Extremely confused and not sure what to do.

[Luv2Dance]

Hello Everyone.
I have been reading on the forum for ahwile now, and you are all so helpful and wonderful. I want to thank you for all of help you have been giving. I'm new, and I really need some help please. First, I'd like to apologize. I have never ever posted to a forum before, and so I have no idea really if I am doing this correctly. Secondly, I'd like to apologize because I tend to get very wordy. I'll try not too, but I have a hard time formulating questions and tend to give the history of it... I apologize up front if I bore you or take too much of your time, but I really need some help.
About a year ago we discovered that my mother was allergic to wheat, all dairy, eggs, and grapes. The doctors suggest that I get tested saying that allergies like those are genetic. To back up, I had been feeling sick most of my life going from doctor to doctor to find out what was wrong- exhaustion, mental cloudiness, bouts of constipation with bouts of diarrhea, frequent sinus infections, frequent illnesses, long time to get over any cold or sinus infection, acid reflux, weird rashes, mood swings, cramps, etc, etc.... One time I went to the doctor BEGGING them to do some sorts of blood test because I KNEW something was wrong, but didn't know what. She told me I needed to be on stronger anti-depressants because I was just depressed and nothing was physically wrong with me... I wanted to scream at her, "I WOULDN'T BE DEPRESSED IF I WASN'T ALWAYS FEELING SICK!!!"
Anyway, I've done some tests and found out to be allergic to wheat, spelt, all dairy (especially cassein and whey), eggs, and a few other miscellaneous things. After getting off a bunch of the stuff, though not religiously, I felt 70% better. Not 100%, but 70% better.
I'm so sorry this is so long. I just don't really know how to shorten this.
My question is- do I have Celiac disease? Or do I not? What do I say when I go out to eat with friends? Just that I have food allergies? Or that I have Celiac disease? How do I define myself?
Furthermore, how important is it to really get rid of all of your make-up and pruchase gluten free stuff? And is there at all an easier way to go through everything in my house? I'm a total packrat and have a huge box of bath products that people have given me over the years.
How do I know how important it is to stick to gluten free everything? It seems like such a waste of time, energy, and money if I don't truely have this. What about band-aids? Lotions?
It took me forever to clean out one kitchen cabinet and go through everything. What about the rest of the house?
I'm frustrated. My fingers crack and bleed, but I broke out in hives from the bandaids I put on. I was kicked in the face by a horse and my teeth were knocked out and jaw broken, so what I can consume is limited already. I really need your help. I'm emotional. Limited time, yada yada yada.
I have one doctor that thinks I have Celiac, I have one that swears I don't, and I have one that doesn't know and says that its better not to have it in my medical file anyway because its an autoimmune disorder that would cause insurance problems in the future- because of that, I don't want to get confirmatory tests, but should I? How accurate are the tests anyway? I read that they are not. So how do I know if I have it? My fecal test through Enterolab was IgA positive at a score of 36, much higher than the normal 10. Could this have been rediculously high because I ate oreos the day before, or is it accurate? But my blood IgA was 280, within the normal range of 81-463. And my Transglutaminase IGA AB was less than 3, which is within normal range for less than 5. But I think I didn't eat gluten for a week or two prior to these blood tests. I'm not sure. My IgG and IgE tested postivie for the before mentioned food allergies. I did not test positive for soy allergy. My question there- how should I still avoid soy? I love soy!
Any help would be really appreciated. I've been so side-tracked and stressed trying to figure this all out. And I firmly beleive that if I had known of these allergies before the accident with my horse, I would not have swelled up like a balloon because I was living on ice cream and had my face become partially parayzed. The doctors said the movement would come back. Its been 5 years, and it never has. They said I swelled up unbelievably large, and didn't know why. I wish I had known all of this sooner. Thank you in advance!

[voix]

Well, I've had some confusing and long, drawn-out health problems, so I will take a stab at your questions.

When things are multifaceted and become overwhelming, it is good to take smaller steps and address things one at a time.

1. Because a lot of the confusion comes from a lack of definiteness, it might be good to know one way or another if you have celiac or not. I think that would be a good place to start. Consider first, however, if you really worry about having that in your medical file. Only you can decide this.

I am not well versed in the celiac testing, but this is my understanding. CONFIRM THIS. To be tested for celiac, one needs to have a blood test--and then if that is positive, one needs to have the biopsy. If the blood test is negative, then you might still want to have the biopsy as sometimes blood results give a false-negative. Some things that I read say that you have to eat gluten to get an accurate test for celiac. However, a nurse at my doctor's office said that the indicators stay in the blood for a year regardless if you are eating gluten or not. So find out the bottom line on this. IF you need to be eating gluten before the test, start eating gluten and take the blood and/or biopsy tests.

