Frustrated And Desperate

[inmyhead]

I am so sorry for the length, but I wanted to be thorough. I have been looking at these boards for a couple of weeks now and have read how you encourage and help each other. I really need some advice and have nowhere else to turn. I learned of Celiac when I first started doing research after my oldest daughter was diagnosed with wheat, dairy, and egg allergies. I have been having various problems for years. I started having bad headaches when I was eight. I am 28 now. Over the years I have been diagnosed with anxiety disorder, ADHD, depression, and scoliosis. My thyroid and iron levels have always been normal. In college I was diagnosed as having malnutrition, but it could have been from crummy student eating habits. I have never really liked eating. I do not get

[Guest barbara3675]

If somehow you could afford to be tested by Enterolab, that would be the way to go. I was recently and was found to be gluten and casein sensitive when the doctor found me gluten negative through a blood test. He would have waiting until I had full blown celiac disease and then it would have been REALLY bad. Otherwise as your dauther is wheat and dairy sensitive and as these tend to be heritary, you should go completely and totally gluten/casein free for a long time and see how you do. That will be your test. Stay on this board and read, read, read as I have learned so very much from the people that are on here every day. Click on some of the topics that you wouldn't think maybe you would be interesting to you, but they can have some things that are very helpful to your situation. And most of all, stay on top of this situation for your children. I kind of backed into it as my darling granddaughter is six years old and has had celiac disease since she was one. She was very sick and fortunatly, praise the Lord, got diagnose properly and is thriving. Hope this has helped some. Barbara

[plantime]

You were only gluten free for a few days before trying the wheat again, so chances are your system was not clear enough to show a reaction. Try going gluten free for six weeks, then try the wheat again. You have to give your body time to clear all gluten from your sustem before a dietary test will show anything. Your symptoms do sound like you could have celiac disease. If you can swing a few hundred for Enterolab tests, you would have quicker answers to your questions. At the very least, eating gluten free is not going to hurt you, it might even be a healthier diet.

[tarnalberry]

I concur with plantime. Go completely gluten-free for four to six weeks, then eat a lot of gluten one day, and see how you feel. Symptoms are not _always_ obvious, and not always gastrointestinal.

[jaycee30]

I just wanted to add something regarding your post.

I've just reently found out that I am "gluten sensitive" and before that, I had times when I ate certain foods (like spaghetti, or chicken and dumplings, etc) that I also wouldn't have stomach issues....but I'd wake up in the night with that really fast, really hard heartbeat. My allergist at the time told me it was most likely an allergic reaction to something I ate - your body can actually have a delayed shock like reaction when the food hits your intestinal tract and the protiens are absorbed.

So, don't think that just because you didn't get the bad stomach problems, it couldn't be gluten...the BEST thing I ever did was go gluten-free after having fairly "inconclusive" blood test results and no biopsy. The difference is amazing and continues to get better every day.

I understand about the insurance/money issue. I have insurance and really feel for you in your situation. But going gluten-free can be a very cheap way to find out if it is a problem, although not if its the ONLY problem. Before I knew anything about gluten, celiacs, etc. and only knew that eating any kind of bread, pasta, etc. made me ill, I just switched my diet to lean meat, vegetables, fruit and potatos and rice. Didn't try to substitute, just got along without the other stuff. And I completely cut out any processed food, fast food, restaurant food, etc. That really saved money and gave me the budget I needed for the veggies and fruits (which can be a bit pricey).

Keep us informed on how you are doing....read and learn here as much as you can.

Jen

[inmyhead]

Thank you so much for your replies. You have all given me hope and great information. I had no idea that it took that long to get the gluten out of your system, or that it could have a delayed reaction. I will follow your advice and go six weeks before trying anything with gluten again. I still have so much to learn. I will keep reading this forum. Giving up gluten does not seem like a big sacrifice if it will make me feel better. Thank you so much for helping me!