-
Posts
176 -
Joined
-
Last visited
bincongo's Achievements
-
-
I don't think "low gluten" cuts it. If you have Celiac disease, you cannot have gluten. Period. Whether or not you react, you are doing damage. Sorry for the tough love..but learn to like Redbridge or Bards, or maybe acquire a new liking such as cider. Your body will thank you.
Right on!
-
I love grits. Now can anyone tell me why Crackerbarrel will not say their grits are gluten free. I would love to go there and have their bacon, eggs and grits and maybe the apples on the side. It would feel almost like before I had to be gluten free. I even have a girt card I can't use.
-
The last time I checked it was the seasoning that made the broccoli off limits. I ordered it one time and just said no seasoning. I didn't like their shrimp scampy because the shrimp is so small but I have had the snow crab legs without any problems. The cheesecake is real good.
-
Recently Wikipedia has added information about the HLA-DQ . Look at HLA-DQ for an overview then look at HLA-DQ1 and HLA-DQ2.
Did she have the molecular analysis of the DNA alleles or did she have the serology test for the celiac antibody binding site on the antigen receptor cell? Could you write down the results as shown exactly on the report. What you wrote seems to shows one DQA result and one DQB result instead of 2 results - the other set of DQA and DQB are missing.
We inherit one DQA (allele) and one DQB (allele) from each parent. So if both the A allele and the B allele were tested then there should be 4 results. Some labs test only the two HLA DQ B alleles (Enterolab.com).
I will have to contact my daughter to see if there was more information but I didn't think there was. She did a mouth swab test and sent it to Kimbell. I just have a feeling that she may have inherited problems from her father since he has Lupus on his side but I do know she could have gotten everything from me. My sister is also DQ2 positive but does not test positive for Celiac yet but she has other autoimmune diseases.
-
Re the Nexium. Are you still having heartburn? If your not you may want to talk to your doctor about weaning off the heartburn meds. It is important not to stop this med suddenly as it can have a rebound effect if you do. If you are you may want to make sure you don't have an additional intolerance. Oddly enough soy gives me awful heartburn, which liquid Pepto Bismal takes care of in one dose, gluten doesn't give me heartburn at all but does give me awful cramping. Everyone is different though.
My GI doctor wanted me to be on Nexium for a year which isn't recommended from what I have researched. I said I would do it for 6 months. I am in the process of weaning myself off it but I am doing it slowly. I never really had a lot of heartburn but my endoscopy showed a lot of stomach problems. I am sure being gluten free will help that too. I just am trying to be very careful and having to worry about the medicines I take should not be an issue but it is.
-
I talked to the makers of Nexium today and now they say that their inactive ingredients come from outside sources and can not be guaranteed to be without CC issues. I see that Nexium on the gluten free durg sites is still listed as gluten free. Is this something new? Should I change medicines and if so which one? Is this something all the drug makers have to deal with?
-
I am a Celiac and was diagnosed by biopsy. I never had gene testing done. My daughter just got her gene testing back and she is positive for the gene. Now I guess her next step is to have the antibody testing done. What I am interested in is whether she got the gene from only me or maybe her father also. Her father's mother had Lupus.
Her results are positive for DQ2. No DQ8. She has DQA1 0501 or 0505 and DQB1 0201 or 0202.
-
I live in the USA. My Sandoz medicines checked out ok but it turns out the Richmond pharmacy is not listed anywhere as a drug maker so someone in Richmond is trying to help me out. And now I am not sure about Nexium. My mail order pharmacy that is government run(Tricare) doesn't like to give me anything but generics.
-
I am hearing more talk of having to check out the manufacturer's of the generic drugs. I get mine mail ordered so I don't have direct pharmacy access. Does anyone know if Sandoz or Richmond Pharmacy only make gluten free drugs. I am not getting an answer on line. I take Levothyroxine, Clonidine and Fosinopril generic.
-
Just remember guilt keeps us in the past and never seems to solve anything. But of course that is easier said than done.
I just went through my first gluten free Holidays. Thanksgiving turned out great. We all met at my daughters home since she just had a baby, and I did all the cooking. By doing all the cooking I was able to control what was done and it turned out great. As for the Christmas season, I was glad I missed all the parties because I was helping my daughter with her new baby and she lives out of town. I kind of dreaded the parties because I would have to look at the good food and not eat any. Next year maybe I will be able to except my situation better but this year I was glad to opt out.
