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Brooklyn528

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Brooklyn528 last won the day on September 18 2014

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About Brooklyn528

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    My family, friends, and the enjoyment of life!
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    Indiana

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  1. Hello! My LFT's were also elevated at diagnosis, but mine were in the 200's range. Slight elevations in LFT's like the numbers you have are related to Celiac Disease. Mine were way above that though. If they get to that range, it is no longer being caused by celiac disease and further testing is warranted. You are at higher risk of getting Autoimmune Hepatitis when you have Celiac Disease. This is what I was diagnosed with in September after my liver enzymes soared to 400. I'm just wanting to make sure you know this also. Keep up on the blood work. Hope they stay only slightly elevated!

    Brooklyn


  2. I just got some oats that I need to try. Does anyone have a good gluten-free recipe for oatmeal raisin cookies that I could try them with? I think they are Cream Hill Estates. They are certified gluten-free. Grown in specific fields and such. Anyways, Like I said on a hunt for a good recipe. I have a pitch-in lunch for my newly started celiac disease support group on sunday. I am going to be baking all weekend.

    Brooklyn


  3. Hi, I have started a Celiac support group in my area. It will include anybody willing to drive to Brazil, Indiana for meetings. We will be having them monthly at least. The first meeting will be this Sunday at St. Vincent Clay Hospital, in Brazil. It will be in the Medical office building on the hospital campus. The hospital in located on the north side of highway 40 in Brazil. Please contact me if you would like to come. The meeting will be informal. It is also a pitch in, so plan on bringing your favorite dish to share with others. Ingredient lists will be greatly appreciated. Anyways, like I said, contact me if you would like to attend. The meeting will be from 2pm-5pm. Hope to hear from some people on here that are close enough to come! I am very excited for it.

    Thanks,

    Brooklyn


  4. Hello. When I went to the CSA conference this year, Dr. Robert Greene, the foremost thinker and researcher on celiac disease from Columbia University, said that we could quote him on this. Any alcohol that has been through the distillery process except beers and ales is gluten free! So drink what you want. That is one thing celiac disease hasn't taken from us yet.

    Hope to help,

    Brooklyn


  5. Fiddle Faddle- Hello. If you notice in my first post, I state that he is not very intune. He is an older GI and he is foriegn. He won't be the doctor I follow up with after I get the biopsy results. My boyfriend and I saw a different GI for my son. He was a younger doctor, knowlegable in celiac disease. He is having us do an elimination diet with my son. He doesn't have positive bloodwork just some symptoms.I will follow up with him for my daughter also. I said flat out to the doctor that saw my daughter that IBS does not cause antibody production after he suggested this diagnosis. Then, I asked him what other than celiac disease would cause that kind of antibody production. This is when he said that he would need to do an EGD to confirm celiac disease or IBS. I had a feeling at that point in time that my grandmother who was also there and looking at him like he was crazy knew more about celiac disease than he did. The only real reason I was apt to do the EGD is that she has had symptoms for a couple years. So, there very well could be damage. Thanks for your advice and backing me up that he is an ignorant doctor. Every once in a while when everyone else thinks your crazy you need a little encouragement from somewhere.

    Seezee- I am not in New York. I live in Indiana. My name is Brooklyn. About the Columbia Center though, you have to know about Dr. Greene if you go there. I went to the CSA conference this year in Erie, PA. He was one of the speakers. I actually had a chance to chat with him about my family history and my children after he spoke. He suggested getting the EGD done also. He said that it would be more beneficial than harmful because of the ease of the procedure.

    I think I'm going to ta


  6. Hello Everyone!

    Just wanted to update you on how my little trooper did yesterday. She was soo worried all the way up there. She didn't want to have to get any shots or IVs. I told her that she might not have to. We got there and the nurses and staff were all wonderful. They got her vitals and history kept her laughing the whole time. Then, the nurse gave me some gowns to change her into. They were super long. She said they were princess ones though. Then, they had one of the volunteers on the hall play board games with her until she went back. I was glad to know that they would give her some laughing gas to fall asleep, then do her IV. That was really the only thing that bothered her when she got back to the room. I held her and put my feet up in a big recliner. We slept there for about an hour. Then, we were being released and on our way home. It was a lot quicker of a process than I thought it would be. Of course, the doctor came in and said that it looked ok to him. He took two duodenal biopsies and one stomach biopsy. I will get results back in 10-14 days, and I am on pins and needles about them already. Thanks for all the prayers and well wishes.

