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Post Diagnosis, Recovery & Treatment of Celiac Disease
Discussions related to the recovery process after you've been diagnosed.
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Diagnosed only 3 days ago with coeliac disease :-( Gliodan antibodies high and duodenal biopsies showed ‘subtotal villous atrophy’. Have done abrupt withdrawal from gluten and I honestly feel worse now off gluten than I did on it :-( 1 2
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Recent Activity
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- ShRa posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms0Son recently got diagnosed with Celiac disease
My son, 13 had been complaining about the tummy aches since past few days. He lost quite a bit of weight in past few months. We thought it's because he has been playing soccer alot recently and also is not much intereseted in junk these days. His doctor ordered Celiac panel with a few other bloodwork. Here are the results: TTG Ab,IgA | Normal value... -
- Scott Adams replied to Brianne03's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1Daughter recently diagnosed with Celiac and I am questioning my results...
First off, I’m sorry to hear about the challenges you’ve been facing, both with your recent celiac concerns and the dermatitis you've been dealing with. It’s clear you’ve put in a lot of effort to figure this out, and it’s frustrating to still have lingering questions. Regarding your TTG-IgA result of 11.6 U/mL, you’re correct that many labs and celiac ... -
- BertoleAmur replied to Rosyjo11's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5Has anyone found Ozempic affected their symptoms?
I’ve been gluten-free for a while too, and I know how frustrating it can be when your body reacts unexpectedly. I haven’t personally experienced what you’re describing with Ozempic, but I did have a situation where I took a break from certain supplements and noticed my body felt a lot better. -
- Scott Adams replied to CeliacChica's topic in Related Issues & Disorders28
Muscle Twitching
Two of our moderators @knitty kitty and @Wheatwacked know a lot more about nutrients and may be able to offer some more help, so hopefully they will chime in here.- 1
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- aperlo34 replied to CeliacChica's topic in Related Issues & Disorders28Muscle Twitching
Hi Scott, thanks for the reply. I’m currently taking 3000IU vitamin D3 centrum multivitamin 500mg vitamin C 1000mcg B12 naturemade softgel Omega 3 (for dry eyes) My latest labs for vitamins were D - 43.6 (range 30-100) B12 - 406 (range 232-1245) Folate - 11.4 (range >3.0) ferritin - 117 (30...
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0December 11, 2024 12:00 AM
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Posts
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My son, 13 had been complaining about the tummy aches since past few days. He lost quite a bit of weight in past few months. We thought it's because he has been playing soccer alot recently and also is not much intereseted in junk these days. His doctor ordered Celiac panel with a few other bloodwork. Here are the results: TTG Ab,IgA | Normal value: <15.0 u/mL | Value: 104.2 IgA is normal Gliadin DGP Ab IgA is normal His PCP told us that he need to stop eating gluten right away as he has been diagnosed with celiac disease and has been now referred to specialist for further advise. I'm trying to understand gluten free diet and this disease further. Any guidance on how to proceed now and what to expect would be appreciated
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By Scott Adams · Posted
First off, I’m sorry to hear about the challenges you’ve been facing, both with your recent celiac concerns and the dermatitis you've been dealing with. It’s clear you’ve put in a lot of effort to figure this out, and it’s frustrating to still have lingering questions. Regarding your TTG-IgA result of 11.6 U/mL, you’re correct that many labs and celiac experts consider values above 10 to be indicative of possible celiac disease. However, interpretation can vary depending on the lab and the individual. It’s worth noting that slightly elevated levels can also sometimes occur with other autoimmune conditions, including Hashimoto’s thyroiditis. However, since you already have Hashimoto's and a strong family history of celiac (your daughter’s diagnosis), the most likely explanation is that you also have celiac disease. Here are a few steps you might consider to gain peace of mind: Consult a Gastroenterologist: They have more expertise in celiac diagnostics than a general PCP. They may recommend additional tests like an EMA (endomysial antibody) test or even genetic testing to confirm your predisposition further. Consider a Small Intestinal Biopsy: If there’s uncertainty, a biopsy remains the gold standard for celiac diagnosis. It can provide clarity, especially since your TTG-IgA is borderline. Monitor Symptoms on a Gluten-Free Diet: Since you already have another autoimmune condition and a chronic rash (which could resemble dermatitis herpetiformis, a skin manifestation of celiac disease), some doctors might suggest trying a strict gluten-free diet for a few months under supervision. If you notice a marked improvement, it might be telling. Keep in mind that if you go on a gluten-free diet before an endoscopy/biopsy, you will need to do a gluten challenge and eat lots of gluten daily for at least two weeks before the biopsy. As for your genetic results from 23andMe, having two copies of a celiac-associated gene (HLA-DQ2 or DQ8) does increase your risk of developing celiac disease considerably. However, about 30-40% of the general population carries these genes, and only a small percentage actually develop the disease. The genetic predisposition combined with your elevated TTG-IgA and symptoms could justify further investigation. Lastly, regarding your chronic "dermatitis," it might be worth bringing up the possibility of dermatitis herpetiformis to a dermatologist familiar with celiac disease. This condition is often misdiagnosed as eczema or another dermatitis type and may not respond well to typical creams. A skin biopsy taken near (not on) an affected area can help diagnose it. -
By BertoleAmur · Posted
I’ve been gluten-free for a while too, and I know how frustrating it can be when your body reacts unexpectedly. I haven’t personally experienced what you’re describing with Ozempic, but I did have a situation where I took a break from certain supplements and noticed my body felt a lot better. -
By Scott Adams · Posted
Two of our moderators @knitty kitty and @Wheatwacked know a lot more about nutrients and may be able to offer some more help, so hopefully they will chime in here. -
Hi Scott, thanks for the reply. I’m currently taking 3000IU vitamin D3 centrum multivitamin 500mg vitamin C 1000mcg B12 naturemade softgel Omega 3 (for dry eyes) My latest labs for vitamins were D - 43.6 (range 30-100) B12 - 406 (range 232-1245) Folate - 11.4 (range >3.0) ferritin - 117 (30-400) magnesium - 2.3 (1.6-2.3) Calcium - 9.9 (8.7-10.2) I am 29 and really struggling with this emotionally, I was caught by surprise 2.5months ago with this dx and pretty much no symptoms that I really knew of besides low ferritin. When I first met with the GI doctor in July and he ordered the endoscopy/colonoscopy, that was around when the twitching started. I’m unsure if it’s the anxiety of it all (I have been consistently freaking out since the scopes were ordered, losing sleep, obsessively googling etc.) or if it’s celiac related. I’m horrified that I might have something else wrong with me. Additionally, I’ve been getting some mixed opinions - dietician told me to stop the additional b12 because my multi had b12, but I see online that some people think b12 levels should be well over 500. Some other things that I’ve experienced since I went gluten free are more “sinus” headaches, facial pressure, some cramping in my left side (could be postural problems I’m dealing with) and dry eyes - my eye doctor has me on some eyes drops that really help and this is a work in progress. And no my mouth isn’t dry too 😅 I’m absolutely beside myself with fear of other AI diseases and have no one I can really turn to (besides online) that has dealt with this. I have no idea what’s in my mind and what is a real symptom anymore because I’m so hyper aware of every sensation in my body! Thank you so much in advance for any input/guidance.
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