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About GFinDC

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    A little farting never hurt anybody... :-).
  • Birthday 12/26/1957

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    Amesville, Ohio USA

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  1. Hi Janst, It might help to simplify your diet. Eliminate possibilities of gluten sneaking into your diet. It's pretty easy to make mistakes with your diet when transitioning to gluten-free eating. I suggest eating only whole foods for a 6 month period until you get used to things. Cross contamination is another thing to look out for. Shared peanut butter, butter, or other condiments can spread gluten in small amounts and make us sick. Sometimes medicines or vitamins can have gluten, even teas and spices are possibilities. Kissing a person who has eaten gluten recently can cause problems too. Keep trying because every time you make a mistake you learn something. You might want to try stopping all dairy for a while to see if that helps also. And welcome to the forum
  2. Hi DoitY, I also think the reflex teminology is confusing in this case. I read on another testing site that the reflex tests are done when the total IgA is low. In that case they perform the IgG antibody tests and call it a reflex test. Different site though so they may not use the terminology the same way. Your total IgA is not low so that's why the reflex terminology is confusing I think. And so we stumble forward through life... Maybe someone else has a better explanation of the term reflex panel?
  3. Hi plumbago, No, D is not a symptoms only associated with severe celiac disease damage, if that's what you are thinking. Every time we ingest gluten the immune reaction is kicked off again, and the damage starts all over. If we ingest gluten daily, the immune reaction never stops, and we end up with significant damage. If we stop eating gluten, the immune reaction will decrease over time, and the damage will decrease also. Healing will also happen as well. The moral of the story is Stop Eating Gluten!
  4. Hi Weary, I think what you are talking about is refractory celiac disease. Refractory celiac disease is when the immune system does not stop attacking the gut villi even in the absence of gluten for a long period of time. I don't know a perfect treatment for that condition, but sometimes people use enteral (tube) feeding. Refractory celiac disease is pretty rare so not many members have direct experience with it. I posted a link to a thread started by glutenwrangler who used enteral feeding. I think in glutenwrangler's case they thought he had refractory celiac disease but eventually were thinking he had eosinophilic esophagitis. But glutenwrangler hasn't been around the forum for years. I've read about people with Crohn's Disease using low dose naltrexone as treatment. I think if you have a serious food problem doing the Fasano type diet for a year or more might make sense. Maybe give your immune system more time to settle down?
  5. We can't see the video carle. The site is banned from celiac com for spamming. Not having seen it, I'd guess they are selling something?
  6. Sorry Doit, Ok, I think I see what you are talking about. The serum IgA test? The serum IgA is to verify if your body does make IgA antibodies. Not all of us make that particular antibody type. you do make IgA antibodies though, and your reading is fairly high. the way I understand it, the serum IgA is not specific to celiac disease. It does indicate a level of antibody activity though. So perhaps you are fighting an infection or something? Or it is celiac and for some reason your blood levels of antibodies are not high enough to detect right now. The below info on serum IgA is from Quest Labs. ******************************************************************** Test Highlight IgA, Serum Clinical Use Diagnose IgA deficiencies Determine etiology of recurrent infections Diagnose infection Diagnose inflammation Diagnose IgA monoclonal gammopathy Clinical Background IgA is the first line of defense for the majority of infections at mucosal surfaces and consists of 2 subclasses. IgA1 is the dominant subclass, accounting for 80% to 90% of total serum IgA and greater than half of the IgA in secretions such as milk, saliva, and tears. IgA2, on the other hand, is more concentrated in secretions than in blood. IgA2 is more resistant to proteolytic cleavage and may be more functionally active than IgA1. IgA deficiency is the most prevalent isotype deficiency, occurring in 1/400 to 1/700 individuals. Many patients with IgA deficiency are asymptomatic, while others may develop allergic disease, repeated sinopulmonary or gastroenterologic infections, and/or autoimmune disease. Individuals with complete absence of IgA (<5 mg/dL) may develop autoantibodies to IgA after blood or intravenous immunoglobulin infusions and may experience anaphylaxis on repeat exposure. Elevated serum IgA levels are associated with infection, inflammation, or IgA monoclonal gammopathy. Method In this nephelometric method, anti-human IgA binds to IgA in the patient sample, forming an insoluble complex. The amount of light scattered by this insoluble complex is proportional to the concentration of IgA present in the sample. ********************************************************************
  7. Hi Carle, Congrats on your symptoms going away. I did seem to have reactions to rice for a while after going gluten-free. But after some years on the gluten-free diet I can eat it again. So reactions can change over time. I was searching for an article on gluten in common store products, but didn't find it. There was a group that did testing on some common grocery products like beans, rice, corn etc that we would normally consider to be gluten-free naturally. But they found some level of gluten in some of them. So it's not impossible to pick up something off the shelf that ought to be naturally gluten-free and find it is contaminated. That may have happened with the rice you ate. A quick rinse of water before using the rice might help.
