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  2. I thought I would update you all. I started to eat gluten shortly after this post. I was miserable by the time I had my EGD. The doctor gave a diagnosis after the EGD was completed, duodenitis, gastritis and hiatal hernia. I had abnormal mucosa of the whole stomach and severe inflammation. The biopsy results came back today, they stated early stages celiac disease. I wonder what it would've shown if I wasn't on a gluten free diet for two years? My doctor said he still wants me to come in for a talk, he doesn't really know if he should call it celiac disease since it's early stages.... WTH! I've really got to find a doctor that specializes in Celiac Disease...
  3. thank you for the info, its very helpful to hear from someone else who has it and knows a lot about it. When you say I may be eliminating one problem vs 3, what would you think the other problems could be? It's frustrating because I even buy Uldis gluten-free bagels and what not and I still find myself reacting sometimes to that, I don't use butter but just gluten-free peanut butter, but like I said I don't know for sure if its from that or maybe something else. I have read on this site about a couple others that have had issues with uldis breads so could be that. but like you said I guess it can also just take awhile to get better. I read the other day that a lot of throwing up can put stress on your small intestine which can maybe cause your body to react to dairy, do you know anything about that or if that's true?
  4. Thanks for the reply! Yeah, I really should have gotten testing done before the elimination diet. I had asked my previous doctor, but she didn't want to do it. I was transitioning to a new insurance and couldn't get a doctor's appointment for awhile, so I thought I would just do the elimination diet. After all, it might not have been gluten. (<--that was my thought process...) Hindsight is 20/20. I felt pretty good during those 3 weeks gluten free, and was not expecting how bad it would be when I added it back in. Anyway, I found a new doctor and I think she would totally be willing to test me again 9 weeks out. I think she would also be willing to order the endoscopy if I brought her research and really pushed for it. Now that I know how good feeling good feels... I just can't see staying on gluten for another 9 weeks. I honestly don't know how I would survive. Even if it's not Celiac, and it's ONLY the wheat allergy... it's making my life absolutely miserable. Thanks again for the reply! I think I'll go in Friday for the blood test and take it from there.
  5. Today
  6. Hi Alok, I suggest not eating any soy. Soy is one of the top 8 food allergens in the USA. Soy has other things about it that are not helpful to us. Plus it is often sprayed with pesticides that are not so great for people. Maybe you can try some other food for a while? Also it might help to wash all your vegetables before using them. Just some ideas, I hope they help.
  7. What she said! The antibody panel is an important part of follow-up!
  8. I have Celiac, Hashi's thyroid disease, Sjogren's Syndrome and Reynaud's Syndrome. All have gotten better, inflammation wise, after 11 years gluten free. I am very strict with my diet, never take chances if I feel the food is not really gluten free and limit the number of times I go out to eat. I am not saying I never go out but it is normal for my husband and I to not see the inside of a restaurant for 3-4 months at a time and then I only eat at the places that have never glutened me. I am lucky in that the state I live in has 3 restaurant chains that are run/owned by Celiac's, so they get it right every time. You have not been gluten free for very long, in reality. It took me three years to completely rid myself of all symptoms related to the disease. I was 46 at the time of diagnosis. I know it is hard to accept that healing can take that long but you have to measure it differently. Looking back, you should feel better than you did a year ago. As time goes on, healing slowly takes place until you realize that certain problems have disappeared. It is not as cut and dried as taking an antibiotic for an infection. http://www.drweil.com/drw/u/ART03424/Elevated-Creactive-Protein-CRP.html Read this article on elevated c reactive protein. It is by Dr. Weil, who is a Harvard trained physician who chose to go the more natural route to healing people. All his stuff is interesting. Yes, your elevated level will most likely come down, as you heal better. Pay attention to it but don't let it freak you out too much!
  9. Hi Calla, I think the safe answer is 12 weeks on gluten for a blood test. I am pretty sure they say 2 weeks on gluten for the gut endoscopy. But usually people/doctors don't want to do an endoscopy before a positive blood test, so catch 22 there. There's a chance you still have active antibodies in your blood after 3 weeks off gluten. But nobody can tell you for sure. If you can get you doctor to test you now and in 9 more weeks if you are negative now, that might work. If the doctor is willing to do 2 tests, that would be great. The best thing would have been to do all celiac disease testing before going gluten-free. But sometimes it doesn't work out that way. The University of Chicago celiac center has an FAQ that answers some of your questions. http://www.cureceliacdisease.org/faq/i-dont-have-the-money-to-get-tested-for-celiac-disease-but-a-gluten-free-diet-makes-me-feel-better-is-it-okay-to-start-the-diet-without-being-diagnosed/ Welcome to the forum!
  10. Couldn't have said it better!
  11. If you are going for an endoscopy, then please ask for a celiac antibodies COMPLETE panel. This will help you determine if you have been diet compliant (zapped by hidden sources of gluten or accidental cross contamination) and if your doctor misses the (possible) damaged areas during the procedure. That way you can rule out celiac disease and THEN worry about the possibility of other AI issues. I did this last summer. I got really sick. My GI thought SIBO right off the bat. But I asked just to be tested for celiac disease. Sure enough, I had elevated antibodies. No need to test for SIBO or anything else at that point. I just waited a few months for symptoms to subside. Good Luck to you!
