Corinne D.
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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.
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I suppose it has to do with how celiac specifically manifests in my body. If you browse this forum, you will notice that a lot of us have intolerances to various other foods apart from gluten - of course, not everyone has the same or as many intolerances as others. However, this it by no means a rule - there are certainly celiacs who can have all the foods... -
When I was still able to have coconut milk, I would choose one with only coconut and water as ingredients and make sure there was no mention of gluten traces. Being very sensitive to all sorts of things, I would never buy one with additives like carrageenan or guar gum. None of the products I chose were certified gluten-free and I never had problems with...
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For calories, you can up your fat intake - choose fattier cuts of meat. Also, olive oil, coconut oil, coconut milk and avocadoes are healthy and high calorie.
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Small Bowel MRI?
Corinne D. replied to blurryface's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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 gave me an IV antispasmodic (glucagon) (to slow down the peristalsis... -
blurryface reacted to a post in a topic:
Small Bowel MRI?
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Small Bowel MRI?
Corinne D. replied to blurryface's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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, and yes, it is usually done to check for inflammatory diseases... -
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 take biopsies, unlike with the traditional one. So they can...
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GFinDC reacted to a post in a topic:
Testing for Celiac
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knitty kitty reacted to a post in a topic:
Testing for Celiac
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Testing for Celiac
Corinne D. replied to Stephanie Burford's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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 cross-contamination. Be sure to check the DH section of this... -
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.
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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 type I diabetes and inflammatory bowel diseases. However,...
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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.
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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 will report next week. As a side note, I take 250mg of vitamin...
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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 confinement to be over to go hiking in the mountains again...
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@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 and diarrhea after a few months of taking it daily. When I...
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Corinne D. reacted to a post in a topic:
Total food intolerance
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Naltrexone is approved, but only for alcohol withdrawal and only on prescription.
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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, and that my digestive symptoms happen with a long delay...