I did find two of my favorite Christmas cookie recipes in gluten free form and they were very good.
-
I am going to San Fran in March and I am hoping that I can have the Godiva cheesecake because it is my favorite. Is it a CC issue because of cutting it at the resturant or because Godiva says it isn't gluten free anymore? We don't have a Cneesecake Factory where I live so I am really looking forward to having my cheesecake.
By the way the cheesecake at Red Lobster is very good too. It doesn't have a crust.
-
Thank you for the encouragement. My genetic tests came back pos for HLA-DQ 8. I was surprised, because I fully expected the doctor to tell me there was nothing medically wrong with me and I ought to see a psychiatrist. However, I am trying now to be strict. I was practically already gluten free with one large exception - I had taken to medicating myself over the past two years with a beer or two in the evenings. It disconnected me from the dyspepsia and allowed me to eat an evening meal without anxiety and discomfort. I don't like wine (and sometimes get asthma from it) and can't tolerate any other form of alcohol. But it has been surprisingly difficult to discontinue my nightly beer, even knowing what I know now!! All I can do is radically change my physical habits (i.e. be out of the house at the accustomed hour and not even try to eat past 4 pm) I am hypothyroid, and have been treated for 8 years.
An interesting additional fact - I read in one report that the DQ 8 gene is less common than the DQ 2 gene in celiac sufferers, but is also linked to rheumatoid arthritis and Sjogren's, both of which I have had symptoms for (particularly Sjogrens- I'm with you there - I have all its symptoms, but tested neg) The other surprising struggle I'm having is with the depression. I have felt so weak - and have rather let myself go, it seems to be very difficult to maintain the self-care necessary for recovery. I gave up a couple of years ago and despaired of ever feeling good again, (or wearing a pair of fitted jeans) and it's been really hard to change gears, when I should be relieved, overjoyed that I can recover, and working toward a new lease on life! I feel even more upset with myself. Has anyone else experience this?
I know there are a lot of people who can offer support and insite here. I don't know if you are aware that depression is common with Celiac's who are not gluten free. I have been there. And although I don't recommed beer to solve any problems, I know there are gluten free beers. I have tried Redbridge? I think that is the name, and it tastes like real beer.
-
I found a fabulous recipe for spritz cookies in Bette Hagman's book, but I can't get them to stick to the cookie sheet from the cookie press. I ended up rolling them like sugar cookies, which worked (They were really easy to roll, not too sticky) They are PHENOMENAL, but I want to press them for the designs. Any suggestions?
I got that book for Christmas and used the same recipe and I loved it. I used the double walled Airbake that I got years ago and did not have a problem. I also like the pecan sandies recipe in the same book.
-
I made the original post and at that time I had not been gluten free very long. I do agree that people have to be careful with Ambien but for short term relief and taking a small amount it can work. I now use 1/2 a tablet 2-3 times a week but for the most part I use Melatonin or Melatonin with HTP. For all those having problems with sleep hang in there. It can get better but take awhile and sometimes we get into bad sleep habits because of all the sleep problems.
-
I'm looking for something that would enrich my 2% Lactaid milk to use in recipes where I would have previously used either evaporated milk or half-and-half. I drink black coffee so have never used Coffee Mate so know nothing about it.
Any suggestions?
Lactaid milk comes in whole milk too if you can find it. Some stores have their own brand of lactose free that is cheaper. When I want a thicker milk I use Lactaid whole milk but I might try adding real cream too.
-
But I JUST went off gluten. Am I still going to heal if I might get CC here and there? I know I can't expect to get completely healed if there's any gluten, but will I at least see that my efforts are starting to work?
It is a question many of us have faced and you might find different answers. I found that I did feel better from the beginning even if I had not learned all I needed too but I had good days and bad days. Usually it was good weeks and bad weeks but I just kept learning what not to do and after about 3 months I quit having "bad" weeks. I am a long way from being healed since my intestines were badly damaged but I did see an improvement in my symptoms. Hang in there.
-
My first gluten free Thanksgiving and I was very pleased with the results. I cooked dinner at my daughter's house since she just had a baby. Our whole family got together and it was a wonderful get together. I cooked and everything was gluten free except a store bought pumpkin pie. My son-in-law made the stuffing with gluten free cornbread and he said he liked it as well as his usual gluten cornbread. I made the best sweet potato casserole from the Living Without magazine.
