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Everything posted by GFinDC

  1. 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.
  2. Hi LFA1, The Medicheck labs look ok, but I don't see total serum IgA listed. Total serum IgA is needed to verify the patient actually is capable of making IgA antibodies. If the person can't make IgA antibodies then the IgA anti-gliaden tests are invalid. You should definitely not go gluten-free until all testing is completed. If you did go gluten-free now you antibodies would start declining and the testing would not be accurate. Your gastro is faulty in the celiac realm. Can you search on the web for a celiac support group in your area? If you find one they maybe able to suggest a good gastro doc for you. There is a UK coeliac forum online.
  3. Hi Amber Kay, Your itchy hives could be DH (dermatitis herpetiformis). You can read up on DH in the DH section of the forum. You will find tips for how to deal with it there that might help you. https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/
  4. Hi Monica, You may have celiac disease. Your description of your symptoms certainly matches. To be tested they have you eat a small amount of gluten for 12 weeks before the blood antibodies testing. And 2 to 4 weeks for the endoscopy test. During the endoscopy they take 4 to 6 biopsy samples of the small intestine inner lining. They check those biopsies for evidence of typical celiac disease damage. There are a couple other tests that can be done. One is a genetic test to see if you have the genes for celiac disease. The gene test doesn't prove a person has celiac though, it only shows they can develop it. The other test is for DH (Dermatitis Herpetiformis). DH is an itchy skin rash that only people with celiac disease get. They take a skin biopsy to test for it. When a person has celiac disease they can have damage to the small intestine. The small intestine is where food is broken down and absorbed into the blood stream. So when it's damaged we can't absorb nutrients like vitamins and minerals efficiently. So people can develop vitamin/mineral deficiencies. Celiac disease is an auto-immune condition. So even a tiny amount of gluten can cause a reaction. Instead of attacking a microscopic germ the immune system attacks our own body when it sees gluten. You know germs are small, but the immune system reacts to them. That's why a little tiny bit of gluten on your pepperoni can cause symptoms. Or sharing a peanut butter jar with a gluten eater, or mayo jar etc. We call that cross contamination.
  5. Wow, it's good you got away from him then!
  6. Hi Brandi, Lots of people on the forum have had sleep issues relating to celiac disease. You can search for insomnia and find threads about it. Celiac damage can cause mal-absorption of nutrients. When our bodies don't have enough minerals and vitamins things can get pretty wonky. Some us of even get grouchy. Poor sleep may be related to that. Hopefully those sleep symptoms will resolve in time as your gut heals and begins absorbing nutrients better. B vitamins and magnesium are often suggested as possible helps for sleep issues. The B vitamins can help nerves work better and magnesium helps our muscles relax. Another possible help is vitamin D. It can help your recovery if you avoid all sugar and dairy. Dairy can have a tendency to keep people awake. Sugar and carby foods (white rice, white potatoes etc) can cause bacteria overgrowth and gas. I hope you feel better soon!
  7. Hi, They test for DH by taking a small skin biopsy from clear skin next to a lesion. A dermatologist is the person to go to. Don't have him quit eating gluten until all testing is done though. He needs to eat enough gluten each day to keep the antibodies active. A half slice of regular wheat bread should to it.
  8. Hi, First off, get a new doctor. One that isn't so stupid. The gluten challenge is 2 to 4 weeks for the endoscopy test. The blood antibodies tests require a 12 week gluten challenge. Second though, there is an extremely itchy rash called DH (dermatitis herpetiformis) that some celiacs get. The testing for DH is to take a small skin biopsy sample from clear skin next to a lesion. People with DH tend to fail the blood tests so the skin biopsy is the way to go. There is a section of the forum for DH that has more info. You can try searching for celiac support in your area. If you can find a support group or just another celiac they may help with doctor suggestions. The doctors section of the forum has some ideas too. Also, I agree with Scott. You don't need to get a firm diagnosis and it may be a bad idea in your case. DH can get very bad and take months to get over. You may find that your rash doesn't disappear for months after stopping gluten next time.
  9. It's a good idea to check with the seller of the turkey on the gluten status. Glaze packets in the USA are usually not a problem as you can simply throw them away.
  10. Finally Got Tested

