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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About Larapiz

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  1. You chopped a useful link out of something I posted It was so unfair, I didn't want to post here for a long time. I wasn't expecting to hear from the same person who did that to me. So sorry, I can't reply.
  2. I decided to eat most of those foods only once every 8 days. I've actually developed new delayed food allergies to some foods that I was eating once every 4 days. That happened with allergenic foods - seeds and nuts mostly.
  3. What I'm doing is very experimental - but then, going on a longterm hypoallergenic elimination diet is also experimental, and I think it may be bad for my immune system. I do take an antihistamine, the loratadine. The 15 mg loratadine I take every day is more than the 10 mg "standard" dose. I've heard the 10 mg dose is actually a rather small dose, and I found 15 mg works better to decrease the food reaction. My delayed food allergies probably involve mast cells, because the mast cell stabilizer cromolyn helps prevent the reaction, as does the antihistamine. That doesn't imply that my delayed food allergies are IgE-mediated, because there are other immune mechanisms for triggering mast cells. I read an old article where they found that histamine and other inflammatory stuff is released in the gut when celiacs eat gluten. So mast cells might be involved in developing celiac disease.
  4. I call the "other food intolerances" "delayed food allergies" instead. This is appropriate because this kind of food reaction is acquired, specific, and can be triggered by a very small amount of the food, on the order of a milligram or so. I start to feel kind of hazy about half an hour after eating the food, and the mental fog/sludge comes on fully about 4-5 hours after eating, and lasts a few days. There are other symptoms, the most onerous other symptoms are emotional hypersensitivity, anxiety and irritability. Also, this kind of food allergy tends to be associated with other allergic conditions, such as inhalant allergies, allergic asthma, allergic dermatitis. I have horrible inhalant allergies. I have a LOT of delayed food allergies, so many that my diet is rather limited and I have to take supplements to take care of my nutrient needs; and I have to get my medications compounded without the usual fillers because of my milk and corn allergies. Gradual desensitization by eating tiny amounts of the food, has worked for the kind of food allergy that's IgE-mediated and can cause anaphylaxis. It's still a technique that's pretty much limited to research settings, but gradually the mentality about these "classical" food allergies is changing from one of strict avoidance to desensitization. Strict avoidance of these foods can kill people, because they become much more sensitive once they are carefully avoiding the food, and an accidental exposure can kill them. I've read a lot of the research articles on delayed food allergies. They are called by different names in the research - non-celiac wheat sensitivity, often associated with multiple food hypersensitivities; food hypersensitivities associated with IBS (irritable bowel syndrome); gastrointestinal food allergies. Most of the research on adults is on food allergies that cause diarrhea/constipation, because researchers like to deal with objective symptoms. There's a good deal of research on non-classical food allergies such as FPIES (food-protein induced enterocolitis syndrome) in babies and young children, but I don't know if those allergies in children have the same mechanism as the delayed food allergies I have. The mechanism for delayed food allergies is unknown. They are often described as non-IgE mediated. But they could be IgE-mediated, but localized in the gut, so the IgE antibodies to foods don't show up in the blood. The mast cells armed with food-specific IgE might migrate from nearby lymph nodes to the gut lining. People's intestines are designed NOT to have food hypersensitivites, because the gut has to handle large amounts of foreign proteins. It's very maladaptive to have food allergies. So there are a lot of mechanisms in the gut to prevent food allergy. I found out from reading about how tolerance to foods is established in the gut, that it happens by being exposed to the food. The body "masks" delayed food allergies when someone is eating the food regularly, so they don't feel too sick, although they may have symptoms that they don't associate with the food. After quitting the food completely, they can get quite sick from milligram amounts of the food. But this "masking" process is part of an attempt by the body to get over the allergy! Somehow the mechanism for developing tolerance to foods becomes overloaded when people have a delayed food allergy. Perhaps because of chronic inflammation in the gut, an excessively leaky gut, or whatever. It seems that quitting foods that one has a delayed food allergy to, may actually delay developing tolerance to the food. And, I think quitting foods completely may interfere with the mechanisms in the gut that regulate the immune system to turn it away from Th2 (antibody-mediated) responses. The gut is a very important part of immune system regulation. I read that inhalant allergies are regulated partly by the allergens going into the GI tract. After the allergens go into your nose, a lot of them will end up washing down your throat. So it may be that my very