2.A. If the celiac test is positive, then you have to be unyieldingly strict on avoiding gluten. I would avoid all products with gluten in them as well during the initial weeks or months while you heal and get stabilized. Then when you feel clear, try a product with gluten and see if you react. If you don't, it may be okay. Or just find a substitute product from the beginning and play it safe.

2.B. If the celiac test is negative, then you might want to be unyieldingly strict on avoiding gluten for a few weeks and then test a meal with gluten to see how you react. If you feel worse, avoid gluten. Seems like many people here don't have medical tests supporting how bad they feel after eating gluten, but just avoid it all the same. It would make sense that if you feel bad from gluten, be strict and don't eat it.

3. After you get used to not eating gluten, if you determine that that is important for your body, you might want to locate Elimination Diet instructions. Then, follow the commonly non-allergic diet for a set amount of time and see if your body feels even better, stronger, more stable. Then begin to add in new foods, as directed, as see if you react to that new food. This is hard, but I think that there is no substitute/short cut.

4. What to tell your friends or family? You have a choice to not say anything until or explain as you go or something in between. You could just know what foods you are allowed to eat and only go to restaurants that you know are safe. Then just order what you want and not say anything to anyone. You are an adult and can choose what you want to eat or not without justifying yourself to another. Or you can wait until you know for sure what is wrong and then explain it as you go. You can say you have a disease, if that is the case, or you can just say that you don't feel good when you eat: x. Finally, you can explain as you go, what you are doing. Sometimes, family or friends don't understand extreme sensitivities, so add more aggravation when you confide in them. My experience any way. If you are worried about cross-contamination, you may have to mention something, unless you can just decline eating something without explanation.

5. Bath and Body Products: If you don't know what is in them, why not research the product online? If that doesn't provide you with ingredients, you might want to play it safe and get rid of them--UNLESS you have determined that you do not react to topical gluten.

6. Energy level and confusion: I think once you feel better, your organization and energy will come back. I have chemical sensitivities to small amounts of common chemicals like perfume, most body products, especially with perfume and parabens and formaldehyde releasers, carpet, paint, processed furniture, petrol derivatives, including vinyl and some other plastics, cleaning products, etc. I get brain fog and exhaustion and pain when exposed. Maybe something other than food is contributing to your problem. Additionally, pharmaceuticals are traumatic for my body. Consider that you are having a bad reaction to your meds or med combination. Don't make any changes to meds without consulting your doctor--it could be life-threatening. Also, you might want to consider getting blood tests for adrenal, thyroid, and levels of vitamins and minerals. These can be effected by celiac, pharms, illnesses, or other.

7. Teeth and Horse Accident: I am not sure that I fully understand this issue, but from what I gathered, you were tragically kicked in the mouth by a horse and you lost several teeth and your head swelled up. This was five years ago and you still have paralysis.

Again, I would address this systematically. You may have already done these steps, so I apologize in advance if you have. (a.) I would go to a dentist or a dental school clinic and have your mouth thoroughly examined for infection, including the surrounding bone. I would get replacement teeth (you seemed to mention that this accident affects what you can eat) that allow you to eat properly. Address any nerve damage issues with the dentist. (b.) I would go to a neurologist and get all the exams and imaging tests that he/she suggests. Follow up as recommended. (c.) I would go to a cognitive psychologist to get cognitive functioning tests--if you think that the accident affected your cognition. (d.) You might also have tight muscles squeezing on the nerves affecting paralysis--I had that in my face. The solution is to use a neuromuscular massage therapist to break open (my words) the muscles and teach them to relax--there are ones that even work inside the mouth. Physical therapists at pain clinics also specialize in teaching muscles to relax and be normal. I also took medication (ativan, sublingually, as a muscle relaxer, and oxycodone as a pain killer/muscle relaxer) to teach the body not to chronically tense up due to pain. Again, make sure there is no contraindication with the other meds you are taking.

I know it is overwhelming, but you just have to start with the obvious problems and work step by step towards understanding and a solution. It is overwhelming, I know, but just focus on each day. Good Luck.

