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kari

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okay, long story short... a few years back, when i was away at college, i came down with a 'cold' that lasted for months. when i finally went to my university health office, i was exhausted and miserable all the time and was constantly dizzy and depressed. i wasn't going to class, or leaving my room. i slept all day. they tested me for mono more times than i could count and it was always ngative. they took blood, and apparently my white blood cell count was out of control. they referred me to a gi specialist, since i have had stomach issues my whole life, and when the wait for an appointment was too long, the nurse even said to them 'my patient isn't going to make it that long, she needs to be seen immediately." so i went to the gi, where they told me i might have celiac disease, which they said was 'a mild wheat allergy' (real geniuses, i know...). they did blood work, and told me that i tested positive for celiac disease, but that i may or may not have it. i went on to have the endoscopy, colonoscopy, barium something or other, etc., all of it is very hazy in my mind because i was soo ill at the time. then i never heard back from them. when i called to follow up, I was told that I did have some damage to my intestines, but not enough to diagnose celiac disease. they offered no other solutions, and i never heard from them again.

so for a few months, i did nothing, then one day out of curiosity i came on this site, and stopped eating gluten the next day. I felt like my personality changed immediately. i went from being tired, lazy, easily frustrated, to motivated, friendly, and happy. when i finished college and went back to my regular doctor at home, when asked if i had any allergies, I just said "i can not have gluten.' I mentioned that i went through testing at another doctor and that results were inconclusive. my doctor said something about if the diet worked, sounded like i had it, and ever since it is not something that comes up on my visits (i go there once a month for an add prescription), other than they mention it when they ask if there are any new allergies, medications, etc.

Now, a few years later, i'm feeling crappy sometimes, sometimes not. I don't know or remember what normal stomachs are like, but there are so many days when i feel like there is not enough sleep in the world for me. so many days when i have nasty cramps, or when i'm running in a panic for the nearest bathroom. still, some days i feel great, which at one point in my life, never happened. i try my best with the diet, but i do admit that while i haven't eaten bread or bread products in years, i am not always 100% vigilant. i scan every label, but if i don't see anything that screams gluten, i'll usually try it. i am careful about cross contamination. i am careful to eat enough but not too much, excersise, and sleep. i have a greater respect for my body since going gluten free.

wow, i was going to make this short, wasn't i??

at this point, i'm not sure what to do next. sometimes i wonder, what if i never had celiac disease? what if i gave up all these foods and didn't have to? why am i not a total picture of health at all times? why did my gi doctor originally say i probably had celiac disease, then tell me i didn't? what if i hadn't made my own decision and decided I did?

so my question is, where do i go from here? i remember the name of the office of one of the specialists i went to. would they still have my records? can i get those records from them? does my current doctor automatically have those records, even if i never specified that i went there?

if i do obtain my old records, what do i look for? what can i ask my current doctor to follow up on? what questions do i ask, and to who?

i know that i am responsible for taking charge and responsibility for my own health, just not sure where that starts?

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It sounds like you have already been diagnosed with celiac disease. It also looks like you really do have it since you are having what are probably cross contamination issues. You do need to check and call about vitamins etc. etc. Don't leave it to chance. Your health is at risk here.

Its also possible you do have other sensitivities too, however in my opinion its best to get rid of the cc issue first!

Bea

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It this point, i'm not sure what to do next. sometimes i wonder, what if i never had celiac disease? what if i gave up all these foods and didn't have to? why am i not a total picture of health at all times? why did my gi doctor originally say i probably had celiac disease, then tell me i didn't? what if i hadn't made my own decision and decided I did?

You DO have celiac disease. You tested positive on the blood tests and an endoscopy. Your dr wasn't up on the disease enough to council you properly. No doubt with your tests and dietary response that you have it.

so my question is, where do i go from here? i remember the name of the office of one of the specialists i went to. would they still have my records? can i get those records from them? does my current doctor automatically have those records, even if i never specified that i went there?

You call the dr's office and say you would like hard copies of your test results mailed to you. Tell them the year and month you were there. The office staff will look up your records and mail them to you. Always get a copy of any test results you have. Not every interpretation of tests is the same from one dr to the next. With copies of your test history, you can easily get second and third opinions whenever you want. You can post the blood test results as well as the endoscopy results here and there are those who can read them for you.

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you yourself said that you aren't vigilant. that means you're probably getting glutened. have gluten even once a month, well... you're going to feel like crap. and the longer gluten is out of your system, you may find the stronger your reactions when you do ingest some.

as has been noted, you call the office and simply ask for them to send you a copy of your medical records. (it's possible you'll have to sign a release first.) but you also go 100% vigilantly gluten free.