Now my biggest problem is missing Christmas parties because so many aren't gluten free. That is the biggest thing that makes me sad this year. Sometimes I think of going and bringing my own food but that isn't much fun.
-
I wanted to add a reply so I had it in my posts. My sister lives in Las Vegas and so when I go to visit I will have your helpful information.
-
My (brand-new) husband and I just spent almost a week in Las Vegas. I wanted to give you a heads-up about successes and problems I faced while being gluten-free, casein-free in Las Vegas without the benefit of my own kitchen or cookware.
We stayed in Luxor. I do not recommend that anyone else who is gluten-free do that, and we won't do it again. The kitchens in the Pyramid Cafe, which is the Luxor restaurant (and the same kitchen that does room service) uses only non-stick pans and seems incapable of understanding that this could be a problem. We walked in, realized the problem, and never ate there. But this made breakfast more inconvenient. I wouldn't trust the buffet in either Luxor or Excalibur (owned by the same company) because even after multiple attempts, we were unable to get someone on the phone to speak with us - even with the help of the concierge. With customer service like that, I just don't trust them.
BUT that was the only really bad experience we had. My breakfasts were Lara bars and Trio bars, with some gluten-free/CF potato chips and popcorn tossed in (I'll eat ANYTHING when I'm hungry enough). We basically went for one meal a day in a restaurant, and my husband went for breakfast (fast food) by himself in the mornings.
Our successful restaurants:
Delmonico in the Venetian - I explained my dietary restrictions and the manager came out to speak with me, double-checked everything I was eating, modified menu items, and acted like it was totally normal. Expensive, but AMAZING food.
Rainforest Cafe in the MGM Grand - already known by this forum as a Celiac-friendly restaurant, their gluten-free menu contains lots of casein-filled items and they are inflexible with their garlic mashed potatoes (wouldn't let me substitute them out for something I could eat, so they went to my husband the whole time). I had the Maya Mahi with roasted veggies one time and the steak with chicken and grilled shrimp, adding roasted veggies on the side. Moderately priced, especially for Vegas casino restaurants.
Harrah's buffet (called Flavor) - EXCELLENT SERVICE. The head chef came out and walked me through the whole buffet, specifying which items were safe and which weren't and why. There were lots of options, but I mostly ended up eating crab legs and shrimp because I had a craving. This was how we spent Thanksgiving.
Sushi Roku at Caesar's Palace - Wonderful experience, but it's really the best if you like sushi or sashimi because most other dishes contain some soy sauce or soy marinade and are unsafe. When it comes to their sushi, only the eel is unsafe (it's marinated in soy). They have tamari (gluten-free soy sauce) to bring to your table on request, and I was able to eat normally. I double-checked their wasabi and sushi rice in advance, and they do not add flour to the rolls or rice and their wasabi is gluten-free. Tasty food and reasonably priced for a Japanese restaurant in a casino (read: more expensive than in a normal place, but not crazy). I had the chef's special sushi combo, which had no eel in it.
Eiffel Tower Restaurant at the Paris - This was probably the single most amazing experience I had because the chef said he would make anything I wanted from the menu because they're a scratch kitchen and he would modify as required. We were celebrating our 3-day anniversary and they actually took my wine off the bill, too. They definitely bought my loyalty. I ended up having duck with mustard greens and lentils, and it was amazing. We ran into the man who oversees the whole restaurant accidentally on the way out and were able to raise a bit of Celiac awareness with him, too. So that was a double-win.
Burger Bar in Mandalay Bay - They use a grill so this is probably not the safest for the super-sensitive, but I did fine with a normal burger ordered without the bun. I just got a buffalo burger with extra lettuce and grilled onions and portobello mushrooms and it was delicious. I made sure to not get french fries because I noticed they also make onion rings and other breaded items. My buffalo burger was wonderful, and this was quite reasonably priced.
I hope this was helpful! Next time we'll call ahead before booking to be able to stay at a Celiac-friendly place, but otherwise it was quite a success!
Let me know if there are any other questions I can answer for anybody about the trip. I managed to avoid being glutened at all. I'm not the most sensitive Celiac in the world, but I do get symptoms when I get glutened, so I am a semi-reliable glutenometer. ;-)
Also, on a related note: I JUST GOT MARRIED! YAYAYAYAYAAYAYAYAYAYAY!!!
