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About GFinDC

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

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  1. Hi Kasia2016, Yes, celiac disease symptoms can vary widely. Some people have no symptoms, we call that silent celiac. Other have difficulty walking (gluten ataxia), skin rashes (dermatitis herpetiformis), and thyroid disease (Hashimoto's thyroiditis). The list goes on and on. GI symptoms can vary widely too, from mild symptoms at times to severe symptoms.
  2. Hi egs1707, Welcome to the forum! Irene is right, you should not be gluten-free until all testing is completed. The celiac disease tests are checking for immune system reactions and damage, and when you go gluten-free that starts to decline. So the tests may not show the true immune reaction that is going on or the normal damage. They may not show any damage in fact and you could get a false negative diagnosis. You body starts healing and out the window go the test results. Your doctor gets an "F" grade if they told you to go gluten-free now. But you aren't alone in having a doctor who doesn't understand the celiac disease testing process. Many of them are woefully ignorant of proper testing for celiac disease. That why the current estimate is somewhere in the range of 85% of celiacs in the USA are undiagnosed. It doesn't help when doctors screw up the testing themselves. Or refuse to test people. Which is also far too common. I was vegetarian for 5 years. I am not anymore and don't recommend it. It is hard enough living gluten-free and finding safe food to eat and adequate nutrition for healing a damaged body. I used to eat a lot of soy products when I Was vegetarian, but now soy makes me physically sick. We can sometimes develop reactions to foods we eat a lot of while our guts are inflamed IMHO. Soy is not a healthy food anyway from my reading. I can't do dairy now but may people who start out lactose intolerant end up being able to eat dairy after they have recovered. The best advice I can give is to avoid as much processed food as you can, and eat mostly whole foods you cook yourself at home. When you do cook, cook big, and freeze the leftovers. That way you can quickly take a small portion of food out of the freezer and reheat it. Being celiac it is more important to learn how to cook. Unless you are wealthy all those gluten-free processed foods add up quick. Plus gluten-free processed foods often are lacking in fiber and vitamins. You'll want to watch out for vitamin deficiencies also. Since celiac disease damages the villi in the small intestine, the vitamins and minerals etc are not digested and absorbed well. So celiacs can be low on vitamin D, calcium, and one other one I forget. Vitamin B-12 may be low also ( it is important for nerve health). Then there are some vitamins that vegetarians tend to have problems getting enough of also to consider. Adjusting to living with celiac disease means adjusting to a new diet and some lifestyle changes. There's lots of us that make that change every year though, it's not impossible. You will most likely end up eating better, more nutritious food than many of your peers. And you will avoid a pletora of additional health concerns that can come along with untreated celiac disease. Learning to cook can be an adventure and you may enjoy it once you start. you may find your taste in foods changes once you have been gluten-free for a while too. Recovery from celiac disease can take some months. The immune system is very serious about protecting us and doesn't give up quickly. Also it always remembers so it will react to even small amounts of gluten. I live with gluten eaters at home and I do fine. I just am careful about rinsing dishes off and so forth before using them. There is a Newbie 101 thread at the top of the coping with forum subsection. It may provide some helpful info.
  3. That's great to hear you are feeling better Nightsky. I really think when our GI systems are in distress already that it doesn't take much to set off symptoms. Once I eliminated the other foods that cause me symptoms that helped a lot too. And added some extra vitamin D to my diet and selenium. Many of us have developed reactions to other foods besides gluten and need to avoid them to keep symptoms at bay. For me nightshades, carrots, soy, dairy, and celery all cause symptoms. It took me awhile to figure out all those food culprits, but it made a big difference getting them out of my diet. But we are all individuals, and our bodies react individually. So you may or may not have additional food intolerances develop. Celiac is one of those life journey things and we learn as we go. Just keep the bottle of aspirin handy!