    Brooklyn


  7. Hello Everyone!

    Well, after two months of having bloodwork showing positive IgG antibodies, my daughter is getting a scope tomorrow to do biopsy to check for damage. She has both DQ2 and 8 with the possible silent Celiac mutation. The GI we saw for her was not very intune with Celiac. He suggested that we are doing the scope to to rule out Celiac because he thinks it's IBS. I just agreed because either way we will know what is going on. IBS does not cause antibody production. I was just wondering if anybody has any advice on how it will go or what to expect when we get home. I know that she is gonna be sleepy and not want to do much. I am going to rent some new releases, and I got her a new Christmas coloring book. Have any kids had nausea with certain food or anything like that? Thats about all I can come up with, but any advice would be much appreciated.

    Thanks in advance,

    Brooklyn


  8. You might need some more fiber. Try a supplement like Benefiber or Metamucil. You can get the store brands which are cheaper but work the exact same way. Also, try the above suggestion. Maybe have your GI or PCP check your vitamin levels also. You might still be deficient.

    Hope to help,

    Brooklyn


  9. About the AIH, You can have you PCP check your liver enzymes(LFT's) and your ANA level. These are the tests that are used to diagnose AIH. If your liver enzymes are normal, then it's not AIH. I am on two different meds to control my AIH and to try to get me into remission(AIH is a chronic condition, there is no cure, but lots of people do fine after treatment). The first drug that they put me on was Prednisone. This is used to stop your immune system completely so it stops doing damage. The second drug they put me on was Imuran. This is the maintenance drug. After you start Imuran, then they begin to taper your dose of Prednisone until you are on the lowest dose possible. Some people can go off of both drugs and stay in remission, but some have to be on the drugs lifelong. The Prednisone starts alleviating symptoms almost immediatly.

    Hope to be of some help,

    Brooklyn


  10. Hello. About the wines, you have to watch out on those. Alot of them have gluten in them. I went to the Celiac Sprue Association's Annual Conference and saw Dr. Robert Greene speak. He is one of the foremost doctors in researching celiac disease. From his mouth, All Alcohol is ok because it is distilled so the gluten is lost in the distilling process. That's about all I can add. I love Malibu and Pineapple juice or Stoli Vodka and Sprite. Both do not taste badly of alcohol.

    Hope to be of help,

    Brooklyn


  11. Hello girls! I am also 24 and I was diagnosed in January of this year. First off, some food suggestions. Kinnikinnick breads, rolls, and muffins are great and can be ordered online. After you order, they bake to your request and mail same day. Always put it straight into the freezer. The Betty Crocker mixes are great. Trix cereal is gluten free. Honey nut chex are really good. Walmart and Kroger now have packaging that says gluten free. Kroger has a list of the things that aren't marked with gluten free on their website. If it doesn't say wheat in the contents, check the list. If it's not on the list, call because some things are gluten-free but are not on the list or marked. Ore-Ida fries(all of them) are marked gluten-free. Skittles and Butterfingers are gluten free. Debole's pasta is sold in chain supermarkets and is pretty good. You have to cook it specifically to the directions, and get your own collander for draining pasta before you eat pasta at home again. They are like Cross Contamination petri dishes. Well, I just wanted to let you know some of the things that I wish I would have known when I got diagnosed. If you cook, I have some really yummy gluten-free recipes for dinner foods that you would never know that it's gluten-free. If you would like them, send me a private message. Good luck and have fun with it. It's a great chance to try new things.

    Brooklyn


  12. I was having the same kind of problem after going gluten free. I was still super tired all the time, moody, bad acne, just all around not feeling good after having my son last year. I was wondering if you have had your liver enzymes checked. I found out that on top of my celiac disease, I have Autoimmune Hepatitis. If you look it up, most of your symptoms match. To let you know, I never had aby jaundiced even though my liver enzymes were through the roof. Please let me know when you find out what your numbers are.

