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Member Since 02 Mar 2005
Offline Last Active Jan 29 2006 05:52 PM

Topics I've Started

Is This Normal?

24 January 2006 - 07:07 AM

After testing several weeks ago, my tests came back showing a huge intolerance to casein and all dairy products, a moderate intolerance to gluten, and no full blown celiac disease, just the intolerances. Well, I stopped eating all dairy products and gluten products, have a gluten free house, etc, and I've gotten worse, not better. Since I stopped eating gluten and casein and other various allergenic substances, I've had horrible stomach cramping and pain, heartburn that sent me to the cardiologist cuz I thought I was dying, my stools (sorry, this is where it gets graphic) are either rock hard and not wanting to "leave the building", causing some ripping and tearing, or very loose and full of mucuous. I am sicker than I ever was eating dairy or gluten. Also, my stools are "sandy", or "gritty" or something, have a consistency like an apricot facial scrub (again, sorry, graphic). Is this normal? I took some probiotic pearls prescribed by my naturopath and stopped taking them because I thought maybe they were causing the problems, but that was three weeks ago and I'm still all screwed up. Anyone else have these symptoms? If so, what was the cause and how long did it take for them to go away?

Thank you!!

Testing Suggestions

07 December 2005 - 05:25 AM

Just wanted to throw out some suggestions for folks struggling with getting a diagnosis or information. After a two year battle of trying to figure out what the heck is going on with me, I think I'm finally getting the help I need and would like to share it with others. I contacted Great Smokies Laboratories (you can google them and get their website, I can't ever remember it offhand) after reading their website. They have a food antibody assay that includes both IgE and IgG mediated allergies, plus a full celiac panel, among several other tests. The catch is that they require a physician to order the tests. But, I emailed them and got a list of doctors in my state that will refer to them. I made an appointment with a doctor close by, a naturopath, and went in a few days ago. I told him my long story about all of this stuff and let me tell you, what a huge difference between him and other doctors! He spent two hours going over everything with me, ordered comprehensive celiac panels and food antibody tests, among a whole host of other tests, explained all of the tests to me, including their advantages and disadvantages, talked with me about all of my various options, talked with me about leaky gut syndrome and other things that he believes may be going on, talked to me about the stress and frustration of all of this and how that can affect my body (he was very sympathetic and kind about that stuff) and then asked me to call him every few days to just let him know how I was feeling and doing until my test results come back!! He was absolutely wonderful and I believe now that I am going to get some definitive answers. My thought is that most doctors that do refer to Great Smokies, which is kind of a "non mainstream" lab, will more than likely be similar in that they are willing to think outside the box and work differently than regular doctors to get a diagnosis. So, just in case anyone is wanting to try a different way to get some answers, I would suggest/recommend getting in touch with Great Smokies to get a referral list and getting in touch with one of their referring physicians near you. Although I can't guarantee it will be better for you, thus far this is the best experience I have had with a doctor regarding this celiac/food allergy question.


What The H*$% Is Going On?

05 November 2005 - 04:22 PM

Okay, I am needing some guidance here. I'm thoroughly confused. I am gluten sensitive, tested positive to wheat and a whole host of other things in a traditional skin test (IgE mediated allergies); I have figured out the difference between IgE mediated and IgG/IgA mediated allergies and have come to realize that I have a bit of both. I'm avoiding the foods that I tested positive for as well as gluten. However, I'm finding that I'm having allergic reactions to almost everything now! I'm terrified of anaphylaxis, I mean absolutely terrified of having a reaction, I'm cooking everything from scratch in a dedicated kitchen, and I'm reacting to things I've never reacted to before. I eat a bowl of plain, organic brown rice and the next thing I know my head is totally stuffed up, my lips are burning, I'm getting little itchy spots all over my body . . . I eat an apple, same thing. I eat a salad with homemade oil and vinegar dressing, same thing. The weird thing is, I can eat a bowl of Spaghettios (before payday, totally broke, and only thing in the house leftover from the "good ol' days") and be totally fine. Just fine. No reaction. Not days later. Nothing. I'm becoming anorexic, to be perfectly honest. I am already hypoglycemic but I'm finding myself pushing how long I go between eating longer and longer and longer because I am so scared to eat. Things I didn't test positive for are now making me break out and itch and get stuffed up and sick. I am staying in a bad relationship because I am afraid to be alone/eat alone for fear of an anaphylactic reaction. I won't eat unless there's other people around and my boyfriend works nights, so basically I've stopped eating after about 2 every day. I can't get a straight answer from any doctor and frankly, this is ruining my life. Literally, I feel like my life is getting ruined because I can't even eat a freakin' apple anymore! Is this all in my head? Am I doing this to myself with my fear of anaphylaxis and food? Can anyone help me understand why I'm reacting to everything (and I mean EVERYTHING)? This has gotten really, really bad and I need help! Thank you!!