  4. Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training. Since that probably won't happen, I suggest you find a new doctor. He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing. The testing for celiac disease depends on the immune reaction being active. Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically. The University of Chicago celiac disease center recommends: ******************************************** Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy. That may cause worse symptoms than before when you were eating gluten. So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area? They exist in many parts of the USA and world. They can be a good place to get a knowledgeable doctor recommendation. There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
  5. Hi Kbear, I don't consider myself overweight, I just have one of those pleasing gluten-free beer bellies the girls like so much! I was always pretty slim but did put on some weight after going gluten-free. And getting somewhat old-manish. When I first went gluten-free I had one heck of an appetites and ate like crazy for a while. I figure my body was trying to repair itself and needed lots of nutrients to do the job. I agree with the idea of a low carb, high protein diet. Carbs have a tendency to burn off fast and make us hungry quicker. Proteins are slower to raise blood sugar and keep it at a more even keel for longer than carbs. So a low carb is a great way to go IMHO. Sugar makes you hungry faster is the gist of it. Welcome to the forum!
  6. Hi Besse, I don't think you posted any IgE test results, right? IgE is the immune reaction for allergies. If she does have an IgE reaction, that is very different from celiac disease which is IgA and IgG related. IgE reactions (allergies) are also more dangerous in the short term. If she is having an IgE reaction to wheat she should definitely not be eating any of it at all. Allergy reactions can become more severe suddenly and cause death. Consider the peanut kid stories, those are IgE allergic reactions. I am not sure what your doctor means by a gluten allergy. Gluten is (around here) considered the protein in wheat, rye and barley that causes a celiac reaction. The celiac reaction is not an allergy because it does not involve the IgE antibody. A gluten allergy in theory would mean an IgE reaction to wheat, rye and barley protein. This may seem like quibbling over details abut it is important to understand the IgE reactions are different. Everybody is right about he doctor screwing up. They should not have changed her diet before testing for celiac disease was completed. Including the endoscopy which most doctors require for a full diagnosis of celiac disease. I agree, there is no reason to take someone off gluten to treat lyme disease. That makes no sense. But a people do try alternative treatments for lyme disease because it is hard to cure. So I am not surprised if people are promoting gluten-free as a lyme disease treatment. The gluten-free diet has become popular treating all kinds of conditions in the alternative medicine field. Your daughters' symptoms may vary like the wind. That doesn't change the need for a gluten-free diet if she really is celiac. The human body is a complex thing and has many compensation systems to deal with problems. One of those systems is the immune system. It produces antibodies to fight infections and it;s really good at that job. And once it learns an enemies (germ) identity it never forgets it. Even a tiny amount of gluten can kick of an immune response. When was the last time you saw a measles germ? But your immune system detects them and kills them if you have the immunity. In celiac disease the immune system learns to react to gluten and attack it when it gets in the intestinal lining. The intestinal lining (villi) are in the way to they get destroyed along with the nasty gluten. An immune reaction continues until all the offending invaders are dead and gone. Then it may start tapering off very quickly ( a couple weeks ) or over months. Maybe longer. The villi damage impairs the ability of the small intestine to absorb nutrients. So a child with celiac disease sometimes has short stature because they are basically starving even while eating plenty of food. Vitamin levels may be low and minerals. Fatigue may occur also. Pale or mottled facial complexion and many other symptoms. Celiac disease can affect the entire body. You are correct about symptoms varying. Before I went gluten-free I had days that I was just fine. I also had not so fun days. It was quite variable. I did have problems with projectile vomiting at times. My symptoms often started about 30 minutes after eating gluten. Dairy also caused me plenty of GI symptoms. The intestinal villi also produce enzymes and one of them is lactaze, the enzyme that digests milk sugar. After being on the gluten-free diet a while, some people regain the ability to digest dairy, but not all do. It should affect her test results to stop dairy for a while though. Lactose intolerance can cause plenty of gas and discomfort. Anyhow, welcome to the forum! I am not always so long winded. I hope something in there helps a little.