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Here is a post you made over 3 years ago, on Feb 16 2006

Hello - I am a college student and last year I had issues with ongoing fatigue and general upset stomach, etc. I was also very iron deficient as well as deficient in many other vitamins even though I have always been very conscious to eat a lot of vegetables and to eat healthfully. Also, in the midst of this ongoing health kick, I had been paying attention to eating a lot of whole weat and grains, something in retrospect I realized I never mentioned to my doctors. The school health office refered me to a G.I. specialist, who told me that I did have the antibody for Celiac disease. We then scheduled the endoscopy and small bowel biopsy, which was a month or two off, and in the meantime, I consciously and unconsciously cut back a lot on eating obvious sources of wheat, mostly because it seemed silly to eat a lot of wheat when it was possible that I was allergic to it. Once the results from the biopsy came back, I was told that I did not, in fact, have Celiac disease, even though through casual conversation with nurses I know and with people who have Celiac disease, I had heard that if you have the antibody for it, then you definitely have the disease.

Now it is about a year later, and I have been eating healthfully, including eating wheat, since I was told I had no allergy to it, and I am having the same debillatating symptoms of extreme fatigue and stomach upset and cramping. Being a student, I also have thousands of dollars of medical debt from all the doctors I went to last year, and can't afford to go back.

My question is, if there are any doctors who read this post - is it possible for me to actually have celiac disease, even though the biopsies didn't show anything, since I did have the antibody? Is there a simple test I can go to a primary care physician and ask for without going through the whole expensive process again with a rushed G.I. specialist?

Thank you

___________________

this is from feb 28 2006

After feeling generally sick and fatigued for a long period of time, I was told by a gi specialist that my iron was very low for no reason, my white blood cell count was out of control, and that I had the antibody for celiac disease and that more than likely, I had celiac disease. After the endoscopy etc, they told me they found only some damage and no signs of tropical sprue and that I did not have celiac disease. I did not go back to follow up after that and went through periods of feeling particulary run down and crappy, and periods of not really thinking as much about it.

___

when I went back for my one rushed follow up appointment with the nurse practitioner after the endoscopy and colonoscopy, all she said was that I did not have celiac disease. I had done research and my parents had talked to people they knew who had celiac disease, and I said to the nurse "I have heard that if a person has an antibody for celiac disease then they have celiac disease" She said I had one out of two antibodies that they tested for, which meant that I probably had celiac disease, but that when they did the end/col. they only found some damage to my esophagus and stomach which appeared to be from prolonged acid reflux and stomach upset, but that the biopsies which they took found 'no tropical sprue'. It was a quick office visit and she didn't seem to want to elaborate further or offer any other explanation as to why I was too exausted and run down to go to class, or why, despite daily vitamins and iron pills, I had remained anemic my entire life, or why my white blood cell count was apparently elevated to the level that initially made the school nurse panic and get on the phone in search of the closest specialist immediately (I have school health insurance and can not see a doctor outside the school unless they send me there, and of course the school health office really only deals with the sniffles, and tylenol for headaches)

so... I figured the only way I'd know for sure was to try the diet. But it's only been a week - and since I had no damage to my insides, not prolonged horrible digestive problems (like throwing up, D, etc), and read on here how everyone reacts differently, I assumed that the intolerance was mild.

________________________

On March 8, 2006, you posted that you recently discovered you had celiac disease, and had been gluten free for 3 weeks.....

so here's my dilemna.... I've recently discovered that I had celiac disease, and have been gluten free for 3 weeks now. The only people who really know about this are my mom and sister, since we are very close; my roomates; and some of my coworkers, since i work in a restaurant and food is a huge topic of conversation with us. I don't think I was hugely sensitive to gluten before being diagnosed, just general feeling tired and run down all the time for a few years that got much worse at times and a bit better at others, and had nagging stomach aches that i never even realized I had as much as I did until after going gluten free realized it was the first time in about a year i wasn't downing mylanta up to three times a day... i also had major brain fog, etc. to the point where i'm thinking that my add diagnosis was really just another symptom of my celiac disease. so - in a week and a half, i'm going away for a week to visit a close relative who is very very ill. i'll also be staying with my grandfather, who is 90 years old, and so to make a long story short, that whole branch of my family doesn't know yet about the celiac disease and now seems hardly the time or the place to start educating them about it, when there are going to be a lot of other life or death issues going on, and the last thing i want to do is be a burden in any way - i'm going down there to help out, certainly not to have people fuss over me, and even if i did try to explain the condition, my grandfather, amazing as he is, would just not understand. it took me most of my life to get the point accross that i was a vegetarian and they've only all just rececently caught on. so being totally gluten free is not really a debatable option at all, and i'm going to just have to deal with it. Of course I don't plan on purposely overloading on bread, etc., and will try to choose the lowest or gluten free options when available, but i'm sure there will be a time at least once over the week when i will be in a bind and will just have to eat what i am given and not cause a fuss over it. Does anyone out there have any specific OTC remedies that they keep on hand for when they are accidentally glutened, coping strategies, etc. that I could stock up on to prepare myself for my trip and try to have the most pleasant time possible? has any one else been in this situation soon after your diagnosis and how did you approach the situation?

_______

Ah, the visiting the clueless relatives dilemma.