restricted, very hypoallergenic diet has actually made my inhalant allergies worse and perpetuated my delayed food allergies. SO, I've been trying gradual desensitization with my delayed food allergies. I've found that taking allergy medications before eating these foods decreases the reaction a lot. I don't get as much mental fog and it doesn't last as long. Also, I don't get the emotional hypersensitivity, irritability and anxiety. I've been taking oral cromolyn, Singulair and loratadine (Claritin) before eating the foods. Oral cromolyn is normally hugely expensive, but I found a compounding pharmacy that will supply it to me for $180/month. I take the oral cromolyn half an hour before eating, and the Singulair and loratadine an hour before the cromolyn. I take 400 mg cromolyn, 10 mg Singulair, and 15 mg loratadine. It would be unbearable to eat these foods without the allergy medications beforehand, because they mess me up emotionally a lot and make life very difficult. I have been eating about 10 mg of the foods to start with. I have a mini-scale that goes down to about 10 mg. I've re-introduced about 15 foods in these tiny quantities. I don't plan to re-introduce any gluten grains, but I have started eating tiny amounts of milk. So far, about 50 micrograms of dry milk. I dilute dried milk in water to measure out this tiny amount. The casein in cow's milk cross-reacts with gluten, so this might help me get less sick from any gluten accidents. Any given food, I've been eating only once every four days. I've "rotated" my foods for years - eating any given food only once every four days, and foods that might cross-react with each other on the same day. I've found that eating foods once every four days helps avoid developing new delayed food allergies. And, I've developed new delayed food allergies to foods that I ate more often than once every four days, even recently. Since eating a food once every four days helps to prevent new delayed food allergies, I hope it will also help to re-establish tolerance to foods. This is different from the oral desensitization methods that have been used to help people get over their "classical" IgE-mediated food allergies. In the research so far, people have generally eaten a tiny amount of the food several times a day, every day. I've been gluten-free since 2001, so that's 13 years now. I haven't gotten over any of my delayed food allergies with strict avoidance, so far as I know. So I hope my desensitization experiments will help. I've been trying this oral desensitization since about the start of this year - so about 3 months now. So far, I've found that my reaction to a given food becomes less after about a month of eating it once every four days. But I haven't found that I became even less sensitive to a food after 3 months of eating it once every four days. Eating 20 mg of the food still makes me rather sick. I have also been trying oral desensitization for some of my inhalant allergies. I've been eating about 50-70 mg of unfiltered honey (which has various pollens in it), again once every four days. Also, I have a horrible dog allergy. So I mailed a piece of towel to a friend, asked him to rub it thoroughly on his dog's hair and skin, and mail it back to me. Once every four days, I take this piece of towel out of its airtight container, snip off about 1/8" of thread from it, and put the bit of thread on a drop of filtered honey (I'm not allergic to filtered honey because the pollens have been taken out). I hold my breath while doing this so I don't have an inhalant allergic reaction. Then I eat the honey with the bit of thread in it. According to research studies, eating allergens doesn't work to desensitize inhalant allergies, because the allergens are destroyed by stomach acid. Letting allergens sit under one's tongue (sublingual immunotherapy) does work. But my inhalant allergies are much more sensitive than most people's, so I think eating inhalant allergens will work for me, despite the research studies. I'm actually much more sensitive to eating inhalant allergens than I am to the food allergens. I got pretty sick when I first started eating 1/8" of thread from the piece of towel, and I stayed sick for a couple of days. So I figure since I do have reactions, my body is probably building up tolerance to inhalant allergens this way. I've been doing this for about two months, and my reactions have become less severe. I used to subscribe to a celiac mailing list, and now and then people would describe gradually reintroducing foods they have delayed food allergies to, after years of not eating them. Has anyone else tried desensitizing their delayed food allergies?
  5. Ketotifen is a good systemic mast cell stabilizer and antihistamine that in oral form apparently works well for food allergies. I have many, many food allergies, not the kind that show up on skin or blood tests. And too many foods are off limits for me now. So I'm looking at medications that might enable me to eat foods I couldn't eat otherwise. I know that cromolyn helps to reduce the food reaction. But I heard that ketotifen is better. But in oral form, ketotifen isn't available in the USA, except from some compounding pharmacies. To get it from a compounding pharmacy, I probably need a doctor's prescription. You can buy ketotifen online, but I've only see the tablets, which have ingredients like corn starch and lactose that I'm allergic to. So are there doctors in the USA who will prescribe it? Or would I have to see a doctor in Canada?
  6. Candida