  7. Hi Ennis_TX, I think you are right about some dairy proteins being able to get past the intestinal barrier at times. You are also right about people having additional food intolerances beyond just gluten. We can develop an intolerance to any food really. I have several myself, and many of the other members have them too. I do think it's a little early for Mark to start looking for those other intolerances at this point. He was only gluten-free for 4 days when he posted. It takes a while for the digestive system to heal and the gut biome to normalize. With so much going on at the beginning of the diet , it can be confusing to try and narrow down other possible food issues. Dairy is one common one though that affects may celiacs. @Mark Johnson, Hi again Mark, I hope you are getting something useful out of the discussion on your situation! It's true that sometimes our guts take quite a while to settle down after going gluten-free. I had gut spasms for about 5 weeks after starting the gluten-free diet. I could look at my abdomen and my belly would be pulsating. Alien babies here we come! The immune system has to wind down it's attack, the gut bacteria has to normalize, the gut lining has to heal, your body needs to start doing a better job absorbing nutrients so it can heal also. To help all that process along, it is good to eat a simple, whole foods diet. Meats and nuts, veggies, maybe a little fruit. Avoid most sweet things as the sugar feeds gut bacteria and makes lots of gas. It's best not to eat out also, but make your food at home. After a few weeks of this (or months) things ought to get better. Be aware though that the immune system will never forget about hating gluten. After being gluten-free a while you may find your system is reacting to very small amounts of gluten. So you will need to think about possible cross-contamination, like shared peanut butter or other condiments. Or kissing a gluten eater before they brush their teeth. Ewww! I suggest you get some Pepto Bismol and milk of magnesia. Pepto Bismol can help soothe the gut a little. Peppermint tea is good for gas. Stay away from dairy but do try it again in a few months if things are going well. Some people can eat dairy fine but others never regain the ability to eat it. You should have a test for your vitamin and minerals also. Some of them could be low due to malabsorption. There's a lot to learn about celiac disease but we are glad to help.
  8. Hi Rhian (Nightsky), Welcome to the forum! I had some similar kind of experiences with getting sick from air odors years ago myself. Once I was at a pizza place with a couple people and just drank a soda and got sick. I figure there was airborne gluten that had landed on the stack of water glasses. Another time I was at a church event and got sick from perfume a woman was wearing. She had really strong perfume on and it made my stomach turn. I had to go out of the room and lay down for a while. I don't think that was gluten related, but just the strong smell was enough to make me sick. Both of these events happened years ago when I was much sicker all the time. Since then I've gotten better and live in a shared household with gluten eaters and it is no problem. I just keep an eye on things and am careful. I can walk through the bakery section of the local grocery and not have any problem. I do go late in the day usually so all the baking is probably over for hours. But I don't go in the pizza shops any time of day. What I've found is that now that I am doing better most of the time healthwise, the minor amounts of gluteny smells are not a problem. I don't know if that womans' overpowering perfume would still make me sick or not. I think it is true that some people react to strong odors. If you are already sick I think your body may react more strongly than a person who is well also. You might be more sensitive temporarily. Kind of the straw that broke the camel's back theory. I believe you can get better though. I did and though it took years to get to feeling pretty well, it's definitely worth making an effort.
  9. Hi Ennis, Welcome to the forum! I think you got part of that incorrect. Gluten doesn't get "stuck to the intestinal walls" or caked on. We aren't baking cakes in our guts! Gluten exposure can cause constipation though, but that shouldn't last more than several days or so. The only things left behind in our guts generally is lots of bacteria, and the gut lining itself. The stool being gone it takes all kinds of things with it, including the gut lining at times when celiac damage is happening. Celiacs with severe gut damage have an almost smooth gut surface, as all the surface villi are gone. I think they call that Marsh stage 4 or some such. Dairy shouldn't be able to penetrate the gut more easily as a result of removing gluten from the diet IMHO. Although you may have some medical knowledge there that I haven't seen. If so, please share so we can all learn. You are right about digestive issues possibly getting more noticeable a few weeks after going gluten-free. Our guts are damaged and the bacteria balance and enzyme production are out of whack, Those things will hopefully start to recover quickly but the process of getting back to "normal" can be a little time consuming and rough. Actually, when our guts biome is out of balance, and our ability to digest foods is impaired, it can cause many foods to seemingly cause a reaction. It can be hard to tell for awhile what foods are actually causing a reaction, versus just being hard to digest. If everything is hard to digest, everything can be a problem. I think the idea of rotating foods is somewhat helpful, as we might develop reactions to some foods if they are present frequently while our guts are irritated. I am not sure there is any medical proof on that idea though.
