Aretaeus Cappadocia
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Latest Celiac Disease News & Research:
Everything posted by Aretaeus Cappadocia
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@dixonpete, I've seen a number of your posts about hookworms and celiac. I am fascinated (and, tbh, a little disgusted). I ask myself the question, What evidence would be sufficient to convince me to try this. Frankly, I don't know.
My reason for posting, though, is to ask you personal medical questions that I hope you are comfortable answering.
- how were you diagnosed with celiac in the first place? what were your IgA and biopsy scores, if any?
- have you been getting standard celiac medical followup, and if so, what are the scores?
It sounds like the therapy permits you to eat gluten without the acute symptoms of celiac. Did you / do you have any of the non-alimentary symptoms, such as vitamin or other nutrient deficiencies, hypothyroidism, brain fog, etc. If so, how do these track during your therapy cycle?
Based...
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As for doubling the frequency of inoculations, that would mean doubling the frequency of incubations. Twice the work for no gain?
I know 25 larvae might seem high, but I don't experience side effects, and I know since they die off at six months or so (with me) that I'm not building up a large colony. So I think I'm good.
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Just to clarify my question: you currently inoculate every 6 mo +/- when the hookworms die and the therapy wears off. --and you become vulnerable to gluten. If you took half the dose +/- every 3 mo, couldn't you get a more even therapy?
I get it that it's work to run the incubation and innoculation. It's more of a curiosity question on my part.
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I inoculate every 5.5 months, and it appears that with me the hookworms die off around 6.5 months. The larvae don't develop into their adult form for 30 days or so, so you can't count on any immune help till then.
It's true doing it your way there would less chance of running out. I know a guy who does 2 larvae every 6 weeks. I suppose my model is the laziest possible, with the minimum number of inoculations. It is pretty cool not to have worry about it except for 2x a year.
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Pear Bread
Aretaeus Cappadocia replied to Aretaeus Cappadocia's topic in Gluten-Free Recipes & Cooking Tips
To me, this bread is pretty special. The first time I tried adapting it I used a commercial gluten-free flour blend and it was good, but when I experimented using individual flours I tried the almond flour and it took it from good to special. I add walnuts or pecans to a lot of my desert bread recipes but I haven't tried nuts with this one. I would guess... -
It's kind of funny that before my celiac diagnosis I did a lot more "functional eating" where I just needed a meal and wasn't so worried about how interesting/delicious it was, just needed to eat something. After my diagnosis I've become a dedicated cook and I am very tuned into flavor and novelty. In answer to your question, I find the recipe very forgiving...
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Your post doesn't mention if you are seeing Doctors about this and what they had to say, or if you are just trying to manage it by yourself. If you aren't getting medical support, that is the first place to go. On the other hand, if you've been on a diagnostic odyssey with Dr after Dr being perplexed, consider getting your genome sequenced (search...
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Thanks. Not a big thing, particularly because most likely it is "true" but not yet demonstrated.
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I followed the link and read the abridged version of the article there. It's possible I misunderstood your review or the original article, but I came to the opposite conclusion based on what I read. Below is an extracted quote where the last line gives the conclusion of "no strong evidence". Of course, not finding evidence does not mean it doesn't exist...
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You may know this already, but in addition to what you've described, you may also want to get a genetic test. About 1/3 of people have one of the genetic markers that are necessary (but not sufficient) for getting celiac. If your son is one of the 2/3 of people that don't have the marker then it is almost certain he does not have celiac. (The genetic test...
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Healthy diet leading to terrible bloating
Aretaeus Cappadocia replied to cristiana's topic in Related Issues & Disorders
...but, but, you are a Stegosaurus?! -
Interesting article and food for thought (no pun). I read the original article and I thought there were some weaknesses in their approach that they did not acknowledge. First, while the UK biobank is a wonderful resource and I'm happy to see this kind of study using it, I don't understand how people were selected to participate in the biobank (it...