**Readers, Please offer corrections if you feel that my understanding (esp. of celiac) is incorrect.

[Luv2Dance]

I really appreciate all of the time it has taken you to reply to my questions. I still have more questions for you and anyone that knows, and will answer you where I can. One is that I'm really scared about having a permanent diagnosis of Celiac in my insurance record. With the pre-exisiting condition of my accident with the horse, I do not want an auti-immune disorder diagnosis in my insurance file. My husand and I already applied for extended life-insurance to help pay off my medical bills and student loans in case I passed away in one of my reconstructive surgeries (or something else tragic happened to me), and was denied. I'll be changing jobs soon, and lay-offs are always a worry- I don't want to risk not being insurable.
Is there another way to formally find out the diagnosis without going through insurance? Maybe I shouldn't even bother and just live like I have it to feel better. What's the validity rating for the tests I already had? Is the Enterolab possibly correct in that I do need to avoid gluten for the rest of my life? Or could that have been a false positive? Perhaps the blood tests were correct and I don't have Celiac- although I do see that they can give false negatives.
Recently, I have been working very very hard at eliminating gluten, and my other allergens, from my diet, but am confused as to how much I have to eliminate it from my lotions, bath products, make-up, etc.
I suppose I'm willing to eat gluten free for the rest of my life if it means feeling better and being healthy, but how is this even possible when products constantly change their ingredients? And its so difficult to live gluten free, it sure would be easier if I didn't have to. Will I ever know for sure? And when you go to the store and they don't have what you know you can have, do you just not get what you need or purchase something and look it up on the internet when you get it home hoping that you haven't wasted the money? Seriously, how do you shop with this?
And then, I've never broken out in hives from band aids before. Yes I have from medical tape, but never from bandaids. I'm beginning to think I'm paranoid, or is it possible for strange allergies to pop up later?
Honestly, I felt so much better going off a lot of the foods a year ago, but I didn't stick with it like I should have and now I have a bunch of questionable products and questionable health concerns. This rash on my leg, could it be because my lotion had oat in it? Or is it because I was eating Rice Krispy treats every day not realizing it had the barley malt in it? (stupid me stupid me- palm to forward, foot to bottom)
As for the elimination diet- I will admit that it is an excellent excellent idea. However, I'd like to admit that I am horrible horrible about listening to my body and really knowing what is going on. It took eating portebella mushrooms 3 times and getting horribly sick each time before my husband finally told me I was allergic. I just thought I had overeaten!!! Call me a quack- but I come from a history where I was told to ignore my issues and get control- mind over matter type of thing. Just great for learning how to ignore pain. Horrible for learning how to listen to yourself and your bodies response. I don't know how to do that. At least, not yet. I haven't learned yet. I'm afraid the elimination diet would be a massive failure because of this.
As for the issue with being kicked, I have been going through reconstructive surgery for the past five years. My last surgery was October and I'm on limited foods for a full year while my bones in my face and my jaw sets. Nothing hard. No nuts, no fresh vegetables, no steak. (Bummer.) So food is already difficult for me already. I've been living on soy yogurt, jello, apple sauce...and those darn rice krispy treats that I just cut out..
My mother had colon cancer. She is going for another colonoscopy soon to make sure the polyps are gone. She has lost drastic amounts of weight, and the doctors are worried. I think its because she doesn't eat enough. But she continues to eat what she is allergic to. I've asked the she request them to check for Celiac while they are there. Perhaps if she is positively diagnosed, I will know I most likely have it? If not, I still don't know.
Maybe I should just quit my whining and live like I have it and forget the diagnosis? Be strong, buck up kiddo. Right? Maybe I am making a big deal out of nothing? Maybe I shouldn't worry about the money and just toss everything and start all over with known gluten free products? I don't know. I tend to overthink things. But this is a lot. And I don't have money to spare to just really toss everything. Especially if I don't have it. My husband says I need to just forget the stupid tests and live like I have it. I felt so much better last year when I was more strict. I don't know.
Thanks again in advance for your help.

[Luv2Dance]

You mentioned some sort of tests for vitamins and minerals? What would I ask for? Do I just go to my PCP? Thanks for all of your help!!!

[cruelshoes]

Hi Luv2Dance. Since you are new to forums, I will tell you that any text you see as blue is a hyperlink. Click on it to get more information. Please forgive me if I don’t answer all your questions, but I will do my best.

[voix]

I totally feel for you! You don't deserve it; you've suffered more than your share. It's brutal, but I don't see a way around it. I would use that path myself if it existed.