  10. Hi Mark, There is usually an endoscopy after the blood antibody tests. You should be eating gluten until the endoscopy is completed and test results received. You may not be able to get a celiac diagnosis without the endoscopy. They should take 4 to 6 biopsy samples during the endoscopy to check them for intestinal damage. If you do have celiac disease, going gluten-free isn't an instant cure. Actually, there is no cure for celiac disease. What we can do is treat the condition by not eating any gluten, and switching to a healthy diet. Eating mostly whole foods and avoiding most processed foods is a good thing for us. Especially when first starting the diet, when our systems are adjusting and healing. Yes, you should probably avoid dairy for a while. Celiac disease damages the villi lining the small intestine. Those villi make the lactaze enzyme that digests dairy sugar (lactose). Without the lactaze enzyme, dairy sugar is left whole and feeds a bacteria explosion. You become lactose intolerant. Recovery from celiac damage can take a varying amount of time. It could go fast or it could take18 months or so. We are dealing with an immune system issue and the immune system doesn't turn off on a dime. It takes some time to wind down it's attack.
  11. Hi Donna, The DGP (Gliadin (Deamidated) Antibody IgA) Result = Positive means you were positive on one of the antibody tests for celiac disease. You only need to be positive on 1 antibody for a diagnosis. Usually though a doctor will request and endoscopy with 4 to 6 biopsy samples for microscopic examination of gut lining damage to confirm celiac disease. Since you already had an endoscopy I don't know what they will do. If they took biopsy samples already or if there was visible damage, they may go ahead and diagnose you with celiac disease. You should keep eating gluten until the testing and results are complete. Which they may be but only your doctor can say for sure. If it is celiac disease you may have found the answer to your long years of digestive symptoms. Celiac disease is the only autoimmune disease where the trigger is known. Eating wheat, rye or barley triggers the autoimmune reactions that causes the damage to the gut (and possibly other body organs). the treatment is simple, stop eating all gluten (wheat, rye, barley). Since celiac disease interferes with the ability of the gut to absorb nutrients, you may begin to feel much better after your gut is healed. That can take some time though. The immune system is very determined not to let us die from noxious invaders, and the reaction (antibodies) take time to taper off and stop damaging the gut. If you've had the mumps or measles or any other immunity shot, you know they protect you for life in most cases. That's because the immune system learns but doesn't forget. So the immune system always knows to kill mumps and measles germs. In our case, it also learns to kill gluten and part of our intestinal lining. That's no fun for us, but can't be helped. There is a newbie 101 thread post at the top of some forums. It has a lot of info for people new to celiac disease. We can also try to answer your questions, although we aren't doctors. We still like to help and we charge a lot less, as in nothing. Welcome to the forum!
  12. Hi, ttg is just an abbreviation for Tissue Transglutaminase IgG or IgA.
  13. Hi Kathryn, That's a bummer about the insurance. If you are not going to do the doctor thing, then it might be well to consider yourself celiac and eat like a celiac for a year. You'll need to avoid all wheat, rye, and barley. That includes barley malt which is sometimes listed as just malt. I don't know how you eat now. But a good way to start the gluten-free diet is to eat only whole foods you cook yourself at home. Skip all the processed gluten-free foods for a few months until you get the hang of things and start healing. You should also cut out all dairy for a month to see if it affects you. The thing about celiac is it is an immune reaction. So it is not just a temporary stomach upset from eating a bad meal. The immune system keeps attacking for weeks to months after exposure to gluten. Allergies are an IgE immune response so somewhat different from celiac disease, which is IgG or IgA. IgE responses (allergies) can cause breathing problems and possible asphyxiation. So they are more immediately dangerous. Weight loss is a typical celiac issue. The immune attack damages the villi lining the small intestine. Those villi are the parts that absorb nutrients into your bloodstream. They also create enzymes that digest milk sugar. Without the villi things don't work good as far as eating and digesting food. Welcome to the forum!
  14. Welcome to the forum Jewler57, Toothwhisperer hasn't been around the forum since Jan-2015, so I doubt you'll get a response from him. But there are plenty of other threads that people can use your advice in! Carry on!
  15. Hi Veggiegirl, You might want to read up on dermatitis herpetiformis (DH) on the forum. It's a rash that some celiacs get that is very itchy. The testing for DH proves celiac as only celiacs get DH. There is a section of this forum dedicated to DH: Cyclinglady is right, celiac damage impairs nutrient absorption. So any supplements you are taking may not absorb well either. I don't know if you are taking supplements to compensate for vegetarianism or are a veggie? But they wouldn't be absorbing well either. It might be a good idea to get allergy testing now. You don't need to wait for allergy testing. It can be done as long as you are not on immunosppresant drugs. Allergies are a different immune response from celiac, but they are more immediately dangerous.