    Candida makes prostaglandins that change the host's immune system: see http://www.ncbi.nlm.nih.gov/pmc/articles/PMC98248/ I've also read that fungi can cause reactions via the innate immune system. It seems our bodies don't want to allow a decay process to start, so we have built-in immunity that wards off fungi - but that built-in immunity can be very irritating and pro-inflammatory.
  7. I had a food accident yesterday - out of stress I guess, I bought some pomegranate/blueberry juice that I thought was pure pomegranate juice. I'd taken 400 mg cromolyn 2.5 hours earlier. I'm not sure how much that dose had worn off. I took 400 mg more cromolyn right after the blueberry-juice accident. I don't know whether chasing an allergenic food with cromolyn helps or not. But anyway, my reaction was relatively mild. I'm still coping. Without the cromolyn, food accidents make me quite irritable and emotionally reactive, but I don't feel particularly irritable, having taken cromolyn.
  8. One advantage of cromolyn over ketotifen is that it's absorbed very little, so it doesn't make you drowsy. I've tried drowsy antihistamines and been miserable - I'm out of it a lot because of inhalant allergies anyway, and the drowsiness from the antihistamine on top of that is miserable. (ketotifen likely causes drowsiness because of the systemic antihistamine effect)
  9. They get the pure powder, but usually they have to add a filler so the capsule will be filled. I ask for baking soda as the filler - it's inorganic, no protein in it so I've never had a problem with it. And I don't eat the capsules, only the contents. Similarly for ketotifen.
  10. There doesn't seem to be a rule here against mentioning commercial contacts - So, ACC's ph no. is 866 222 7993. They do a lot of compounding, and they're good at getting stuff. Someone else said ketotifen works better if you can get that. ACC also has ketotifen. It's worth checking with more than one compounding pharmacy, because prices may vary a lot.
  11. Candida

    That's weird. Anyway, if one candida killer doesn't work for you, you can always try another. Nystatin is a good one. I'm reluctant to take diflucan because it's absorbed and it's hard on the liver.
  12. Candida

    Gary Huffnagle writes in The Probiotics Revolution about the kind of diet that is good for gut flora. He's a scientist who studies how gut microbes interact with the immune system. I trust his thoughts on it because he's science-based. There's a heck of a lot of speculation around about Candida, people self-diagnosing themselves with Candida, etc. It's gut microbes in general that are important, not just Candida. Gary Huffnagle advocates a lowfat diet, he says starchy vegetables are OK as long as you are getting plenty of fiber and not much sugar (better to eat potatoes rather than potato starch for example). The fiber feeds good bacteria. I try to keep my fructose consumption down by eating very little sugar and not much fruit. I think fructose tends to encourage Candida because it isn't absorbed into the body as quickly as glucose is, so it hangs around in the small intestine and feeds unfavorable microbes like Candida. As for tests, I don't know whether stool testing for Candida is valid. I do think that getting sick after taking an antifungal suggests a Candida problem and that would be a good way to explore if you have a Candida problem - just try killing it with pau d'arco, caprylic acid, nystatin, etc. and if you don't feel bad initially while taking a Candida-killer, you probably don't have a problem. The advantage of that is that you can kill any Candida you have while deciding whether you have it I haven't found any scientific support for the idea that avoiding carbs in general is a necessary part of an anti-Candida diet.
  13. Does Ketotifen act as a systemic mast cell stabilizer, or only in the gut? I suffer terribly from inhalant allergies. I use Nasalcrom and it helps some, but I was wondering if there is a systemic mast cell stabilizer.
  14. Candida

    For me I figure I have too much candida if I drink pau d'arco, a candida killer, and I get sick (dieoff reaction). And if I drink pau d'arco and I don't get sick, I think I don't have much candida.
  15. http://veganhealth.org/b12/tested veganhealth.org is a website by an RD, Jack Norris, who gives good reliable information. Someone told me they considered B12 to be an upper. I never noticed that, but maybe if I took a lot, I would.