Trying To Make Sense Of It All

19 October 2005 - 06:52 AM

I am needing some help figuring out all of my test results and am hoping that someone can help. Here is what has been determined so far:

Antiendomysial antibodies: negative
IgG: positive
IgA: negative
Enterlab: Slightly positive to gluten, no intestinal damage, no celiac gene (other "gluten sensitive markers")
IgE skin prick tests: positive for allergy to wheat

So, it's obvious that wheat is a problem for me, and that is fine, but I'm wondering if "gluten" is a problem for me. From what I've read, even on this site itself in the research articles area, antiendomysial antibodies are very conclusive for celiac disease, so since mine were negative, I don't have celiac disease. The articles also say that the positive IgG could be something else too because it is a less specific test. Everything I have read on the web about the gene testing says that it is "impossible" for someone without the gene to develop full blown celiac disease even with sensitivity. So, I understand that I am allergic to wheat and need to avoid it, but I guess I am wondering if I have to avoid "gluten" the same as I would avoid wheat. Due to a tremendous amount of other food allergies I have discovered, it would be nice if I could eat simply "wheat free" instead of gluten free. Help?


Feeling Very Frustrated

14 October 2005 - 05:49 PM

I need to vent. Hope that's okay. Was diagnosed with celiac disease about a year ago. After doing some research, didn't trust the doctor who diagnosed me. Did Enterolab, which stated that I showed evidence of "gluten sensitivity" but no intestinal damage. Took that to my doctor. They said "not full blown celiac, should still avoid wheat and gluten". Fine. That was hard enough. BUT, I got totally away from gluten for a year and still felt horrible. Went to another doctor. Suggested an allergist. SO, went to an allergist. After some initial confusion about the results (which are still confusing), results showed that I am allergic/sensitive to chicken, fish, shellfish, eggs, wheat, corn, soy and all other legumes, nuts, peaches, bananas, melons, citrus, celery, and carrots. SOOOO, I now cannot eat anything but red meat and potatoes, basically. Extremely frustrating and I spent about a week being very, very upset. Now all I eat is red meat and potatoes and apples and feel gross, bloated, and nutritionally deficient. Can't even take vitamins because they have corn binders in them. Thought my life was bad before with just gluten BUT, I have tried to have a positive attitude because frankly, this last year has been horrible and has resulted in my almost getting divorced and losing my job due to depression and anxiety.

OK, so I get a positive attitude, decide to try to live this way because it can't be any worse than feeling like crap all the time, right? So, I go to the store, spend tons of money on all of these specialty allergen free foods and mixes and flours and whatnot as well as meat and potatoes. Search for hours for recipes off the internet. Spend more time than I really have cooking. And, as peppy as possible, try to make these things so that I can have a somewhat "normal" life. And after attempting to do this several times, I only have one question: Who makes these products and who makes these recipes??????

I have bought a number of products from "reputable" and recommended celiac and allergy free companies and have spent a lot of money on this stuff, follow the recipes to a T, and end up with some kind of God-awful gook that I wouldn't feed my dog. Just this evening I went through 2 brownie mixes (total cost 16 bucks, ridiculous) only to find that one of the mixes stayed like dry powder mix and was useless and the other turned into an sticky, oily clump that wouldn't "glop" off of the spoon. When I did get it off the spoon, the brownies were so oily that, I'm not kidding, they were boiling in the oven. Boiling brownies???

And that's not to mention the hundreds of dollars I have already spent on supposedly tasty pizza crusts that come out like a brick, cookies that would make good hockey pucks, and muffins that you could block a car on. Or the hundreds of dollars I have spent on cookbooks that now I can't use because they all use soy or corn or xantham gum (corn-derived) or eggs.

I can't win and I was frankly a heck of a lot happier when I didn't know what was wrong with me, felt pretty crappy, but could eat. And I'm now at the point where I've decided that it's not the end of the world to just eat real food and take Immodium every day and feel tired and crappy. It's better than the anticipation, hope, expectation of something that I can eat that might possibly taste good and be different than the five things I can eat, the tears and disappointment when I find myself throwing my hope, time and money down the garbage disposal, and the utter despair I feel when I think about spending the next fifty years of my life this way. Is there anyone, and I mean anyone (not the regularly touted products that I've tried already and that have failed miserably) that makes multiple allergen foods that are remotely edible? And if not, if I don't have celiac disease and most of the foods that I am allergic to are not anaphylaxis causing (except eggs and nuts which I'm not finding so hard to avoid) is there any reason why I shouldn't just eat the d&*@ stuff and move on with my life? Help?

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