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Rebecca Clayton

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by Rebecca Clayton

  1. Rebecca Clayton

    Just to say I was diagnosed with celiac disease in 2018 and refractory celiac in 2021. Also diagnosed microscopic colitis 2018. In 2024 routine endoscopy found some villi present - Marsh? 1 I think. No presence of microscopic colitis. Diarrhoea continues as has been the case for 8 years, so good news and bad news, if anyone is interested!! So all not lost, if one is diagnosed with refractory celiac - I recall mine was type 1 - the lesser of two evils. 

  2. Rebecca Clayton
    Thanks again. I'll have to show above to the Johannesburg doc. Could you email this info to me or ask Jeff Adams to do so please??s.clayton88@yahoo.co.uk Many thanks!
  3. Rebecca Clayton
    Thanks for info knitty kitty! I live in Zimbabwe and no doctors here totally au fait with celiac disease let alone RCD. I'm seeing a gastroenterologist in Johannesburg in a few weeks just a check up and will mention your suggestion. On another note. October 2023 a CT Scan in Johannesburg revealed blood clots on lung and near liver. I've recently read...
  4. Rebecca Clayton
    If this EATL is Lymphoma (?) then I understand that those with TYPE 2 REFRACTORY CELIAC DISEASE are at most risk. RCD is rare AND TYPE 2 is even more rare. I was diagnosed with TYPE 1 RCD at one of only two hospitals in the UK that can do this test. (by biopsies from the duodenum and possibly bloods?!)
  5. Rebecca Clayton
    Have type 1 refractory celiac disease. Had a stent fitted to artery to right leg late last year due to plaque and blood clots (fun.) Had covid Dec 2022 and Oct 2023 (not vaccinated) They say BOTH can cause blood clots. Anyway am on a statin and blood thinners and due for blood tests and CT scan in few weeks to see if meds are working - despite (obvious?)...
  6. Rebecca Clayton
    Diagnosed celiac disease around 2018 and refractory celiac disease 2020. Never had symptoms of vomiting or pain. Just had diarrhoea constantly and more frequent when ingest gluten in error. Thank God and hopefully never get that symptoms.
  7. Rebecca Clayton
    Pity not many articles on type 1 or 2 refractory celiac disease but I guess one can read into articles that refractory celiac can be regarded as "untreated celiac disease." So in effect, a pretty serious condition over and above ordinary celiac.
  8. Rebecca Clayton
    I wonder how this potential treatment would work with refractory celiac disease..... or wouldn't it?
  9. Rebecca Clayton
    Hi trents. Nope, sorry can't. I'm a wolly with these forums etc. The post was headed 'MALIGNANT CANCERS ARE A HIDDEN DANGER FOR CELIACS.' Posted by Jefferson Adams on celiac.com on 1st May. Apologies, there was no mention of melanomas as I'd thought but does mention other cancers in the post. Hope you find it!
  10. Rebecca Clayton
  11. Rebecca Clayton
    Thanks kitty kitty. Will try and get vitamin and mineral checks... all these diets sound great but have collagenous microscopic colitis as well. Such fun. Can't tolerate many healthy veg - greens, butternut. They say potatoes are off the menu BUT there's blow all else I can eat. Rice can be an issue as there's probably instances of cross contamination in...
  12. Rebecca Clayton
    Hmmm.... not sure how to do that on this forum thing! Saw it days ago on this celiac.com site. Maybe Scott can help?
  13. Rebecca Clayton
    Hi. I was diagnosed Sept 2021 with type 1 refractory celiac disease. This means that although I may be gluten free, the villi can't heal and the body continues to attack itself causing continuous inflammation. After your recent article about increased risk of melanoma cancers with celiac disease, does my condition make one even more susceptible to these...
  14. Rebecca Clayton
    Scott, on this chat group, has mentioned that my 4 eggs a day might be contributing to the D. I've been off eggs for over a week now - and the noisy gut and frequency to bathroom have definitely diminished. Thanks Scott! I've been taking 1 tbsp type 1 bovine collagen (powder in a mashed banana daily) This may be helping too - some healing to the gut lining...
  15. Rebecca Clayton
    Hi Posterboy. My, that was some reading in your links! Thank you. I too suspected SIBO a few years ago. During one of 6 endoscopies I had over 3 years, they checked for bacteria etc and found nothing ... other than totally fattened villi - even on a gluten-free diet for a few years - hence diagnosis of type 1 refractory celiac disease (which included blood...
  16. Rebecca Clayton
    Thanks knitty kitty for your suggestions. Appreciated!
  17. Rebecca Clayton
    Thanks again Scott. I've often wondered if my 4 chicken eggs a day is contributing to the D. Very little gluten-free foods where I live in Africa. I don't know what to eat in place of eggs. I could try baked beans on toast. I have tinned sweet corn... Please...HOW LONG WOULD I HAVE TO BE EGG FREE, BEFORE ANY CHANGE IN D?? Don't think meat is an issue.....
  18. Rebecca Clayton
    Knitty kitty... re benfotiamine. Can you suggest/recommend what dose to take and for how long? I'm 5'6" 48kg. Thank you!
  19. Rebecca Clayton
    Thanks knitty kitty. I have not tried benfotiamine. I'll try anything! Am presently taking 1 tbsp type 1 bovine collagen powder daily - they say this can help repair "leaky gut" and this condition likely with colon inflammation associated with collagenous microscopic colitis? Any other advice/suggestions welcome!
  20. Rebecca Clayton
    Thanks for comments Scott. I actually have type 1 RCD (and collagenous microscopic colitis.) The one course of Entocort I had (starting on 6mg daily) was taken by "open capsule." i.e. granules removed from capsules and swallowed with water. It was thought my symptoms were due more from the MC rather than the RCD hence this form of taking Entocort. My symptom...
  21. Rebecca Clayton
    Diagnosed with refractory celiac disease and collagenous microscopic colitis a few years ago. D since 2016. Diet highly restricted as sensitive to lactose and nitrites/nitrates etc etc. Same Diet daily - 2 eggs breakfast, 2 eggs lunch, meat, potatoes or rice and 1 veg evenings. Make own gluten free cake (live in Africa and VERY little gluten-free foods available...
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