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Everything posted by GFinDC

  1. Right, it's not just cancer. Your symptom free days won't last forever. The damage from celiac will add up and cause more and more symptoms. You are at an age where it is important to have good nutrition. Our bodies ability to absorb nutrients decline as we age. So you already have that plus celiac makes it much harder to absorb vitamins and minerals and fats also. That can cause numerous problems throughout the body, not just the gut. Our brains are made up mostly of fat cells and nerves cells. So when you can't absorb fats and B-vitamins your brain is in trouble. It can be hard to adjust to the gluten-free diet at first. We are used to eating certain foods and those habits need to be broken. It's kind of like learning to eat all over again. Except we already have the chewing part down. :) After a while though you don't miss the old foods anymore. And will probably find you like eating more wholesome, nutritious foods that make your body happy. Things like steak, potatoes, broccoli, eggs, soups etc. Lots of choices really in whole foods that we can make ourselves.
  2. OK, well that's good Patrisha. The picture seems to show only IgA results. There is also an IgG test they can do. and another one called EMA. So it doesn't look like you had a complete celiac panel. There is a small percentage of people who don't make the IgA antibodies. They are IgA deficient. So IgA tests don't work for them. They would need the IgG and EMA tests instead. IgA deficiency is more common in people with celiac disease. Doctors often run just the IgA tests as a less expensive screening test.
  3. I can't say for sure, but it seems like red ink is usually an indicator of something wrong. You were eating gluten before the testing right? If you weren't eating gluten for the 12 weeks prior to testing your blood the results are not reliable. For the endoscopy you need to eat gluten for at least 2 weeks before.
  4. Hi Webl, The doc needs to take the skin biopsy from next to the DH lesion, not on it. The gastro would do an endoscopy, not a colonoscopy. If it comes to that. But if you are diagnosed with DH via skin biopsy, there is no need for an endoscopy. Endoscopy looks at the small intestine, while colonoscopy looks at the colon. Celiac disease is passed on through genes, so any of your children may have the genes. About 30% of people have at least one of the celiac genes, but only 1 to 3% get celiac disease. You hear different numbers from different sources. So your kids could/may develop celiac disease at some point. Your first degree relatives are at a higher risk for celiac disease. And other AI diseases. There is a section of the forum dedicated to DH where you can find more info on it.
  5. Hi BScott, There are some people who have "silent celiac" which means that don't notice any symptoms. You might be one of those people. Not having symptoms doesn't mean damage to your body isn't happening though. You still need to avoid gluten to avoid the immune system attack on your body. There are many possible symptoms of celiac disease besides gut pain. Hair loss, itchy, dry skin, thyroid problems, joint pain, fatigue, insomnia, nerve damage, lactose intolerance, muscle tremors, depression, anger, anxiety etc, etc... Your chest pressure could be caused by gas. Celiac disease is the one auto-immune condition where we know what triggers the immune response ie gluten. We also know how to prevent the immune response, by following the gluten-free diet. So we can treat ourselves without lots of $$$ drugs. It can be hard to adjust to a gluten-free diet, but it is the only treatment that works. Also, going gluten-free is not an instant cure, it may take months or years for some people to feel better. While others may feel better very quickly. You may notice that things you didn't think were symptoms improve.
  6. Hi Squirrel, Maybe it's time to stop eating fried foods in restaraunts? Some things just aren't worth the risk. There aren't many restaraunts I will eat in. And if I do go to a restaraunt (rare) it is usually the same ones. But I haven't eaten deep-fried food at a restaraunt in many years. Typically restaraunts use the same oil for all fried foods. So even if your fried item doesn't have gluten in it, it will be contaminated by the oil. Some McDonalds use a separate fryer for french fries. When I worked in a restaraunt several decades ago, we had separate fryers for french fries and breaded things. But we also freshened up the fryer oil by frying white bread in them each day. The thinking was that the white bread absorbed off flavors. Great huh? So even if you ordered french fries there, they would have been fried in gluten contaminated oil. In that restaraunt, the 2 fryers were right next to each other. And the fish dryer was the farthest away. So if you were frying fish or mushrooms or whatnot, you had to cross the fish fry basket over the french fryer. Even with separate fryers, there was plenty of contamination happening.
  7. Sorry, I don't have any idea. Some hospitals in the USA let you look at results online. I don't know if the NHS allows that though. I hope they told you that if the blood tests are positive that an endoscopy is the next step in diagnosis. You need to keep eating gluten until all testing is complete. (I have no stock in bread companies) Welcome to the forum!