    Hi, you posted a blog, You are more likely to get responses by posting a thread in the forum section. https://www.celiac.com/forums/forum/13-celiac-disease-pre-diagnosis-testing-amp-symptoms/
  11. Vertigo spells lately

    https://www.celiac.com/search/?q=vertigo&fromCSE=1 I suggest reviewing some of the threads in this search link. I think you'll agree the answer is "Yes, people can have vertigo as a celiac symptom". It sure doens't sound like any fun to me.
  12. Did you get a copy of your antibody tests results that you can share? There are ranges for each test that vary by lab. Sometimes doctors only do a couple of the screening tests and don't do the full blood tests with all the different antibodies. And sometimes people are IgA deficient and none of the IgA tests are valid because of that. You should have gotten these antibody tests: DGP IgA DGP IgG TTG IgA Serum IgA EMA Not everyone is positive on the blood antibody tests even if they have celiac disease. And if you weren't eating gluten for the 12 weeks prior to the tests they aren't valid.
  13. Brand new

    Hi, Celiac disease is an auto-immune condition. So you should be aware that even a tiny amount of gluten can cause the reaction to flare. And because the immune system is serious about it's job, the reaction can keep going for weeks to months. So we need to be careful about avoiding cross-contamination as happens in shared peanut butter jars, mayo, toasters, etc. There is also the possibility that immediate family members may develop celiac or already have it. There are a couple of genes that trigger celiac so anyone with the genes is a candidate. The genes don't make you get celiac, but make it more likely to get it. The celiac genes are also associated with other AI diseases.
  14. Hi, You only have to be positive on 1 antibody test to have celiac disease. One kind of immune cell attacking your gut can do plenty of damage. They are powerful little buggers! People don't get over celiac disease, although that was thought to be true in the past. What does happen is sometimes a person's immune system will take a break from attacking for an while. That doesn't last forever though and at some point the immune attack will resume. The same thing happens in other AI diseases at times. That resumption of symptoms is sometimes called a "flare-up" in other conditions. If you are unsure of your diagnosis, then get the endoscopy done. But don't stop eating gluten until the endoscopy is complete. The GI will generally take from 4 to 6 biopsy samples of the small intestine for microscopic examination. There is some info in the Newbie 101 thread posted in the Coping With section that may help.
  15. Something doesn't make sense here. The process for a gluten challenge is to eat gluten every day for 12 weeks before the blood tests and 2 to 4 weeks before and endoscopy. Not eating gluten before the testing is the wrong thing to do. The celiac testing depends on the antibodies being active and at detectable levels. So you should eat at least a small amount of gluten each day to keep the antibodies active. It's good that you are feeling better but your endoscopy is not going to be reliable if you aren't eating gluten. You may want to double check with the doctor on how much gluten you should eat each day.
  16. What you need to know is that going back on gluten for a gluten challenge is often worse than not going off it at all. His symptoms and pain will probably be worse later than they are now. Many people don't complete the gluten challenge because of this. So, it isn't something that I would suggest doing later. Doctors often don't consider this aspect of celiac testing and will tell people to go ahead and go gluten free before testing is completed. Then people don't get a diagnosis at all because they can't complete the gluten challenge. If he is really sick then I agree, take him off gluten. But don't put him back on it for another 10 years or so. By then he will probably have made enough mistakes and eaten gluten by accident enough times to know how it affects his body. The other negative thing that sometimes happens when people go back on gluten is they can develop additional food intolerances or even additional AI diseases. AI diseases like to "cluster" and celiac is associated with many other AI conditions. It's not worth the risk IMHO to do a gluten challenge. Just as an example I can't eat nightshades, dairy, soy, carrots, celery, raisins/grapes, coffee. Probably some others I am forgetting right now. Some of the forum members have multiple AI conditions. Thyroid diseases, skin conditions (DH), Sjogrens, arthritis, etc. People with celiac in the family may have relatives with these AI conditions also. Other wise it's all a lot of fun! :) It sounds bad but once a person gets used to eating gluten-free it is not that bad. We can adjust to lots of things.