I had to give up a lot of things, so I know how hard it is to do so. I mentioned before that I have chemical sensitivities. It was a result of being poisoned. I am acutely sensitive to small amounts of toxins that are in everything fun, pretty and luxurious in today's world. I've already been broken in about giving things up as a result. I feel better when I avoid them. There is also the risk of permanent damage if I don't. But I fought it.

So, finding out now that I have this gluten sensitivity is not as brutal and traumatic as it would have been a couple of years ago before I had to give other things up. This is because I have already grieved and fought giving up beloved items every step of the way. (I still have my favorite perfume wrapped in a bag in my fridge for the miraculous day that I spontaneously recover and can tolerate poisons again.) I have had to find substitutes for things I loved: hair products, makeup, detergent, furniture, cleaning supplies, etc., and change behavior and activities and in some cases friends and family.

So, what I am mean is that if you are indeed sick from gluten and other foods, you may have to focus on what you can have and give the dangerous things up and then when it comes, focus on your beautiful skin, flat tummy, extra energy, happy mood, and delicious substitutes. Think of what is making you sick as something bad and feel lucky that you are rid of it. That might make it easier.

If you don't feel like doing it yet, then don't. It took me a long time to psychologically give up forever certain things that I love. I got sick, but I guess for me, I wasn't ready. I tried three "safe" polishes, for example, and they all made me sick. Not smart, but I just wanted to be normal; to have girlie products (to fight a losing battle, I guess) on some level. But if these things are dangerous, the sooner the better.

One thing for me, I have only given up gluten this week and already can tolerate chemical exposures-like at a store--better. My skin is prettier, and I just feel less pain and a bit more energy, pants button. I am so worn out that this is the path of least resistance. And it is nice to see results and I hope to focus on that.

You could just live as if you have celiac without getting the test, like your husband says, and just accept it. I like your husband! How great that he is just so strong about what makes you feel better and is willing to face this head on. That is really a gift. I had a lot of problems with people close to me when I had to give things up.

You could also go to another doctor, a specialist, and order the blood test without giving your social security number and pay cash--no insurance claim, and don't use that doc for anything else. I think it is about $150 at the most. Then you could have the result but no one else would know. I think that would work. Its not illegal as far as I know. I don't think things like that are reported. Nor would patient lists be searchable, as far as I know, by name only. Even if you did give your ssn, if it wasn't submitted to insurance, how would they know? Now, if you went to your current doc, that you submitted to your insurance already, I think you sign a waiver that insurance has a right to look at that doc's records of your treatment, so it could be discoverable even if not submitted to insurance for payment as it would be in the file. Asking that doc to not submit to insurance is probably fraud.

I guess, a lot of your questions are only answerable by you. What's more important for you right now?

How much to give up: I personally would say, all of it to be safe. If you don't know what is in a product, don't use it or buy it. Just use stuff that you KNOW is safe. Once you are stronger, you could try something topical that has gluten in it and see how your body is. If you can't read your body, then you use it for a certain length of time and then get a blood test to see if you are reacting to topical products. You would know if everything else in your life was gluten-free that you would be reacting to.

It can be brutal and expensive as you figure things out. I don't see a short cut. You have to learn what is forbidden and find out if it is in the product. In the past three years of finding subs for hair and body and cleaning, I have given a lot of stuff to bfs, family, etc., or just tossed it, if it was too offending and I didn't want it on someone that I was around either.

I think if you are avoiding only gluten, though, it is not so hard to find substitutes for body products.

After giving up ALL my great make up and hair products, I went through last week to see if any of my substitutes have gluten in them. Guess what!? My beloved lip balm, organic, toxin-free, with Vit. C for collagen production, has wheat in it. I've had chapped lips for two years. I tossed it, but didn't want to. Started using Jane Iredale lip balm and my lips stopped being chapped. So that is nice that there is a difference for the sacrifice.

Regarding the testing: again, I am no expert or even that well-versed. My understanding is that for some reason the Enterolabs test is not always accepted, but some docs use it. I don't understand the controversy. My doc used them. I had a score of 266. I also just had the same doc draw the blood today for the celiac test, because I will always be waiting to eat gluten again otherwise. I also need a definitive answer for other reasons. If the blood test comes back positive, I will probably not get the biopsy, as anesthesia medication is very hard on me and my body really rebels for weeks and weeks after there is some sort of invasive procedure on my body. If it is negative, I am not sure what I will do, as I do know that there is a gluten problem (but is it celiac or is it a result of all the other problems I have from being poisoned?). I probably would eat gluten again for the recommend time (as I will have stopped for about 3 weeks by then) and then get the biopsy.