-
thanks for the replies everyone
I was under the impression that if you have celiac disease, gluten damages the villi of the intestine, but if you are non-celiac gluten intolerant, you don't actually get the physical damage to your intestines, it just makes you feel unwell. Likewise, if you are celiac, then eating even small amounts of gluten WILL cause damage (and can lead to other autoimmune diseases like you mentioned), but if you don't have celiac disease, you don't have an autoimmune disorder only a food intolerance, so how can eating gluten lead to the other illnesses?
Sorry if that makes no sense, it's hard to explain what I mean. Am I wrong?
I'm so confused ><
_____________________________
I believe you are correct. The blood tests for antibodies though can be incorrect. If you wanted to know if you had a gene for Celiac than you would also know if you could ever have a chance of developing it. I would recommend gene testing if anyone in your family has Celiac or other autoimmune diseases. I know gene testing isn't fool proof either but it is still pretty good. I know many people on this site say just go gluten free and be done with it. Well for me being completely gluten free is major change in someones life and I wouldn't do it unless I had too. I have too because I am a diagnosed Celiac but if I were just gluten intolerant I would eat based on my symptoms. But that is just my opinion and not shared by all.
-
I guess I am a little different. I say I have to be on a special diet when they ask me why I can't eat something. If they ask for more information then I say I can't eat wheat,rye or barley because it makes me sick. If they are still curious then I explain further. At resturants I say I need to eat gluten free or I have a wheat allergy.
-
My daughter went to her doctor today. He sent her to the lab he uses and they didn't have a clue as to how to do gene testing. She lives in North Carolina so he told her to check with Duke or UNC to see if they had any research going on that might pay for the test. I find this whole thing confusing. I don't think that since I am a Celiac that she should have to pay for testing. I don't know how much stronger family history you can get than your mother being a Celiac and probably her aunt who has the gene and will have antibody testing done soon. She wants gene testing done so she can know if she has anything to pass down to this new baby of hers.
Her doctor said that his wife's insurance paid 5 thousand dollars worth of gene testing because they were looking for cancer genes but no one seems to care that much about Celiac gene testing.
-
Has anyone tried this My CELIAC ID ad thats on this site?? It seems logical and is alot cheaper then an endoscopy matched with blood tests. At least a stepping stone to those tests?
I was diagnosed by both blood tests and endoscopy in March, sure it took me a few months to really figure out what gluten free was but I have been a super strict for the last three or more months, have not eaten anything I have not prepared my self and know is gluten free, yet I still suffer abdominal pain and bloating.
I think I might take the Gene test as this will confrim weather I could have been mis Diagnosed?
And idea's or advice,
Cheers
____________________
I don't think I would waste my money on another test because the endoscopy is the "gold standard" for testing. I would ask for a copy of my endoscopy results(the biopsy) and even the blood tests if you haven't done so and really read what it says. You can ask people on this site how to interpret the results.
-
Any product that can get on your hands can get in your mouth. I wash my hands a lot especially before I touch any food. I am tired of washing my hands so much but I am slowly using up my gluten personal care supplies and then I will go completely gluten free just so I don't have to wash my hands as often. If you think of gluten as a germ than touching it puts it on your hands. I am sure not everyone feels they have to be so careful and it is a personal decision.
Healing After New Diagnosis
in Post Diagnosis, Recovery & Treatment of Celiac Disease
Posted
I have been diagnosed a Celiac for 6 months now. I found this site to be very helpful and I spent hours on the computer to learn more. I had to go Lactose free and soy free but yesterday I had a latte and forgot to take my usual lactose tablet and I had no problems. I really think I am actually healing even though it has only been six months. I had total villi atrophy, as bad as you can get. I will have more blood work done in 2 weeks. I did take iron, vitamin B1,B6 nd B12, folic acid and a good vitamin but I will stop these if my blood work improves and it shows my diet is working and showing less autoimmune reaction.
I would only stick with companies that say they are on totally gluten free lines. For those who have gluten intolerance or wheat allergy it isn't always as important but for Celiac's I feel it is important. It takes a lot of searching to find what is safe.
I have to add that I was only soy free in that I didn't eat food that called for soy sauce but I did not look at every label of all foods to see if it contained soy. I can't drink soy milk so I go with lactaid milk.