-
Welcome to Celiac.com!
You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.
-
Celiac.com Sponsor (A1):
Celiac.com Sponsor (A1-M):
-
Get Celiac.com Updates:Support Our Content
-
Get Celiac.com Updates:Support Celiac.com:
-
Celiac.com Sponsor (A17):
Celiac.com Sponsor (A17):
Celiac.com Sponsors (A17-M):
-
Recent Activity
-
- FayeBr replied to FayeBr's topic in Coping with Celiac Disease4Major Glutening
And just as an afterthought, I would love to ask a question that may sound strange. But when I have symptoms, I never have more than one at one time. The inflammation seems to move around my body. Such as a migraine and then it moves to my throat or earache. Brain fog seems to be consistent but it’s almost like I picture the bad cells travelling through m... -
- cristiana replied to cristiana's topic in Related Issues & Disorders7Has anyone ever had Low Ferritin with Elevated MCHC levels?
@knitty kitty I saw my consultant yesterday. He is not worried about my high MCHC levels, he said he was more interested in my MCV levels and they are fine.. The Holocolobim test apparently is going to take time to come back - the report says 17th October which I think isn't actually the true date, I think it's just a random date thrown out by... -
- Rebeccaj posted a topic in Dermatitis Herpetiformis0ointment .
Hey, has anyone got a really good brand name of hand ointment from hives eczema or just good relief of being gluttoned . -
- FayeBr replied to FayeBr's topic in Coping with Celiac Disease4
Major Glutening
Thank you for your reassurance. It can sometimes feel very lonely with this disease and a constant battle. The product was Gaviscon Advance Aniseed which I was taking every day due to having gastritis from my gluten exposure. It states on the leaflet that it does not contain gluten. So I thought I was safe. But my symptoms were getting worse each day, causing... -
- Scott Adams replied to lehum's topic in Super Sensitive People14.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories
Thank you so much for sharing your story with such honesty and detail. Please know that you are not alone in this struggle, and your experience, while incredibly challenging, is more common than those "gluten-free miracle" stories on social media would have you believe. It's completely understandable to feel isolated, but your diligence in tracking your symptoms...
-
-
Celiac.com Sponsor (A19):
-
Member Statistics
-
Celiac.com Sponsor (A20):
-
Forum Statistics
-
Total Topics121.4k
-
Total Posts1m
-
-
Celiac.com Sponsor (A22):
-
Celiac.com Sponsor (A21):
-
Upcoming Events
-
Posts
-
And just as an afterthought, I would love to ask a question that may sound strange. But when I have symptoms, I never have more than one at one time. The inflammation seems to move around my body. Such as a migraine and then it moves to my throat or earache. Brain fog seems to be consistent but it’s almost like I picture the bad cells travelling through my body and stopping off along the way. For instance, this error was predominantly in my stomach with gastritis and also bloating, abdominal pain and GI symptoms for a long while. And then as I stopped the source and started healing, my gastritis has now started to get better (certainly not fully) but all of a sudden the other symptoms I usually suffer from have bombarded me. It’s like the inflammation has started to move on. Maybe I’m just imagining all this. Very possible. But just my experience. I have nightmares about gluten now. The fear is real! -
@knitty kitty I saw my consultant yesterday. He is not worried about my high MCHC levels, he said he was more interested in my MCV levels and they are fine.. The Holocolobim test apparently is going to take time to come back - the report says 17th October which I think isn't actually the true date, I think it's just a random date thrown out by the labs to say 'Don't hold your breath!'. He mentioned B12 injections if the levels are low which I would really like as I've always felt in other countries my levels, hovering around 250, would be treated as a deficiency. Doesn't help that currently I'm not sleeping very well at night, I'm so tired all the time, I'm hoping it will help me feel more energetic. (Mind you, put me in front of the TV and I'm asleep in minutes!) When taking thiamin, what sort off food source or supplement would you recommend?
-
Hey, has anyone got a really good brand name of hand ointment from hives eczema or just good relief of being gluttoned .
-
Thank you for your reassurance. It can sometimes feel very lonely with this disease and a constant battle. The product was Gaviscon Advance Aniseed which I was taking every day due to having gastritis from my gluten exposure. It states on the leaflet that it does not contain gluten. So I thought I was safe. But my symptoms were getting worse each day, causing me to take more gaviscon. I was in a spiral without knowing it. I knew that nothing else had changed for me other than the product. I emailed the company and was informed that although there were no gluten ingredients, they don’t test for gluten and can’t guarantee that it doesn’t contain gluten from the manufacturing process. I stopped it immediately, which was difficult as my gastritis was awful. My symptoms began to improve slightly as they do each day. Yesterday my reflux type symptoms were less too. But it is a slow road to recovery this time as I have said. I have been ill now for 2 months and 2 and a half weeks into recovery. I am in the UK and find it hard to understand how medication can hide ingredients nowadays, with all allergies and intolerances. I react to soy too like gluten and I ask my gp for meds that are soy and gluten free. They then say to ask the pharmacist. I ask the pharmacist who tells me that it is for me to read the ingredients on the information leaflet. Where do you go from there? Also I ask the gp for a prescription to pay and get compounded meds privately and they refuse. I don’t understand why the pharmaceutical industry are not made to list the top allergens and all ingredients simply and transparently. But thank you again for your advice. I feel like I have lost the last few months. Literally too with the brain fog and memory loss. You’re so right about the feeling of helplessness. Onwards and upwards!
-
By Scott Adams · Posted
Thank you so much for sharing your story with such honesty and detail. Please know that you are not alone in this struggle, and your experience, while incredibly challenging, is more common than those "gluten-free miracle" stories on social media would have you believe. It's completely understandable to feel isolated, but your diligence in tracking your symptoms, following up with scopes, and working with professionals is truly commendable. It's encouraging that your villi have healed, which proves you are successfully avoiding the large-scale damage of gluten; however, it's clear your immune system remains in a heightened state of alert. Your intense reaction to the quinoa flakes is a classic sign of this hypersensitivity. Given the reputable brand, it's highly unlikely to be gluten cross-contact. It's much more probable that you are reacting to the quinoa itself—perhaps due to a separate intolerance, its saponin content (which can irritate some sensitive guts), or cross-reactivity, where your immune system mistakes similar protein structures for gluten. Your nutritionist's plan for a simplified, grain-free (except rice) baseline is an excellent strategy. The goal is to calm your nervous and immune systems down completely before slowly testing individual foods, like avocado or even quinoa in its whole form, to identify the true triggers. Remember, healing from years of damage takes time, and setbacks are part of the journey. Be kind to yourself; you are doing everything right by continuing to investigate and advocate for your health. Your path to feeling better may be more complex, but it is absolutely valid.
-
Recommended Posts
Archived
This topic is now archived and is closed to further replies.