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Corinne D.

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Corinne D. last won the day on December 12 2019

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About Corinne D.

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About Me

Diagnosed celiac at 37 yo in 2017 and strictly gluten-free ever since. Very high anti-Ttg antibodies and Marsh 3 villous atrophy - both resolved one year later. But other issues came up then - ulcerations in my duodenum and a weird infiltrate of PAS+ macrophages of unknown etiology, not Whipple's disease, nor any other infection. These issues cleared after another two years, some six months after I had stopped eating plants.

Although technically healed, I am left with very many food intolerances, which I have developed gradually since diagnosis and due to which I have been functioning on an ever more restricted diet. I am currently only able to eat beef with limited symptoms. All other foods, even in very small amounts, cause horrible burning abdominal pain and sleeplessness, as well as diarrhea, sometimes bloody and/or with undigested food. These symptoms occur with a delay of 12-24 hours after ingestion.

Apart from chronic infections, medical experts have also excluded: other autoimmune diseases, refractory celiac type 1 or 2, cancer, any IBDs, autoimmune enteropathy, CVID, mast-cell disorders, lysosomal storage diseases, histiocytosis and other rare genetic diseases. I have HLA-DQ2, one copy.

  1. Yes, first I had to fast for at least six hours before the MRI. Some protocols may have you on a low-residue diet for a few days before. About one hour before I had to drink some laxative to completely empty the small bowel, but a lot less than the amount for a colonoscopy, maybe like half. They...
  2. Hi blurryface, I had a small bowel MRI, because I had ulcerations in my duodenum and my doctors wanted to see if they were also present in the jejeunum - the part of the small bowel beyond the reach of endoscopy. It usually shows any structural abnormalities in the intestine, lesions, ulcerations...
  3. Hi JD, I did the videocapsule endoscopy. The advantange is that it is less invasive than the traditional version, there is no anesthesia and it goes through the whole length of the small intestine. With the traditional one they can only go as far as the duodenum. The downside is that they cannot...
  4. Hi Stephanie. Dermatitis herpetiformis is a form of celiac disease. Apparently, celiacs with DH may not have elevated serum antibodies, but if the skin biopsy is positive, there is no room for doubt. You should most certainly go gluten free as soon as possible. And very strictly too, avoiding all...
  5. Hi Kate, I found a no-filler multi from Pure Vitamin Club. Contains most vitamins and minerals with the notable exception of iron (because it's generally poorly tolerated). However, the dosages may be rather low.
  6. Hi Mary Jo, It is great that your antibodies are decreasing. However, a still positive result after one year gluten free could indicate either that gluten is still sneaking into your diet, or that you have some other autoimmune issue brewing. I believe these antibodies can also be elevated in...
  7. Hi Matt, have you tried eating only well-cooked fruits and vegetables? Raw stuff can be tough to digest for a while for a damaged gut. Hang in there.
  8. knitty kitty, in February, when I stopped tolerating some of my vitamins and my medication, I took them all out for a week, then reintroduced them one by one. Vitamin C caused no issues, I only reacted to the steroids and the vitamins with fillers. But I can repeat the experiment, no problem, and...
  9. Perhaps I have not been clear. I have no symptoms on a regular basis, when I eat beef and take vit. C, calcium and potassium. In fact, I feel great, all buzzing with energy and good mood. I work, exercise, do yoga, meditate, write poetry, cook, clean up, sleep well, make love and can't wait for this...
  10. @knitty kitty, thanks for the warning. As I was saying I took a B50 complex daily for a few months with absolutely no issues, so I don't expect any with pure thiamine. I will start very low anyway, as I do with any food/supplement. I gave up the B50 because I started having bad abdominal pain...
  11. Naltrexone is approved, but only for alcohol withdrawal and only on prescription.
  12. NNowak, thanks, I've had a look over Dr. Theoharides's research. I know MCAS is tough to diagnose and would be ready to believe I have it, even if a specialist would not diagnose me with it. It is just strange that I have no skin symptoms, no flushing, nothing obviously looking like a histamine reaction...
  13. knitty kitty, you may have a point and thank you for making it and supporting it with those articles. I do try to get as much nutrition as I can, although my diet is so limited. I am aware that vitamins get destroyed by cooking and this is why I try not to overcook my meat and will actually head...
  14. @knitty kitty Thanks a lot for the info. There are many symptoms of sulfur intolerance that I don't have. I only get digestive symptoms (pain, diarrhea) when I eat a very small amount of anything else but beef. I have a running prescription for monthly labs and so far I have been adjusting my...