I totally understand the part where being strict is not how you want to spend your time or that you are already dealing with so much, plus you don't want to waste money.

Oh, I also broke out in blisters from a bandaid. I thought it was my chemical problems and I was reacting to latex, plastic, or adhesive. Maybe it is a celiac deal if you did, too?

You could keep a food diary to help you figure out your body, if that is what you choose to do. You write what you eat (and what products you use) and then write about symptoms or the opposite of bad symptoms. It actually does help, though I always think I will remember, but patterns develop that are easier to see when written down. (I did it once and it helped explain symptoms when my body was technically normal.)

My understanding with the genetics of celiac is that there is a connection but it is not absolute. Plus, some people have the genes but it is only expressed after a physical or emotional trauma.

I am sure I didn't give you all the hard facts that you are looking for. There are other posts in other forums on this board that talk about testing, etc.

[voix]

CRUELSHOES:
[I won’t fully believe it until the kimono is open, so to speak. ]
I've never heard that before; so funny.

[aklap]

Yeow! I don't have anything add right now other than to offer up my welcome to Luv2.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[celiacmaine-iac]

Seems overwhelming doesn't it? I think the others have covered most of your ??'s, so I don't have much to add.

About the insurance. I wouldn't be too worried about it. Like Colleen said, if it's insurance from a workplace you should be eligible to be covered automatically. At the worst, they might put a one year hold on covering you for pre-existing conditions. Insurance laws vary by state, but I think you should be ok. You could always call your state's insurance commission, and ask if a formal diagnosis could cause you problems in the future. edited to add: When I say they might not cover you for a certain length of time due to pre-existing conditions, that might include other diseases that could arise from the pre-existing illness. Like I said, probably best to check with your state's insurance commission if any questions. Sorry if I didn't make that clear. Was very tired when typing that last night.

There are lots of threads here on eating GF "on the cheap". When you decide to go GF, yell, and someone will pull up those threads for you.

If you have a bunch of soaps and shampoos that you might be getting rid of, you could consider donating the unopened ones to a battered woman's shelter. Women in these shelters leave the situation they've been in with literally the clothes on their backs. Shelter budgets are always tight, so donations are always welcome. Same for foods that you haven't opened or used that may contain gluten.

Good luck. Keep asking questions, and know that we're here for you.
_________________
Steph

[nancw]

[Fifi]

WOW! I have been here for a while and I just want you guys to know that I am so impressed with all the information you gave. There is so much to learn in the beginning and I got so much out of your posts. Thanks

[voix]

/

[Luv2Dance]

Hello Everyone,

I want to thank you, thank all of you, for all of the wonderful wonderful support and information. I truely appreciate everything- the technical support, the emotional support, and the "tough love".

I read all of the posts lastnight after coming home from school, and am so appreciative of everything. I wasn't going to post until later tonight, when I had time to thoroughly research all of the posts and respond to each of you individually. I want to put some time and thought into it all.

But really quickly I just wanted to say thank you. I have researched some of it already- looking into forms of diagnosis, and other tests, and making decisions regarding these. I started a food journal and "how I feel journal," started cleaning out my kitchen, and I did follow some of your advice already. I called my PCP to see about getting the vitamin and mineral tests done, and check for a soy allergy. But they said that they "don't beleive in those kinds of tests and are a western doctor, not an eastern doctor." Blech. I was pretty surprised. But, they do want to check my thyroid, so that's a start. And I called the doc that first said he thinks I have Celiac a year ago to follow up with him and go over some stuff.

Its 73 degrees in my house and I'm freezing wrapped in a blanket. Blech. Will I stop always feeling cold? How long until I start to have "normal" amounts of energy and not feel so exhausted all of the time? I guess these questions are hard to answer because they are so individual...

So please know that I appreciate EACH and EVERYONE of you and the time that it took to respond to me. I'm going to keep reading, and hopefully I can respond more tonight (if you guys aren't sick of me yet?) And please forgive me if my responses are delayed at all, trying to balance everything is becoming difficult, and I eventually have to get caught up with homework.

Thanks again!

[Luv2Dance]

Hello Everyone, thanks again for the info.

Question- how important is it to get the vitamin mineral test? My PCP doesn't believe in them. Do I need to pursue this?

CruelShoes,

Where to begin? Thank you for the links and instructions on using the forum. Its a great help. I noticed that you said you frequent more than one forum. Is it okay to post to more than one forum? I didn't know if that was taboo since I'm so new to this. But I've been reading a lot of one other forum as well, although, I haven't posted there.