  8. I think you are on the right track too. Regardless of doctors opinions. you can choose to eat gluten-free if you want to. They may have lots of initials after their names and big bank accounts, but they don't control your diet. It's not unusual for people to continue having symptoms for months after going gluten-free. But don't let that discourage you, it can turn around at any time. A whole foods diet is a good way to go and easier to manage. Avoiding dairy may help symptoms also. The main thing is to stick with the gluten-free diet and avoid cross contamination. You also may want to try some supplements like vitamin D and B complex. Vitamin D is important if you are avoiding dairy. The tooth enamel defect is a classic celiac sign.
  9. Hi Moleface, I think you meant to say you had an endoscopy? A colonoscopy is not used to diagnose celiac disease, but an endoscopy is. Endoscopy looks at the first 5 feet or so of the small intestine. The medical community has an imperfect record for diagnosing celiac disease, They don't get it right sometimes. That is probably why most people with celiac disease don't know they have it. There isn't a lot doctors can do for celiac patients right now. They can do tests for vitamin deficiencies, or bone loss, lactose intolerance or DH. But they don't have any $$$ drugs to treat it. That doesn't keep us from following the gluten-free diet though. We can eat gluten-free regardless of what the doctors say. And that is the most important thing for our health to improve. Some day celiac testing my be much better than today. We can hope so.
  10. Hi Kyle, I found some threads on Thalland by doing a search. https://www.celiac.com/search/?q=thailand&fromCSE=1 and the Phillipines https://www.celiac.com/search/?q=phillipine&fromCSE=1
  11. Hi Sarah, Are you sure the fiber products and other vitamins etc are gluten-free? It's real easy for gluten to get in our diet at first. Everything needs to be checked. Drinks like tea, coffee, etc also. The mucus sounds like an inflammation issue, ie a reaction to something in your diet. All of us are individuals, so what is ok for one person's diet may not be ok for another. Many of us have developed additional food intolerances beyond gluten. Mine are dairy, nightshades, carrots, soy, celery, oats, grapes, strawberries. You can find out your intolerances by doing an elimination diet. It's possible also that you have something different from celiac causing your symptoms. Crohn's or UC or something else. Those conditions may need different treatments. For now the simpler you keep your diet the better. If you only eat 5 foods then it is easier to sort out culprits. Maybe you can switch to a diet of apples, rice, chicken, broccoli, and sweet potatoes. See if that helps your symptoms any. You need to be your own food detective.
  12. Hi Sarahcat, I've had pain and aching in the abdomen before. Some of it sharp pain and some dull aching. But people get a wide range of symptoms with celiac disease. So it's hard to diagnose by symptoms alone.
  13. Hi Sabine, It doesn't really matter if they understand, as long as you protect yourself by not eating their food. Ask yourself how many conditions your friends have that you have really delved into and studied up on to learn all the ins and outs of it? Are you up on all the latest treatments for diabetes? Heart disease? Arthritis? Not many people are, including doctors. Medicine is a huge field of study, that's why doctors often specialize in one area. It's not easy. You are still learning yourself or you wouldn't have gotten sick. We all go through a learning phase where we make mistakes starting the gluten-free diet. But over time we get smarter about it and do better. Our friends may never "get it", but if we do that's the important thing. Holidays can be harder because they are so food centric. I hope your next holiday is better.
  14. Ack!!! Well, it seems typing is one of the things that causes me issues too!
  15. Hi Plumbago. I have trouble swallowing food sometimes. I think that was caused by a vitamin deficiency, maybe B-12 or Vitamin D or both. I take vitamin D supplements to try and keep my levels up. I don't know if my swallowing problem will ever go away completely but it does vary some in severity. I know that it's not sleep apnea but maybe there is a tie-in to it? I had a friend who used a CPAP machine and it took him a while to get used to it. But he did and it helped him. I think using the machine is a lot better option than not breathing.
  16. Hi Peter, Recovery from celiac damage can take quite a while. I had about 5 years of symptoms before I felt like things settled down. Some of that was due to other food intolerances that I didn't know I had, and some due to being stubborn and taking too many risks with the gluten-free diet. Your digestion may never be just like it was before, but it can get a lot better. Dairy is one intolerance that causes me to have bleeding. I have problems with other foods like soy, oats, carrots, celery, nightshades, strawberries, etc. I found out those foods were bad for me by doing an elimination diet. Actually several elimination diets over the years. You might want to try that yourself. Naturemade has a good vitamin D pill. It may be more effective to take a smaller dose like 1000 units daily than mega doses once a week. Sometimes peppermint tea is helpful for gas. Pepto Bismol may help symptoms also. Although it can turn your stool black.