  8. Hi Doit, The reference ranges to the right of the test result show the values the result ought to be in for normal readings (no celiac disease). Your results appear to show no higher than normal results that I can see. However, you aren't following the recommended process for celiac disease blood testing. The blood test is supposed to preceded by 12 weeks of daily gluten eating. That is generally enough time to cause a sufficient quantity of antibodies to build up in the blood stream to be detectable by the tests. Not having antibodies in the blood stream doesn't mean you aren't being damaged. People with DH (dermatitis herpetiformis) sometimes test negative on the standard blood tests. My theory is possibly because the antibodies are concentrated in the skin instead of the blood. In gut damage, it is possible the antibodies are concentrated in the gut, instead of the blood. After some time they show up in the blood also. The thinking is the antibodies go where the work is. Anyway, theories aside, it takes very little gluten to kick off an immune response. Those antibodies are not aimless soldiers. They start doing their work and destroying gluten and gut tissue even if you don't feel symptoms. Did you know there are some people who have no GI symptoms of celiac disease but still have it? They call that silent celiac. So going by symptoms is not a good way to judge actual damage in the gut. You are wise to go in for followup testing, but the followup testing is hopefully to show compliance with the gluten-free diet, and lower antibody test results. Have your close family members been tested for celiac disease? It sounds like they should be. There is a 5% higher chance of them having celiac than the general population. Welcome to the forum!
  9. Hi carle, I wonder if you might have dermatitis herpetiformis (DH)? DH is a skin condition associated with celiac disease. the reason I thot of that is because you had a flare up from eating rice. Rice has iodine in it and iodine makes DH symptoms worse. DH is primarily a skin rash that is very itchy. Anyhow, congrats on your PSA symptoms reducing! That's great that you figured out a diet change to help it. Of course it might not be iodine that made that change for you. I just think it is interesting your symptoms flare from rice and people with DH have symptoms that flare from iodine.
  10. You are welcome David. They should take 4 to 6 biopsy samples for microscopic examination during the endoscopy. They then look at those samples for damage characteristic of celiac disease. The blood tests include DGP IgA and DGP IgG, plus ttg IgA and total IgA. You only have to be positive on one blood antibody to gliaden to have celiac disease damage. It's good to catch the condition early as it gives you a chance to avoid major damage to your body over the years. Since celiac disease is an autoimmune condition, we never outgrow it or get to cheat on the diet without consequences. The immune system is very sensitive and begins an immune attack with even miniscule amounts of gluten exposure. But the immune system also kills germs and keeps us from dying of many diseases so it's not all bad. There is a Newbie 101 thread stickied in the coping with forum with lots of information.
  11. Hi Egs, Yes, it sucks that so many doctors are ignorant of ceilac disease testing protocols. We have seen many members post on the forum the same issues, that their doctor told them to try the gluten-free diet before doing the testing. Pretty incompetent advice from them IMHO. But it explains why upwards of 80% of celiacs are walking around undiagnosed or misdiagnosed also. Medical not so-professionals at the helm. It may take some time to adjust to gluten-free eating. We learn to eat as children and spend our whole lives eating whatever we want. Being suddenly told to change a lifetime habit can be challenging. But feeling better is so worth it also.
  12. Hi Ken, How about trying some sweet potatoes? They are a great replacement for regular white potatoes and they are not nightshades. Sweet potatoes have more nutrition than white potatoes also. I sometimes eat Jif brand natural peanut butter on rice cakes for breakfast. Quaker brand rice cakes are usually gluten-free, and are marked gluten-free in some cases. Mission brand corn tortillas make a passable replacement for bread. There are several kinds of gluten-free wraps/tortillas available, but the corn tortillas are generally much cheaper. I like Polar brand canned sardines, as they are boneless and skinless and have lots of vitamin D. You could try duck eggs and see if they are better for your digestion than chicken eggs. Avocados are $$$ but they have good protein and nutrition in them. Sauerkraut is supposed to be good for replacing good bacteria in the gut. Actually, many fermented foods are supposed to be helpful for gut issues. Some of your food reactions may go away after awhile on the gluten-free diet. Some may stick around though. I am surprised to hear you lost so much weight after going gluten-free. Usually people gain weight after going gluten-free. It that weight loss continues, maybe you should check with your doctor for other issues. I have food intolerances to nightshades (tomato, potato, peppers and eggplants), dairy, soy, carrots, celery, caffeine, sand gluten. I avoid most sugar also. Maybe you could try cutting out dairy completely for a week and see if it helps? There are dairy free alternatives for many products these days. Like DF milk, cheese, ice cream etc. A lot of those products have soy in them though, which I avoid. Except soy lecithin, which doesn't seem to be a problem for me. Please check you spices and drinks like tea etc for gluten also. It's unusual but sometimes they do have gluten ingredients. An elimination diet is a good way to identify other food intolerances. But at the beginning of the gluten-free diet it can be confusing to do an elimination diet because our gi system may be going through so many changes it is hard to tell for sure what food is causing symptoms. That's where a simple, whole foods diet comes in very helpful.
  13. Sorry for the slow response Ken. I don't think losing weight that fast is normal after going gluten-free. But it is not an easy diet transition for many people, so there are no hard rules. Generally I believe people tend to gain some weight after going gluten-free.
  14. Hi David, Yes, your reactions do sound like possible celiac disease symptoms. Some people have GI system symptoms very quickly, but others have symptoms after hours. The usual process for getting diagnosed with celiac disease is to get a blood test for antibodies to gluten (actually gliaden). Then if the blood tests are positive an endoscopy is generally done to take biopsy samples from the small intestine. You should not stop eating gluten until all celiac testing is completed as that could invalidate the test results. After only 2 weeks off gluten you probably still have antibodies at detectable levels though, so just keep eating gluten and try to get a blood test scheduled right away. You don't need to eat a lot of gluten, but a little every day is needed. One or 2 slices of wheat bread is enough. Welcome to the celiac disease forum!
  15. Hi, If you are near a large city, you could look up a celiac support group now. Contact them and ask if they know any good celiac aware doctors. Many doctors don't seem to be aware of proper tasting processes. If you do find a local celiac support group they may be able to help in other ways too. Otherwise, it sounds like you are doing the right things so far.