Need Some Help!

[bet127]

Hey all!

I've been experiencing symptoms for years that I could never explain. I even went to the ER once for sharp abdominal pains that had me doubled over at work years ago. It was a horrible experience that wasted my time and money, as the doctors basically made me feel stupid and couldn't even diagnose me with an accurate problem. They said it was "probably" IBS and I should take Zantac. I knew I had more symptoms that IBS would not explain....I was 19.

Fast forward 4 1/2 years and I'm still experiencing the same pain only more symptoms which include extreme fatigue, constipation, irritability, mood swings, nervousness, anxiety, heart pounding, skin sensitivity, depression, I sometimes feel like i'm going to vomit but I never actually have, I "black out" all of the time for no reason and have feelings like I'm going to pass out, and a couple of other random symptoms that I used to think were totally unrelated like joint pain, numbness in my legs and bone pain.

I consider myself to be fairly healthy and active, I'm 25 and in a normal weight range. I grew up eating horribly and have had to really pay attention to what I eat as I get older. Even though I watch what I eat, I still splurge probably too much and don't eat as great as I should, but I don't over eat like crazy.

My husband and I have also tried to have a baby for a couple of years and have never been successful, we went through all the tests including a progestrone test for me and everything came back normal and fine, so I guess that would be "unexplained infertility". My doctors told me it was stress, so I assumed they were right.....even though I tried everything they said including just taking a break from trying completely for a year and doing things to de-stress! I felt fine and didn't even consider myself to be a stressed out person so I felt like something else had to be wrong...

I need some help figuring out if this is celiac or a gluten intolerence of some sort. I'm totally open to the idea and am actually super relieved that I could have pinpointed the problem so I can fix it. I'm tired ALL of the time even though I'm constantly napping and taking time off to relax and unwind.

So, I have a couple of questions for you knowledgable folks out there.

Recently I've tried to start eating healthier because I was feeling horrible CONSTANTLY, if I'm super strict with my diet then I can lose weight with MUCH effort, but if I get off my diet for a couple of days and splurge with say, a cookie or two, I immediatley blow up and gain tons of weight! It's so frustrating. Is this a symptom? Has anyone else experienced such crazy weight gain or is it something else? I thought recently that it was a hormone issue, but like I said, I have way more random symptoms that don't make any sense...!

Also, the "bone pain"...I have to have my husband rub the bone part of my calves, ankles, knees and arms every night because the actual bone feels numb, restless and irritated.....this makes no sense to me and when I asked my chiropractor he had no idea either and thought I was crazy..ha.

I already have athritis in my hips and I'm only 25 so I'm thinking maybe I have had this problem for a long time and just didn't know it.....I've always been sensitive to certain foods and thought I may be lactose intolerent, but I can eat some dairy products and feel fine, so eliminating dairy didn't really help.

Someone PLEASE give me some advice, input or opinion! I was scarred by my last few doctor experiences and am going through some crazy transition that makes it almost impossible for me to see a doctor and get diagnosed anyway. I just started cutting out gluten and feel better for sure, but if it's something else I want to fix it!

Does any of this ring true? I would appreciate the help so much!

B

Sorry so lengthy.

[1desperateladysaved]

Get better soon, please. Please do explore gluten free diet and testing. I did a genetic test through the Gluten Free Society. They have a website and I recommend visiting it to help determine diet. The genetic test checks to see if you have gene alleles for gluten sensitivity. My MD believed the tes,t even when her IGG tests showed negative. The test is so easy. You just rub and roll a tiny brush inside of your cheek to collect some cells. With this test, it is not necessary to be eating gluten recently. My test showed I have 4/4 and I found out my children have atleast 2. If you have any of these alleles, you should avoid gluten. Anyway, you have many symptoms that I or my children have.

You are still young and have a good chance to recovery fully. However, it will take alot of know how and taking care.

My treatment includes: Testing just to verify if avoiding gluten is a necessary thing for you. You should check to see if you have any additional allergies that you don't know of. Maybe someone else can clarify this as I have not done a worthwhile test. You should make sure you don't have anemia or inability to absorb nutrients from your food. That would be a spectra cell. You must take supplements for the nutrients you are low in. Most of all, if you have gluten intolerance you should never eat it again.

I pray you will get God's help on this to. "Come to me in your day of trouble and I will sustain you," He says. The Bible is the place to look to find His love for imperfect people. Sometimes, in life one just has to let themselves be carried, trusting in God is restful. "Come unto me all ye that labor and are heavy laden, and I will give you rest for your souls." That really sounds like a promise for a Cealic.

I don't think your crazy. I hope you will soon be experiencing great measures of healing.

Diana

[MitziG]

You sound very much like you have celiac disease or gluten intolerance. First, get a complete panel of celiac blood tests done at your doctor. Continue eating gluten during this time, because if you stop, the antibodies will disappear and your test will be negative.

If you have a positive, some drs will diagnose you by that alone, and they should, as false positives are very, very rare. But most docs want to do an endoscopy with biopsy to confirm. Your choice. Still keep eating gluten until after the biopsy.

Your biopsy may or may not show celiac- it can be easily missed. At that point, regardless og dx, go gluten free. Gluten intolerance is as serious as celiac and can NOT be tested for. If your symptoms resolve, you have your answer.

PLEASE do NOT "try the diet" first. What usually happens, is people feel a bit better, but others doubt them and question the restrictive diet. It is hard. And it is for life. So then you decide you should get a diagnosis. But since you were. Already gluten free, that means doing a gluten challenge. Eating lots of gluten for 3 months. Which is not as much fun as it sounds because now that your body has had time to detox from gluten, it will be really angry at you for poisoning it again. You will likely have a very painful, violent reaction when you eat it. And since most people can't handle being violently ill for 3 months, they quit and go back to being a self diagnosed celiac. Which is the vast majority of people on this board.

As for the testing the above poster recommended. It is controversial, and nothing that any doctor will accept as valid. Not saying it isn't accurate, but if you don't want everyone pooh-poohing you and thinking this is all in your head, that is probably not the way to go.

All of that said, it is very likely gluten is your problem. It is the rare person who DOESN'T suffer some degree of intolerance to gluten, whether they realize it or not. Knowing this is the key you need to finding much better health for yourself, whether you are a celiac or not!

[MitziG]

Just to clarify so I don't offend Diana- genetic testing IS valid for showing if you have celiac genes...but most drs will not give you a celiac dx just because you have the genes, since you can carry the genes your whole life and never get the disease. That her dr accepted them as proof enough is a rare, rare occurrence, and it is most fortunate that she did, and that this allows her to feel confident in her diagnosis!