Big Time Advice Needed. Feeling Lost....

[ageearmywfe]

Um. Hi I am Aimee. I was just told by my doctor that I am a celiac. Being refered after my sister found out she has it too. My mother and brother have all the symptoms. As well as many others in my family. I guess I don't know where to start. Every female in my family except for my sister has had gallbladder surgery. I was 16 when I started getting really sick. After three years of a doctor telling my mother I was just spoiled and looking for attention we had to go across the state and find the one doctor that would take me because of him and 2 days later my gallbladder came out. 7% functionability he said. I have been really sick ever since. Constant trips to the bathroom and always feeling like I could never do anything.. Like a total state of confusion and the exhaustion was out of this world. I have forced myself to live a normal life blaming everything on my weight and the gallbladder. No matter what I did though I couldn't loose weight. A year and a half of weight watchers with 11 jazzercise classes a week proved that. I never lost a pound.

Now I am sitting here with all the answers and I don't know what to do. I haven't done the biopsy yet and my doc is pushing for it. How important is this test? I mean the risk is another surgery table and everytime I get on one of those I end up feeling worse. I know there isn't medical treatment is there?? I went out and bought five books and have been gluten free for 5 days now but is there anything else I need besides someone to talk to that is already gone through this?? I am moving to Texas in a month and even looked up support groups in that area and there are none. I guess I am looking for someone to enlighten me. I spent 15 years of my life not knowing and now knowing seems to be leaving me confused.

[MySuicidalTurtle]

You don't need to have the biopsy if the diet works for you. This site will help you so much especially since there isn't a support group for you to to. I went to therapy and that helped a lot, so, you could try that, too. It is so stressful to have all this thrown at you, even though it makes sense. After awhile the diet becomes natural. Good luck!

Kristina

[Guhlia]

The diagnosis is the worst (IMO). Thankfully, you have other people around you to go through it with you (your sister). That makes it much easier, assuming the two of you get along. My best advice to you, go out and buy yourself a good gluten free cookbook (I recommend Incredible Edible Gluten Free Food for Kids -- not just for kids, I swear) and indulge on a couple of goodies. Getting well is often a long process and I'm thankful that you've finally found your answer. The people on this forum are wonderful, truely wonderful. Their advice has made my journey so much easier. It's nice to not feel so alone and it's nice to have a "friend" to turn to whenever you need advice.

[4getgluten]

Welcome to the board! Keep reading and asking questions; you will learn so much here. The biopsy will help give you a firm diagnoses, but if it were me, I’d skip it. Focus on getting well instead. Learn everything you can about the diet. It takes time to master, but you will master it. It's really not that hard. I made lots of mistakes along the way and sometimes still do. For me it was a total change in my life-style. But it was worth it! I feel better now than I have felt in years. The healing process could take months, even a year or more. Everyone is different. Try not to get discouraged. It took me 7-9 months of eating gluten-free, before I started to feel good. It took a year before I felt great. Good luck, we've all been there.

[tarnalberry]

Welcome to the board. The biopsy is your choice - you have to determine how important a formal diagnosis is, and find out whether or not your doctor will give you a formal diagnosis without the biopsy.

The treatment is fairly straight-forward, a gluten free diet. The intricacies of eating gluten free - the food and the social aspect - is exactly what we're here for, and this is a helpful bunch of people to do it. If you pursue further testing, do NOT go gluten-free yet; it will interfere with test results. If you opt to go gluten free at this point, I recommend starting with a very simple diet based on whole, naturally gluten free foods - meats, eggs, nuts, dairy, fruits, vegetables, beans, rice, corn, oils, etc. And come back with your questions! :-)

Welcome!

[Canadian Karen]

I really don't put as much stock in the biopsy results as I do to the positive dietary response. With the biopsy, if the damage is spotty and patchy, it's basically a hit or miss situation as to whether they take the samples from the damaged areas or not......

There's a bunch of really great helpful, knowledgeable people here who are always around for support. Don't be afraid to ask any question, we have all been there. We even discuss poops in detail, so we are not queazy in any way! LOL!

Welcome!

Karen

[mommida]

Welcome to the board!

You can get the biopsy, find out where you are at in level of damage and rule out any other problems. The number of biospy samples taken can be like searching for a needle in a haystack. It's not a 100% realiable.

If you have internet service when you get to Texas, then you have this forum as your support group.

Really, whatever your questions are just ask.

L.

[michmash]

Hi Aimee, I am sorry that you are having so many conflicting feelings. I would think that since so many family members have been positively diagnosed as being celiac and you are experiencing the same symptoms --why go through the biopsy unless you are having other stomach problems like acid reflux or ulcers. I had all of that and had my gallbladder removed and then found out I had celiac after being bed sick for a month. Part of having celiac disease is depression, and mood swings and actually you may be a totally improved person after a couple weeks of no gluten. I felt better in 6 days and was able to leave the house without an accident. I have known about celiac disease for about 8 years and it is getting better and boy are the gluten free products getting better too. You are doing the right thing by seeking out support groups in Texas and if you cannot find one maybe you can start one and I bet you can get some advice if you needed it to do so. It is amazing how just talking to someone else about your problem has a healing affect on you.

[ageearmywfe]

Thanks everyone. I have read alot on this board and I am really feeling a little better about the whole thing. I already bought 5 different books including some cookbooks. I did have some trouble with acid reflux but honestly I haven't had any trouble with that this week. I am hoping it stays that way.

[Guest nini]

welcome to the board, my thought on the biopsy is since you have such a strong genetic predisposition (family members that have it) and positive blood test, you do not need the biopsy, it can only confirm damage at this point, it cannot rule out Celiac, so, skip the biopsy and get onto the business of feeling better. This board is the best resource for getting your questions answered, learning the diet, and general support. It's really not that hard once you get the hang of it, and you will find that you are a much happier person off of gluten!