I don't want this to sound the wrong way- but hearing you say that I probably very likely have Celiac was a huge relief to me because maybe if its true, I can start to get better. I know where to start, what to do, to heal. I heard such mixed information from my doctors, that I didn't know what to beleive or what to think. I know that you are not a doctor and that you can't say for sure or diagnose me, but hearing from you- from someone who is experience and has been down the road, that I probably have it, is enough confirmation and support for me to follow through with going gluten free. And the fact that I felt 70% better when I cut it mostly out of my diet, with the other food allergens, is also confirmatory that I should have probably gone all of the way gluten free and religioulsy stuck to it.

Yes- you are right, not knowing 100% for sure whether I have it makes me waffle back and forth about giving all of my stuff away. I'm hoping that I can truely stick with it this time. I'm hoping that I can reach out to this forum and my husband for support when I need it. I have already started to clean out my kitchen. But I have no idea how to approach my bathrooms... Do you have any suggestions? I prefer natural items to those with chemicals. I have loads of medicines and bath products and make-up to go through.

I disagree witht he doctors that say topical gluten can't hurt. But what do I know? Nothing? I'm knew at this. But every surgery I have they put a compazine patch behind my ear to keep me from throwing up, and people use those nicotine patches to quit smoking. I don't know the difference in molecular structure, but it stands to reason that if we can absorb chemicals through our skin, that we can absorb gluten. Do you think? And I have repetively broken out in hives when they use the wrong kind of medical tape on me, perhaps there is gluten in the adhesive? I don't know.

As for Enterolob, I have heard as many mixed reviews about it as I have for some of the blood tests. I have one doctor that swears by it, and one that says its no good. I have no idea what to believe anymore. I am going to hold off on the formal diagnosis with the cleiac panel, and just try to go gluten free with everything. I'm honeslty going to try to adopt the zero tolerance policy. I think I'll need help with this.

Please- how does one shop gluten free at a regular grocery store? Besides fruit, vegetables, and meat....

I called my mother to inform her what you said about the colonoscopy. She is going to call her doc and talk to him, but I doubt she will add the endoscopy. I don't know.

voixactuelle,

I'm sorry to hear about all of your difficulties. Can you please explain to me about the poisoning? I don't understand. How does this effect your allergies today? I've worked with people that were extremely sensitive to chemicals and we had to wait until they were gone to clean, and one would request that we didn't wear any deodorant or smelly hair products when we worked with her.

Is your gltuen sensitivty a by-product of being poisoned? Or vice versa? Have you been able to do any cleanses that would help?

You are right- I need to focus on the positives of feeling better after going gluten free and giving stuff up and not get stuck on the negatives. I am a pessimistic person unfortunately, the glass is half-empty kind of person. Perhaps this will go away when the depression lifts and I feel better more often?

I started the food diary and how I feel as you suggested, and have been looking into the other things you have mentioned. I am glad that you feel better after one week of gluten free. This gives me hope.

Aklap, Thanks for the welcome!

celiacmaine-iac,

Yes, you are right. It is very overwhelming. I have been having emotional mood swings between joy of feeling good soon, and anxiety and frustration of wondering how the heck am I going to accomplish all of this!

I was staring at my bathroom last night thinking, "If there was a celiac specialist that I could just hire, to come over to my house one day and go through all of my items, and help me list out what I can and can't have based off of the products that I already use, this would be sooo much easier!!!" Of course, that would probably cost a fortune. Maybe we can start our own companies and do this for others? Maybe after I've been doing this for about 5 years, I'll know enough. I feel like its going to take me that long to get this.

Thanks for the insurance advice. I keep waffling between a formal diagnosis and not. My PCP plainly doesn't beleive in this, so I'd have to find a whole new doctor, or come up with the $400 that it looks like the test costs that Cruel Shoes gave me the link to. Because of the time and money involved with that, I've decided agaisnt the formal diagnosis for now. I will just go with how I feel, as many of you seem to do, and the fact that everything seems to point to the idea that I have Celiac.

I still toy with the idea of what to call myself. I think at restauraunts I'll just say I have food allergies. That seems plain and simple enough for them to understand. I'm tired of giving my friends and family the long drawn out, "well, some doctors think I have Celiac, but we aren't sure.. so blah blah blah..." I usually don't like definitions, but this one seems like a valuable lable to have as far as just knowing what to do and what not to do.

Thanks in advance again Everyone!

[aklap]