    Brooklyn


  13. Hello. I myself am now on long term Prednisone treatment for Autoimmune Hepatitis. I started at 50mg a day, and I have since tapered down to 20mg. The treatment has worked great for me, and my liver enzymes have gone down a lot. I still have celiac symptoms after being gluten free for 6 months and the Prednisone, but my recent EGD with biopsy shows that I have mild atrophy which is great considering that I had severe atrophy in January. When on Prednisone, the main thing to monitor are your vitamin levels and bone density. I take 3 multi vitamins, 3 calcuim 500mg with D, and 3 Flaxseed oil every day, and always with food because there are many things you can't absorp without having something in your stomach. I just wanted to add a little more info. Even though my other AI diseases are improving, my renal function has gone downhill and I am having horrible joint pain that is only helped a little by pain medicine. I'm being tested for RA and Lupus, and I go to see a urologist today. As for how long it takes to repair, my GI said that it could be anywhere from 2 months to a year and that every celiac is different.

    Brooklyn


  14. Hi. Going back up to your original post, I notice that you said there was an abnormality in you liver functions. I was wondering if you knew what it was? When I was diagnosed with Celiac, they noticed that my liver enzymes were about 4x what they should have been. They blamed it on my Celiac disease for a long time, and i just got sicker and sicker even though I was gluten free. I was diagnosed Celiac in January of this year. I went to a liver specialist about the elevations in august. He told me that day that he thought I had Autoimmune Hepatitis. I had a biopsy done in the middle of september and got diagnosed on 9/24/2009. I would be interested in knowing whether your enzymes were high. I also suffered from indigestion and right side fullness and a stiff feeling when I would breathe.


  15. Quest does a Comprehensive Celiac Panel which tests for the antibodies and does the gene mapping. This is the one that i had done on my children. They both came back with the gene and positive IgG. We are going to see a Peds GI at the end of the month. I would suggest doing this test. Also, I work for a GI doctor and this is the first test he does on suspected Celiacs and their first degree relatives.


  16. If you are responding to Prednisone and the swelling is symmetrical(same on both sides), you may be a sero-negative RA. My mother has those symptoms and she has sero-negative RA and possibly lupus. I would consult the Rhuematologist about the possibility of this. Also, on the note of Prednisone, I have been on it for over a month without and Celiac symptoms arising. My treatment is for Autoimmune Hepatitis. I am in the hospital right now with joint swelling in both knees and ankles along with my first two fingers are swollen and sore with redness on the joint. I also have myoglobin in my urine though. They aren't really sure what's going on with me yet but they are thinking RA, lupus, or nuero-muscular disease.

    Definitly call the Rhuemie on monday and suggest the possibility of you being sero negative. He might agree since you responded to the prednisone.

    Hope to help a bit. And i hope you get to feeling better.

    Brooklyn


  17. They can most definitly be connected because I have both. I was diagnosed celiac in January and diagnosed with Autoimmune Hepatitis in September, both this year. Autoimmune Hepatitis is very rare though. I pray that you get a diagnosis and can start treatment soon. If you don't mind me asking, what are the highest her enzymes have gone? Mine got up into the 400 ranges before they finally got a diagnosis. Also I would be more than happy to speak with her about the disease and what she can expect. AIH can be treated and put into remission with maintenance drugs. Please do keep me informed of her status.

    Brooklyn


  18. Well, I'm gonna be staying another day. The doctors didn't come and tell me anything today, so I believe they are still trying to figure it out. It rather odd to most of the doctors I've talked to so far that I am having myoglobin in my urine. I just hope that this is the last extended stay that I have to endure. I miss my babies and being at home. I will let everyone know when/if I get any news.

    Brooklyn


  19. Just a little update. I've now been admitted to the hospital here in Indianapolis. I was having what I thought was blood in my urine, but it turns out that it's not blood but myoglobin. This is released when muscle tissue is being broken down. My hepatologist is running a gammit of test to find out what is going on. But i will keep everyone who has replied updated on my progress.

    Brooklyn


  20. Hi, I'm having a really hard time coping right now, and I need some help. I have had two autoimmune diseases diagnosed in the past year. Just yesterday, I found out that my mother has lupus. I have a lot of the symptoms also. I'm being sent to a rhuematologist and getting bloodwork done to check for RA, Thyroiditis, and Lupus. I'm just having a hard time accepting all of this. I'm only 24 years old, and I feel like my world is falling apart around me. My children are having lots of odd symptoms, and now I worry my daughter might already have Lupus or JRA. She has positive IGG and popping joints with soreness. She falls asleep in the car on the way home from school. I just don't know what to do. I'm lost and tired. I wonder when it will end. How many diagnosises can I get before they find everything? I'm just wondering if anyone out there is going through the same thing or has gone through it already. I need someone to talk to.

    Thanks,

    Brooklyn