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- MCAyr replied to MCAyr's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2Hernia symptoms after gluten exposure
Appreciate the comment thanks yes seems my doc wants to go down the skin biopsy route for dermatitis herpetiformis as don't need to be on gluten-free apparently but we shall see what they say. -
- trents replied to MCAyr's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2Hernia symptoms after gluten exposure
Welcome to the community @MCAyr! One thing you need to know is that in order for celiac disease diagnostic testing to be valid, you must not have been on a gluten-free diet already. The first stage of celiac disease testing involves looking for the blood antibodies that are produced by the inflammation in the small bowel lining. Once you eliminate gluten... -
- MCAyr posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2
Hernia symptoms after gluten exposure
Hi currently being investigated for celiac; suspected dermatitis herpetiformis, low calcium and vit D, stomach discomfort and 2 episodes of awful stomach pain (docs think maybe triggered by pregnancy) Went gluten-free for 5 weeks was feeling great then last week accidentally had some in a sweet! Followed by 2 days of absolute hell and excruciating stomach... -
- Scott Adams replied to Jane878's topic in Coping with Celiac Disease1My mo,ther married a bread making when I was 4
Your story is a powerful and heartbreaking testament to the profound damage that can be caused by undiagnosed celiac disease and the profound pain of not being believed or supported by family. It is sadly a common narrative within the celiac community to have suffered for years, even decades, while autoimmune conditions stack up, all while being dismissed...- 2nd autoimmune disorder at 12
- auto-immune disorders at 5
- (and 3 more)
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- Scott Adams replied to JForman's topic in Coping with Celiac Disease1
7yo struggling!
It's incredibly tough to watch a young child grapple with the frustration and sense of deprivation that comes with a restrictive diet, and your empathy for her is the first and most important step. At seven, children are deeply focused on fairness, and her feelings are completely valid. To support her mental health, shift the narrative from "missing out"...- 2
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Appreciate the comment thanks yes seems my doc wants to go down the skin biopsy route for dermatitis herpetiformis as don't need to be on gluten-free apparently but we shall see what they say.
-
Welcome to the community @MCAyr! One thing you need to know is that in order for celiac disease diagnostic testing to be valid, you must not have been on a gluten-free diet already. The first stage of celiac disease testing involves looking for the blood antibodies that are produced by the inflammation in the small bowel lining. Once you eliminate gluten, the antibodies begin to disappear and it takes weeks or months of being back on normal amounts of gluten for them to build up to detectable levels again.
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Hi currently being investigated for celiac; suspected dermatitis herpetiformis, low calcium and vit D, stomach discomfort and 2 episodes of awful stomach pain (docs think maybe triggered by pregnancy) Went gluten-free for 5 weeks was feeling great then last week accidentally had some in a sweet! Followed by 2 days of absolute hell and excruciating stomach pain and cramping below right of belly button. Since then the really bad pain has gone, but I've had sore to touch above my belly button and think I can feel a lump, was painful for a couple of days to point I couldn't sleep on sides. Docs palpated few days before I could feel lump, and felt nothing. Anyone had a hernia they didn't know about until their gluten reaction inflamed it? Or is this just another lovely gluten sensitivity symptom? Many thanks
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By Scott Adams · Posted
Your story is a powerful and heartbreaking testament to the profound damage that can be caused by undiagnosed celiac disease and the profound pain of not being believed or supported by family. It is sadly a common narrative within the celiac community to have suffered for years, even decades, while autoimmune conditions stack up, all while being dismissed. To answer your core question: yes, living in a environment with significant, constant gluten exposure, especially from airborne flour in a home where milling and baking occurred, would have created a perpetual state of autoimmune activation for you, even beyond the direct ingestion. This chronic exposure is strongly linked to the development and exacerbation of the very autoimmune disorders you describe—Migraines, Meniere's, Hashimoto's, and more. Your body was under constant attack, and the lack of care and understanding from your family compound that trauma significantly. It is not your fault. Many in the community share similar stories of a cascade of illnesses finally explained by a celiac diagnosis, often coming too late to prevent irreversible damage. While I cannot speak to the legal aspects of your inheritance situation, your experience with the medical neglect and the lasting impact of your childhood environment is deeply valid and shared by others who understand this unique type of suffering. Thank you for having the courage to share your truth. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together: -
By Scott Adams · Posted
It's incredibly tough to watch a young child grapple with the frustration and sense of deprivation that comes with a restrictive diet, and your empathy for her is the first and most important step. At seven, children are deeply focused on fairness, and her feelings are completely valid. To support her mental health, shift the narrative from "missing out" to "empowered choice." Instead of "you can't have that," use language like "we choose these safe foods so your tummy feels happy and strong." Involve her directly in her own care; let her be the "Gluten-Free Detective" at the grocery store, picking out exciting new treats, or make her the head chef in baking a special dessert that everyone gets to enjoy. When eating out, empower her by having her call the restaurant ahead to ask about safe options (with your help), making her feel in control rather than a passive victim. Acknowledge her feelings—"It's okay to feel sad that you can't have the roll, I sometimes feel that way too"—and then immediately pivot to a positive action, like unwrapping the special brownie you brought just for her. This combination of validation, involvement, and reframing turns a limitation into a shared family challenge where she feels supported, capable, and loved.
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