Adams · Posted
It sounds like you and your daughter are navigating celiac disease with a lot of care and dedication, and it’s wonderful that you’re prioritizing her health and growth during this critical time. Since her antibody levels and growth have plateaued, tightening up her diet by avoiding eating out (except at dedicated gluten-free places) is a smart move—even if it’s challenging socially. Many parents of celiac kids report significant growth spurts once gluten exposure is minimized, so there’s hope she’ll catch up if her levels improve. As for the future, while her growth window closing may reduce some risks, celiac is lifelong, and staying as strict as possible will likely always be best to avoid long-term complications, even if occasional cautious outings become manageable later. Navigating this with a teenager is tough, especially with spontaneous social events. For unplanned outings, keeping safe snacks (like GF protein bars, nuts, or fruit) in her bag or your car can help. To boost nutrition, try sneaking in variety where you can—like lentil or chickpea pasta instead of rice pasta, or adding veggies and proteins to her favorite dishes. Involving her in meal planning might help with pickiness, and connecting with other celiac families or support groups could provide social strategies and emotional support. It’s exhausting, but you’re doing an amazing job—your efforts now will set her up for a healthier future. Hang in there! -
By Scott Adams · Posted
This is good news--I hope we can get this done on a national level! -
By Scott Adams · Posted
I use a blender and have made various juice recipes over the years. -
By captaincrab55 · Posted
Pharmacies personnel need training to prevent cross contamination.
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