  17. This thread has some discussion about the EMA titer. https://www.celiac.com/forums/topic/66463-endomysial-ab-iga-screen/ Yes, the IGA test sounds high. The lab should provide a results range to match them up against. It only takes one positive antibody to have celiac disease. Although there are different types of antibodies, IgG, IgA etc, all of them can cause damage. The endoscopy is used to confirm damage to the villi lining of the small intestine. She may have trouble digesting dairy also. Lactaid pills or lactaid milk may help that issue. Other people in the family may have or may develop celiac disease also. The genes for celiac are passed down on one or both sides of the family. Having the genes doesn't make you have celiac. But it makes you susceptible to possibly developing celiac at some point in life.
  18. We have members on the forum who don't have the usual gene markers but do have celiac disease. There are also many people walking around with the usual genes who don't have celiac disease. There be more genes that can affect celiac than what we know at the moment. They don't know everythi9ng about celiac disease yet.
  19. Hi Anna, Lots of good advice/comments so far. It seems to me that anxiety or not, you have your head screwed on pretty well. You are taking a thoughtful approach to the symptoms you have, and trying to find a reasonable diet approach to improve them. That's good! I used to have anxiety, but it did go away after a while on the gluten-free diet. It wasn't gone in a few weeks though. It took months to taper off. I am guessing mine was related to vitamin deficiencies. It takes time for the gut to heal and begin absorbing vitamins and minerals efficiently again. Researchers found that it can take 18 months or more in some cases. There are a lot of threads about anxiety on this forum. You can find them by using the little microscope search tool. I don't think your not being hungry is a strange thing. You could be gassy or your digestive flora could be out of whack and make you not feel like eating. Celiac damages the gut lining and upsets the bacterial balance in our guts. That can cause all kinds of symptoms including low seratonin, a chemical that helps us relax. Having a stool change after going gluten-free means there is something digestive happening. Someone who doesn't have a digestive problem with gluten shouldn't notice any big change when stopping eating gluten. NCGI (non-celiac gluten intolerance) is the term for people who have gluten reactions but don't have the gut damage from celiac disease. There are more people with NCGI than people with celiac. And we are glad to help them also. I think it's more likely you have celiac than NCGI though. If you don't want to be tested for celiac and do the gluten challenge that's ok. But to get the full benefit of the gluten-free diet you have to stick to it 100% all the time. Once a celiac eats even a tiny amount of gluten the celiac reaction kicks off and can stay active for weeks or months. I do agree with you that dairy may be causing some of your symptoms too. You can try lactaid milk or pills to see if they help any. Celiac damages the villi that produce the enzyme (lactase) that digests dairy sugar. You can also develop a reaction to casein, protein in cow dairy. Welcome to the forum Anna, i hope you feel better soon! 😍
  20. I agree, it's probably related to improved nutrition. I.E. better absorption of nutrients. My hair didn't turn brown after going gluten-free but my finger nails and toe nails started growing faster. I also used to have a series of little bumps in a line on some nails. Those are gone too.
  21. Hi Audra, I don't know about in children, but adults can certainly have depression and anger, anxiety and other negative feelings with celiac disease. Insomnia is sometimes (perhaps often) a problem also.
  22. Hi, Welcome to the forum! The answer to your question is yes, damage may not be visible to the naked eye but can still exist. I hope her doctor told her to continue eating gluten until the testing is completed. That is important for getting accurate test results.
  23. It can be celiac because 84% of the people with celiac disease in the USA are not diagnosed. If celiac disease caused us all to break out in purple and yellow stripes it would be easy to identify. But it doesn't and instead presents with a a multitude of varying symptoms for different people. You had a positive on one antibody test already. That's all it takes for damage to occur. The antibodies job is to do damage, and they are good at it. The endoscopy is used to confirm that villi damage is occurring. But you could be having antibody damage to the skin, nerves, joints, liver, brain, thyroid, or some other organ instead. Celiac testing is not perfect. Maybe someday they will have tests that detect a 100% of celiacs right away. But that hasn't happened yet. You can wait for your damage to get bad enough for current testing to find it. Or you can go gluten-free and stop hurting yourself. Or go find a different doctor to review all the testing that was done. Get a second opinion. Maybe check with some local celiacs on who a good doctor is. But the reality is that some ,people just don't test well. It sucks, but there it is.
  24. Hi, Just to clarify terms a little. An endoscopy is used to check for celiac type damage to the small intestine. A colonoscopy is done to check for diseases or damage to the large intestine. The colonoscopy is not used to test for celiac disease. So it makes a difference which was done. Sometimes a gastroenterologist will do both an endoscopy and colonoscopy during the same procedure though. Skin samples are taken to diagnose DH (dermatitis herpetiformis). DH is an itchy rash that tends to appear on both sides of the body, on both elbows, knees, etc. Only people with celiac disease get DH. Symptoms of celiac disease vary widely among people. Some people have no symptoms but still have celiac. So going just by symptoms doens't work. They have to do testing on the blood antibodies and the endoscopy. There's a gotcha though. People with DH are less likely to show a positive on the blood antibodies.
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