  17. Ok, if he isn't eating any gluten for the 2 weeks before the endoscopy, there is a chance he won't show a positive result. So you may as well prepare yourself for that possibility. Since the PED suggested he go gluten free now, maybe he can assist in getting an immediate GI appointment so the test will be valid? If not the endoscopy may be a waste of money and time IMHO. If he is too sick to eat the small amount of gluten needed for the test, then you may have to go without a formal diagnosis.
  18. Hi, It's important to keep him eating at least some small amount of gluten daily until all the testing is completed. The testing usually includes an endoscopy to take 4 to 6 biopsy samples of the small intestine lining. Those biopsy sample are checked for damage characteristic of celiac disease. You might find he does better if you take him off dairy for a while. Celiac damage makes it hard to digest dairy sugar (lactose). Some probiotics may help. I'd suggest Pepto Bismol for symptoms but they say not to give it to young children. But he can try peppermint Altoids for bloating . And also avoid all sugar and carby foods like white rice or white potatoes. Those tend to cause lots of gas in the gut and that can cause pain.
  19. Hi Chris, It sounds like celiac to me. It is worth staying gluten and doing the endoscopy / colonoscopy before going gluten-free. Right now before you go gluten-free is the best chance of being diagnosed correctly. Going off gluten reduces the antibodies the tests measure and causes inaccurate results. The endoscopy is important because they take 4 to 6 biopsy samples of the small intestine lining. They check those samples for damage characteristic of celiac disease. You can reduce the amount of gluten in the meantime to something like one slice of regular bread a day. That should be plenty to keep the antibodies active. You could also cut of all dairy for a while and see if that helps your symptoms. Celiac damage makes it hard to digest milk sugar in dairy.
  20. Hi Breaux! Welcome to the forum! I hope you enjoy your time here and can learn some helpful things. There is a sticky thread in the Coping With Celiac forum section called Newbie 101 that has some tips for you.i Other than that we generally suggest people stick to whole foods for at least a few months and avoid dairy. Eating out in restaurants is a bad idea for a beginner also. There's a few other things to learn about celiac disease so feel free to ask questions. Someone may have a good answer!
  21. You should be ok with most canned veggies if they don't have gluten ingredients.
  22. Hi Hannah, Your symptoms could be related to celiac disease, or something else. One way to find out is to stay strictly gluten-free and see if they go away. I'm guessing you got the usual doctor's advice to go gluten-free. The truth is it is much more involved than just saying that. You need to spend some time learning what gluten is and where it hides in foods. And how to avoid cross-contamination too. These are things people tend to learn in the first 6 months of the gluten-free diet. Getting better goes faster if you eliminate all gluten from your diet. That is easiest if you stop eating out at restaurants. And also stop eating processed foods. Simple, whole foods are your friend when healing.
  23. Another thing that is often low for a celiac is Vitamin D. Might be good to ask the doc what your levels are.
  24. Day 7 of gluten-free

    It's much simpler to stick with whole foods, or at least foods with 3 ingredients or less. You don't have to spend all your shopping time reading labels that way. After 6 months gluten-free or so is a good time to start expanding your diet choices.
  25. Day 9 of gluten-free

    Hmm. Did the Japanese steak house have a gluten-free menu? Do they cook their gluten-free steaks on a cleaned surface or the same surface as gluteny foods? How about the spices they put on the food? Are they gluten-free also? Another worthwhile question, do they even know what gluten is? Any wheat, rye or barley or derivative such as malt? Do they marinate their steaks in a gluteny mixture? All these are good reasons not to eat out when starting the gluten-free diet.
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