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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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- knitty kitty replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms36Blood results
@Heatherisle, Has your daughter been checked for vitamin and mineral deficiencies? A combination of Thiamine Hydrochloride (or Benfotiamine) and B12 and Pyridoxine B6 relieves pain as well as over-the-counter pain relievers. What sort of food does she eat on the GFD? Many gluten free processed foods? -
- knitty kitty replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms8
Confused about HLA-DQ Celiac gene test result
Your doctor is incorrect! Your positive DQB1*02 is all you need to develop Celiac disease. Just having one copy is sufficient to develop Celiac. Reference: Carrier frequency of HLA-DQB1*02 allele in patients affected with celiac disease: A systematic review assessing the potential rationale of a targeted allelic genotyping as a first-line... -
- Scott Adams replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease9Pain in the right side of abdomen
I can see why she’s worried, especially with a history of ovarian cysts, but it’s also very common for healing after a celiac diagnosis to take time. Even when someone is doing their best gluten-free, it can take months for inflammation to calm down, and bloating, abdominal pressure, and even back discomfort can flare during the adjustment period. The upc... -
- Scott Adams replied to science enthusiast Christi's topic in Coping with Celiac Disease2
Sugar intolerance 10 years into gluten-free diet
Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The... -
- cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease28Insomnia help
PS... I help care for someone in their 90s, albeit part time, but have just been in hospital for a while with him and it has reminded me, even for someone in better physical shape, which I am now, thankfully, it can be very tough on one's health/sleep/mood. I think what I am trying to say is you are going through a lot all at once, it is not surprising that...
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By knitty kitty · Posted
@Heatherisle, Has your daughter been checked for vitamin and mineral deficiencies? A combination of Thiamine Hydrochloride (or Benfotiamine) and B12 and Pyridoxine B6 relieves pain as well as over-the-counter pain relievers. What sort of food does she eat on the GFD? Many gluten free processed foods? -
By knitty kitty · Posted
Your doctor is incorrect! Your positive DQB1*02 is all you need to develop Celiac disease. Just having one copy is sufficient to develop Celiac. Reference: Carrier frequency of HLA-DQB1*02 allele in patients affected with celiac disease: A systematic review assessing the potential rationale of a targeted allelic genotyping as a first-line screening "...importantly, a comparable risk of celiac disease development was present in individuals carrying a double dose of HLA-DQB1*02 alleles, no matter the paired HLA-DQA1 alleles." And... "If we could consider a mass screening looking for the carrier status of HLA-DQB1*02 only, we may identify 95% of celiac disease predisposed patients and, concomitantly, rule out (with no more than a 5% error) the lifetime risk of disease in 60%-70% of the general population: These non-predisposed individuals should never receive the serological screening, unless any consistent clinical symptoms appear at some point of the existence without any other explanation." https://pmc.ncbi.nlm.nih.gov/articles/PMC7109277/ Classical celiac disease is more frequent with a double dose of HLA-DQB1*02: A systematic review with meta-analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC6375622/ Also, the Malabsorption of Celiac can cause low B vitamins (and minerals) that are related to poor oral health. The Role of Vitamin B Complex in Periodontal Disease: A Systematic Review Examining Supplementation Outcomes, Age Differences in Children and Adults, and Aesthetic Changes https://pubmed.ncbi.nlm.nih.gov/40218924/ Best wishes for your Celiac journey! -
By Scott Adams · Posted
I can see why she’s worried, especially with a history of ovarian cysts, but it’s also very common for healing after a celiac diagnosis to take time. Even when someone is doing their best gluten-free, it can take months for inflammation to calm down, and bloating, abdominal pressure, and even back discomfort can flare during the adjustment period. The upcoming dietitian visit is a great step, since hidden gluten exposure or nutritional gaps can sometimes contribute to ongoing symptoms. That said, if the pain is persistent, worsening, or feels similar to her prior cyst symptoms, it’s reasonable to mention that to her doctor for peace of mind. It’s not uncommon for multiple things to overlap, so checking both GI and gynecologic angles can help rule things out and reduce anxiety while her body continues healing. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. -
By Scott Adams · Posted
Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: -
PS... I help care for someone in their 90s, albeit part time, but have just been in hospital for a while with him and it has reminded me, even for someone in better physical shape, which I am now, thankfully, it can be very tough on one's health/sleep/mood. I think what I am trying to say is you are going through a lot all at once, it is not surprising that you are not feeling 100 per cent. Even if we love our relative to bits, and they love us, they often can't understand that we too have lives, and need to keep our houses, families and jobs in running order. Something has to give, but it's often the carer! When an elderly loved one is resistant to change, it makes things even more exhausting. Often it has taken a crisis for me to be able to introduce the help that has actually been needed for so long. It sounds as if you are doing an amazing job but can you get any support from any carers associations or other groups where you live, which might help?
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