No Health Insurance, Confused On Symptoms. Self-Diagnose Or Pay Up?

[leafmask]

hello, all. I just joined these forums because I was recently made aware of celiac disease by my boyfriend's mother, and as I began researching, it started to look like more and more symptoms applied to me. not wanting to be a hypochondriac and start freaking out over nothing, I decided to join a group where people have actually had a professional diagnosis and are familiar with the symptoms. my issue is that since I turned nineteen almost a year ago, I was pulled off the health insurance in my state. I've had to pay out of pocket for various tests on my stomach and so far none have shown anything (I've tested for h. pylori, stomach ulcers, etc.) I've always had this illness passed off as IBS or colitis or something along those lines, while I don't feel like that's it. I'm currently awaiting a ct scan that my primary doctor wanted me to have done, but I'm on the fence about whether it's necessary, and whether there's a chance it could show evidence of celiac disease.

here's my history with symptoms..

I've had stomach issues for as long as I can remember. as a kid, I was lactose intolerant, but I "grew out of it" so to speak. now recently these past few years, I've started to feel sick constantly. it's worst when I wake up or a few hours after I eat anything it seems like. there will be a constant pain in my abdomen area, and often I feel like throwing up, but I never do. this sometimes forces me to go a few days barely eating anything, then eventually I will need to make myself eat, which makes the feeling worse. when I'm not stressed out and I'm eating as normally as I can, my bathroom habits are completely normal, which is why I feel skeptic about this being IBS or something colon-related. although at times, I do only have a bowel movement every 3 - 4 days because I can't eat very often.

another symptom of celiac disease that stood out to me is the missed menstrual periods. from November 2009 to about March of this year, I hadn't had a period at all. before that, they were very irregular, for no apparent reason. I'd had tests done and nothing was found in that area. there was literally no explanation for it, and I wasn't on any birth control or pill that would have messed with that.

there are other things that lead me to believe this is possible. I often feel weak and tired, and I don't feel like I get much out of my food. my vision is terrible and is getting steadily worse each year, and I always bruise too easily (I currently have about eleven bruises on me and I can't tell you where they came from because I have no idea). I feel like I want to do things but lack the energy often. I'm beginning to wonder if it's because I'm not absorbing enough nutrients from my food.

I do eat a LOT of food with wheat in it, it's been a huge part of my diet for awhile, so there's a definite possibility that it's consistently affecting my stomach.

my main issue here is the lack of health insurance. if there's a possibility I can get a test done, I wouldn't want to self-diagnose and go on a gluten-free diet, because it would skew the test results. at the same time, depending on how expensive testing would be, I'm wondering if I should try just to see. I just have no idea where I'd begin, and I'm afraid it will be more expensive to search for specific foods. I only have a part-time job with no hours right now and I'm scared this will take a toll on me if I have to stick to a specific diet. I'm willing if it will get rid of this persistent pain though.

do these symptoms sound familiar at all? any advice at all is appreciated. thank you guys. I've been at a loss for so long, here.

[Marilyn R]

Be forewarned, this may be bad advice! At first I was going to suggest that you call your last dr. and request a blood test without an office visit. Then I thought about how many false negatives there are, and that even if you had a positive blood test, your doc would want to refer you to a gastro for an endoscopy and that's big bucks (anesthesiologist, radiologist, gastorenterologist.)

So. Try the gluten-free diet. If it works, great! Woo hoo! You saved money you didn't have to spend on expensive diagnostic procedures that have a fairly high error of margin.

gluten-free doesn't have to mean expensive, BTW. You don't have to buy gluten-free processed or packaged goods, but you do have to learn and cope with cooking like your grandparents or GGparents did. That's a tough row to hoe at first. But you can look at like an enlightment, there are so many really good things to eat, just take a peek at the numerous blogs out there on gluten-free.

You won't have the diagnosis, but that's not necessarily a bad thing. Gluten intollerance is receiving more attention in the medical community. If you're dx'd with celiac disease, you may be denied life insurance according to a post I read on this forum.

I talked someone who's in her 70's to going gluten-free. She started having normal BM's for the first time in years. (I saw that vacant look in her eye, the skin pallor.) She eats gluten again now and is doing fine.

Listen to your body, start a food journal, see what happens. I feel for you being so young, I know you want to be out, and I've found you can't trust most restaurants and parties.

[leafmask]

thank you, that is actually very good advice.

I'm following sliding scale fees so I do have an appointment set up with my primary for Tuesday. the office visit itself will cost me $20, but I'm going to ask about getting labwork done just to see if it's a possibility and if the sliding scale would put a dent in the price of celiac disease testing at all.

luckily I am not big on parties and I eat at restaurants infrequently unless I am going for the social aspect with a group. sometimes I tend to feel sick just from the smell of food at restaurants, even though I know I'm hungry. I think it might be my body just anticipating the feeling that will come afterwards.

if nothing can come of this doctor appointment and there isn't an affordable possibility for me to get testing done, I think I will try the diet regardless. even if I were to get a test done, I've read experiences on here stating that it's not too uncommon for a negative diagnosis to come up, so I would probably go gluten-free for a while even if it did.

it helps a lot to hear from anyone that has experience with this. I've been told so often by doctors that I just need to "eat more" and that it's impossible to have anything I suggest because I'm "too young" and "my immune system is fine", etc.

[NorthTX Joseph]

I am new to the Forum, and in a similar situation to you, as I have no insurance and currently cannot really afford a doctor's visit bill, let alone cost of a possible biopsy, but at the same time cannot go on much longer apparently being unable to digest most of what I have been eating in the last 7-10 days. I am older (43), a full-time grad student, and in the past month have had increasingly worsening symptoms, and have lost maybe 20 pounds, but I recognize signs going back longer that seem to fit (gas, pain, diarrhea, after eating particular foods.....and an unusal bout of mouth ulcers about 6 months ago when I almost never have had them before, etc...). So I just started yesterday trying a gluten free diet, and figure that if it works, then it would probably stand to reason that celiac disease might be the culprit. Initial signs are that the symptoms seem to be slowly starting to lessen.

If it doesn't work then a doctor or ER visit might be unavoidable. But I would also say that even if the diet does work, at some point seeing a doctor is necessary, as there can be other disorders associated with celiac disease and celiac disease itself can increase the risk of certain diseases.

One thing of course is that if you are on the gluten-free diet, the diagnostic bloodtests won't work anyway, as you are supposed to be tested on a regular gluten diet, and I don't know if any doctor will diagnose it based on history alone, without tests or biopsy results. As for me, if the gluten free diet works, I don't want to eat gluten just to get a diagnosis! I have had enough unpleasant effects to last me awhile.

Or that is how I see and understand it.

:-)

[Skylark]

Order a Biocard test. They are sold in Canada and can be shipped to private citizens in the US. They're around $50 plus shipping. It's only a TTG test rather than a full celiac panel, so there is a chance of false negatives. If it comes up positive you know something is going on.

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Then as everyone else has said, give the diet a try.