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Hi, I just wanted to comment on this aspect. If I understood correctly, your tTg-IgA went from >250 to 218 in about 7 weeks (Jan 21 to ~Mar 13) with known inadvertent gluten ingestions during that time. To my knowledge, clinicians usually wait until 3-6 months of true gluten free diet (no shade) before retesting for celiac IgA levels. I don't want to discount...
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small comment to add: If iron rich diet and oral supplements are not sufficient to bring iron into the normal range, consider asking your Dr about iron infusions. My celiac (adult) child had chronic, moderately severe anemia even with healthy diet and extensive use of supplements. A series of (5 if I remember correctly) infusions remediated the problem.
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.... and right after posting my comment, I saw this relevant post. Below the primary article are a few other articles on related topics.
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I'm not certain if I understood your post precisely. The iron infusion I mentioned before probably would not be useful if your "iron, ferritin and binding all in mid range". With normal iron, ferritin and ferritin binding but low red blood cell count, it seems like it is worthwhile reviewing/supplementing your B vitamins like @knitty kitty is suggesting....
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"Fourteen months after treatment with engineered immune cells, the recipient has no symptoms and doesn’t need to take medication." Woman had 3 autoimmune diseases that attacked different types of blood cells: autoimmune haemolytic anaemia, immune thrombocytopenia, and antiphospholipid syndrome. Her situation was desperate and likely would have been l...
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Child was an adult so they scheduled. Was seeing a lot of docs at that time. Could have been general practitioner or a specialist. However I went along for the infusions. It was really easy. Outpatient infusion unit at the local Kaiser medical center. Make an appointment, walk in, comfy chairs, juice boxes - they really put some effort in to reduce the stress...
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The Best Gluten-Free Chili Con Carne (Rich, Hearty & Easy to Make)
Aretaeus Cappadocia commented on Scott Adams's article in American & British
Interesting recipe. I'm gonna give this a try next time I buy ground beef. -
Congratulations on your progress! Blood iron was a serious issue for my celiac child around the time they were diagnosed. Supplements were not sufficient and a series of (I think 5) infusions were prescribed. It worked as a "catch up" and blood iron has been normal since then (with supplements). Might be what you need to get a reset.
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interesting idea, but awfully expensive. best price I found was around $4 per ounce at 4 ounces, or for a larger size, $41 for a pound.
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Gluten free nuts
Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
From time to time I've noticed that a product at Costco will be "discontinued" and some months later it reappears. Another place you didn't mention is AzureStandard.com. I've purchased a lot of products from them for my gluten-free diet, including several kinds of nuts. Sometimes they are very clear that a product is gluten-free or gluten-containing... -
I don't know if it is common but you are not alone. I don't know the definitive story, but it appears that Barrett's is more common in celiacs than in the general population: "We found intestinal metaplasia in the distal esophagus of 16 of 60 (26.6%) celiacs ..., in comparison with a control-group prevalence of 10.9%..." https://pubmed.ncbi...
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I have a brother who I told that I was diagnosed with celiac, that I've gotten (unexpected to me) health benefits after going gluten free, and that he should get tested because he has an elevated risk and arguably some symptoms. Last we talked, he decided he didn't want to get tested because he saw the gluten-free diet as impossibly limiting. In other words...
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OK, I should be doing something else rn but I couldn't resist doing some fast research. The gateway test would almost certainly be the patch test where they stick a patch on your back for 48 hr to see if you get a rash. "Diagnosis of SNAS begins with a thorough clinical history documenting ACD.12 A positive nickel patch test is nearly always part...
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I don't know - I haven't read very far yet. When I get there I'll try to remember to post.
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If you get the rash, you know you have a nickel sensitivity but you don't know if nickel in food is causing you problems. If you don't get a rash, you don't really know anything new, except that it is less likely you have a nickel sensitivity.
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I wasn't trying to distinguish 2 types of reaction. I think there is only the Type IV reaction that some call hypersensitivity but others might call allergy. I don't know the cost, but I was triggered to look this up after reading your thread and the discussion of Type IV reactions because we found out that my (now) celiac child had nickel sensitivity...
