cyclinglady

Why not start start a new posting? We could used updated refractory celiac disease advice.

Are you talking about the TTG IgA and the TTG IgG tests for celiac disease? Are you talking about Immunoglobulin A and G results? I am confused. If you just had the two TTG versions, you could ask for the two DGP versions and the EMA. The TTG test do not catch all celiacs. Are you IgA deficient? Ask for an Immunoglobulin A test. Some celiacs are seronegative. Keep that in mind.

I agree with GFinDC! My endoscopy revealed nothing, but my biopsies showed significant damage. Let’s hope he took enough samples in the small intestine. I would seek another opinion if the pathologist’s report does not find celiac disease. Something is wrong! My niece had celiac disease firmly ruled out. Her 4th GI ordered a pill camera. It caught her Crohn’s Disease located beyond the reach of both scopes and countless other tests. She did not present with standard Crohn’s symptoms either. Not saying your DD has Crohn’s, but again, something is wrong. Keep advocating for her health!

I am not a doctor, but the celiac blood tests, the endoscopy and the biopsies did not reveal celiac disease. Could they have missed damage in small intestine? Maybe. You could ask for the rest of the celiac panel which includes the TTG IgG, DGP IgA and the EMA. Or find out the cause of your ulcer-like erosions (e.g. taking too many NSAIDS). I hope you figure it out.

I had a bread machine years ago. It was nice to have bread ready to go in the morning. Later, I tossed it. I like kneading bread. It was relaxing and gave me a good work out. Gluten free yeast bread does not require kneading. Just time to rise. An electric mixer or your arm can handle the initial mixing. Let it rise and then bake! My machine was well used. I do not think I could have salvaged it .

We have been on Carnival and had successful trips -- no glutenings! Royal Caribbean was terrific too (several times). We took extra precautions though. 1. We notified the cruise line when we booked the tickets and confirmed again just prior to departure. 2. When boarding the first day, usually the buffet is open only. I meet with the head waiter, introduce myself and family and explain our needs (I carry a note from my GI). Gluten free items are obtained from the back kitchens of the ship where the allergy section is located. We NEVER go through the buffet line. They personally send staff down a few floors to get us safe food. We ask that it only be gluten free. We do not care what they bring to us. We eat it thankfully. We do take fruit from the buffet (wash it in the restroom) and drink coffee. 3. After that, we never eat anywhere but the main dining room for breakfast, lunch or dinner. On the first night, we ask for a quick tour of the allergy section of the kitchen to meet staff and the chef responsible. We only talk to the head waiter every single time we enter the dining room. We go to him or her. If the ship does not have arranged seating, we might end up with a different waiter, so knowing the head waiter is critical. We get to know staff on a first name basis. Each morning the headwaiter offered gluten-free waffles, French toast, etc. for his celiac families. I was never hungry. Heck, I ordered two appetizers every night! 4. In the past, we had one head waiter send daily packages of individually packaged gluten-free crackers, cookies, bread and whole fruit to keep in our room for snacks. Was it the best? Udi's, but it was safe! Room service is not safe for celiacs per our headwaiters. We only ordered coffee each morning in our room. 5. We brought food with us in case we could not find safe food at port. We also brought printed celiac travel cards in many languages. We brought food on day excursions or found a market. It all depends on the country. 6. We tipped very well! We have even tipped in advance on the first night (head waiter and waiter). We were gracious. We wrote glowing letters to corporate and named our excellent staff. Have fun, but it is up to you to be assertive.

I use Gabriel’s lipsticks. I love them!

Hang in there!

TTG IgA TTG IgG DGP IgA DGP IgG EMA Why the complete panel? Researchers thought the best test a few years ago was the TTG. Great test, but does not catch all celiacs (like me, others like me, and small children). Some celiacs are seronegative. Some might be Immunoglobulin A deficient (IgA). http://www.cureceliacdisease.org/screening/

This happens to SOOOO many people. Even many doctors get this wrong and fail to tell their patients that they need to remain on gluten for testing. Once you feel good after getting off gluten, it can be hard to go back on for testing. Do not let your doctor persuade you into not testing because you are overweight. That is an old fallacy. Celiacs come in shapes and sizes. You should consider wheat allergy testing too (different from celiac disease) as people can have both. If testing is negative, consider trying the gluten free diet again. It sounds like you have already felt some improvement.

Hi! If you are considering getting tested for celiac disease next week, you do need to get back on gluten right away. All celiac disease testing requires you to be on a full gluten diet. In as little as two weeks antibodies in the blood stream might decrease in some people. The problem is you do not know if you are a fast healer or not. Then you would receive a negative result when you might actually have celiac disease. I hope you feel better soon!

You are fortunate that your doctor referred you to a Gastroenterologist. I am sorry to tell you that I presented only with anemia. That is it. No gut issues at all. As far as damage, only the biopsies can reveal that. The antibodies tests can not really measure intestinal damage. My blood test result was moderate, but my damage was moderate to severe per my biopsies. You are young and will probably heal fast if you learn the gluten free diet well! Keep us posted.

Hi! I am not sure I read the results properly. In 2018, you tested normal for all the celiac tests except for the DGP IgG? If yes, it could be just an error. The antibodies tests for celiac disease were designed to help diagnose celiac disease and not really for monitoring diet. Why do doctors order them? There are not any other tests. So they are better than nothing and certainly less invasive than ordering an endoscopy each year. You could wait a few month and then repeat the test. Are you experiencing symptoms or are you (and were) a “silent” celiac? If you are doing well, again this test result might just an error. If you are not well, then you might want to talk to your GI and think about taking a look (endoscopy/biopsies) internally. If you have not had a repeat endoscopy, it might be nice to know if you have healed completely and without doubt.

Hi! Your posting was overlooked (we are all volunteers). I am so sorry. Just want to find out if you received a diagnosis and if you are doing okay.

Hi! I am so sorry that you are dealing with refractory celiac disease. You are fortunate to have access to a celiac expert! Recently, there was a mother who was searching for members who are also dealing with refractory celiac disease. You might try contacting her using the private message feature on the forum. Here is a link to her original posting: https://www.celiac.com/forums/topic/109854-searching-for-refractory-friends/?tab=comments#comment-996063 If you do not mind what kind of autoimmune attack occurred? I personally had issues last year after a gluten exposure (unknown source), tooth infection, a cold and the flu all within a month. I struggled with lingering gut issues, elevated antibodies (DGP and thyroid) and daily hives. I tried the Fasano diet (with my doctor’s support) but did not get well. Had a repeat endoscopy. My villi had healed, but I had autoimmune gastritis which, like my thyroid, I have not control over them. Hopefully, some of the new drugs being developed will be available soon. http://www.thepatientceliac.com/2015/11/27/interleukin-15-and-celiac-disease/ I wish you well!