  12. That's good Megan, that you were tested. Many people have the genes, but only some develop the disease. Your doctor is right about celiac often appearing after some kind of physical stress or illness. The tricky thing about eliminating one food is that you body may be reacting to multiple foods. So not getting better could mean you just eliminated one problem instead of 3. It's not unusual to have digestion issues for quite a while after going gluten-free. Our guts are damaged and that damage has to heal. But it can't heal until the immune system stops it's attack. The immune system attack/reaction can keep going for weeks to months. So it can be a slow recovery. Often people report getting better and then getting worse and going back and forth on symptoms. What doesn't help is that our bacteria in our guts can get really screwed up by the disease process. We can't properly digest things so there is more undigested food for bacteria to thrive on. Avoiding sugars and carbs can help with that issue. Here are some starting the gluten-free diet tips for the first 6 months. Some of these you have already taken care of: Get tested before starting the gluten-free diet. Get your vitamin/mineral levels tested also. Don't eat in restaurants Eat only whole foods not processed foods. Eat only food you cook yourself, think simple foods, not gourmet meals. Take probiotics. Take gluten-free vitamins. Take digestive enzymes. Avoid dairy if it causes symptoms. Avoid sugars and starchy foods. They can cause bloating. Avoid alcohol. Watch out for cross contamination. Helpful threads: FAQ Celiac com http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/ Newbie Info 101 http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/
  13. yes, I was tested for it. They said after stomach surgeries and other major things causing that much stress on your body you can become intolerant to gluten. It happened to my aunt as well who was in a horrible car accident. They said you can always carry the gene in your body and having that much stress on your body can start it.
  14. A new study confirms a link between intestinal viral infections and celiac disease. View the full article
  15. Good luck with all the testing. You are doing the right thing by telling your son to gluten up! Buy him one of those gluteny cakes at a bakery...if that doesn't spike his numbers, nothing will.
  16. Thank you for this response! You are right, I'm sure. My sed rate was normal. My c reactive protein was 6, which is high. My platelets were a bit elevated and I was slightly anemic. I am going tomorrow for another endoscopy. I know that these things could be related to other things... but I'm thinking there is a change they are all still related to celiac (I'm hoping). What other autoimmune disease do you have, if you don't mind me asking?
  17. HIV doesn't turn off the immune system, it destroys it to the point where most people die from complications that arise from having no immune system. Some end up with pneumonia or cancer, which takes their life. It is pretty amazing the treatments they have developed for it, to slow it down and give people longer, quality time. I am perfectly content with the gluten free diet as my treatment and honestly, if they developed a pill that they claimed would make it possible for people to eat gluten again, I doubt I would. I could not bring myself to eat a food that I am genetically programmed to not be able to digest and that totally pisses off my immune system. However, if they succeed with some of the meds they are working on now, one of which I posted about earlier this summer, I would take those. They are working on things that modulate the immune system down so inflammation can be tamed down further. Even with a strict gluten-free diet, there will always be more inflammation for us than for those who don't have AI diseases. I do everything possible to tame it down myself but it isn't in the normal range.....yet. Long term inflammation can kill you so something along those lines would be welcome. You would still have to eat gluten-free but the disease activity would be calmed down. This is a drug that targets those with lupus and maybe Sjogren's....which I have. There are possibilities for other AI diseases from that!
  18. Hi Anns and welcome Do you think that I am on the right course to see if I possibly have Celiac? Yes, it was smart of you to consider the possibility and its good that you've had the tests. Both the aneamia and bloating are symptoms, although of course they may be unrelated. Best way to find out is to check as you are doing. Can this develope later in life ( I'm 46)? Yes, I think its most common discovered later rather than sooner. I ate a meal last night that was gluten free and did not feel like nearly as bloated after eating, would I notice a change that quickly? Thanksort for your input. Yes, I noticed far less of a heavy feeling after eating very soon after diet changes. However you would be better off not trying gluten free just yet. I collected some links and other stuff here, it may be of use: Your best bet is to eat as normal and wait for the test results. If your doctors eliminate celiac there's nothing to stop you excluding gluten at that point to see if it helps. But before then you need to keep eating it to ensure an accurate diagnosis. All the best
  19. Well HIV undermines the entire immune system as I understand it, so that would be akin to using dynamite to put out a kitchen fire! There is some work going on to try and retrain the immune system to not see gluten as a threat though: http://www.immusant.com/docs/ImmusanT DDW Data Release FINAL 5.24.16.pdf I'm laughing as I write this imagining the conversations you could have with people as you tell them you'd like to contract HIV so that you can eat a decent sandwich
  20. So, I have just yesterday had blood work done to test for Celiac so I am waiting on my results. This was prompted when my Dr discovered that I was severely anemic and after other testing sent me to Hematology. I actually inquired if I could possibly have a gluten sensitive because of the anemia (which has improved with an iron supplement) and feeling bloated after eating and well most of the time actually and after some research I found that this could be a sign that of a gluten sensitivity. The Hematology Dr also recommend an upper GI. Do you think that I am on the right course to see if I possibly have Celiac? Can this develope later in life ( I'm 46)? I ate a meal last night that was gluten free and did not feel like nearly as bloated after eating, would I notice a change that quickly? Thanksort for your input. ANN
  21. I work with somebody that works closely with Subway UK and head office. They are starting to roll out gluten free bread in some flagship stores, however most franchises do not currently stock this. They have advised that you navigate to https://www.subway.com/en-us/contactus/contactusform and specify which store is not currently stocking, noting your dissatisfaction. Subway will then take steps to ensure that the store is brought up to speed. Hope this helps! Joz.
  22. Yes, the first time you use gluten free flours, it feels like a challenge. ... of a gluten-free living after her elder kid was diagnosed with Celiac Disease. View the full article
  23. I figured I would update those who were wondering. I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then. My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way. Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all! So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free! The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids! My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
  24. I like your plan Cara, I may have to include it in my sons. Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home.
  25. Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful.
  26. Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV. obviously that's way worse than celiac. Just some food for thought.
  27. Well, you can probably get an apple or something. You might be able to get someone to boil you some eggs. But be careful of things like nuts that should be naturally gluten free. They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives. If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables. But even so, you must monitor it carefully. The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added. To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it. Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful. Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.
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