Another poster gave you great advice:

_____

"....We were all in the hospital so I lived on mashed potatoes and bananas for a few days. Just stick to plain foods and you won't be a burden to anyone. It's a disease, they should be able to understand.

And for heaven's sake, be completely gluten-free or you'll be sick too, and you'll be more of a burden, not a help."

_____

This is from a year later, in May of 2007

argh. i've been trying so hard to live gluten free. i'm not overly paranoid about it though, i want to live my life. but it's seeming more and more like this disease is the most horrible unfair torture out there and i hate living this way. before i knew i had celiac disease, i spent years not wanting to get out of bed. being depressed, irritable, anxious, and feeling like there was a weight the size of one of those cartoon safes on top of my head, keeping me from being able to start at step A, then move on to step B, and progress through the simplest daily activities. school was left unnatended, bills unpaid, etc. etc. etc. as soon as i stopped eating gluten, it was like the weight of the world was lifted off my shoulders and i realized that it wasn't normal to feel the way i had been for so long. i had no idea it was possible or even normal to be able to wake up without 5 or 6 alarm clocks, get out of bed refreshed and happy and go start the day.

then i have these times where i feel like i did before. i'm miserable, moody, depressed, anxious, not to mention i can't seem to leave the bathroom for a minute. i can't stand going to work, my friendly cheerful self is replaced by some ominous beast who doesn't want to move and who loathes human interaction. not very condusive to my occupation as a bartender. and here i am, left wondering, where the heck did the gluten come from this time, why is this happening to me, why does this happen, what am i doing wrong, why is this so unfair? i do most of my cooking myself. plain veggies, rice, fruit, chicken, nothing interesting. but i work 65 hours and week and damn it, sometimes i'm just hungry. i need to eat like the rest of the population does. and then i feel bad for myself for having to go through this, having to check every label, scrub every utensil, worry worry worry. not to mention when i'm going through these glutening phases, the anxiety is overwhelming - how am i going to keep working this many hours a week? how am i going to finish college? how am i going to make up all the missed schoolwork from the years of illness while i was trying to be diagnosed with something? how am i going to deal with the stuednt loan payments while i'm on my leave of absence from school? how am i going to get back into school, fit it in my schedule, find the time, get it done, not look like a loser because i'm just too sick and tired? how am i going to stay healthy?

i know it's temporary, but every time this happens, i remember what life was like before going gluten free and how unbearable it was. but its all so unfair. i haven't knowingly eaten anything wrong. but by the moodiness, fatigue, bloating, and miserableness, that there's gluten in there somewhere. and i realize how much some of it is beyond my control. i was at work the other day and a customer was eating a pizza, it smelled so good, and i wanted some so much i just wanted to cry. i almost did cry. i wanted a bite of pizza more than i think i have ever wanted anything else in this world. the honeydew melon and apple with peanut butter i had brought with me just wasn't cutting it and i wanted to throw a tantrum like a little kid. i wanted that pizza. i didn't have one, i didn't go near it, i did the right thing, but i'm sick anyway, and i don't even know why.

i was at work yesterday and a waitress knocked over a beer which spilled all into the ice we make our drinks with. i panicked, looked at my boss and said 'oh no! what do i do?" he laughed at me, said 'nothing, it's fine. rinse it off with a little water if you want' i said 'what if someone's allergic to beer or something?' he laughed and said 'when have you ever heard of a person being allergic to beer' i said 'i am' and his response was 'really? well it's not the end of the world, it's not like you'd die or anything'

see? it makes me feel like my health is out of my hands. who's to say little spills and things like these don't happen everywhere, in factories, stores, everywhere? where do you cross the line from caution to total paranoia? how do you live a normal healthy life without being terrified of everything you put into your mouth? i've always tried to do that, and the way i feel now is what i get for being that way. i don't know what the slipup was. if it was something i caused, or if it was beyond my control, but either way, i'm paying for it this week with my health and with my sanity. had i known this was going to happen i would have eaten the damn pizza that i wanted so badly. but i didn't. i was good. and it stinks. it just feels so unfair sometimes.

__________

I am going to say at that point, I feel really bad for you, because it is obvious that our society in this country is not providing you with a support system. NOBODY should have to work 65 hours a week up on their feet, trying to cope with a looming student loan debt, old medical bills, and a WRONG diagnosis, while dealing with an auto immune condition that is exacerbated (made worse) by their job conditions is a bad economy, AND not be able to afford to see a doctor.

At first, when I read the original post from yesterday, I was going to say, well, you can't do the gluten free diet half - heartedly, it's not "some days I'm perfect and other days I'm going to be careless." You have to commit to it and stick with it.

Your post from 2008, where you said you were working doing student teaching, and were going to graduate in May, plus having ANOTHER full time job, after describing what had happened during your life, sounded inspirational.

March 2008

" ... I almost got my diagnosis. I was going to doctors in a pretty bad area near my college which was far from home, and who were not up on celiac disease or what it was. They told me I MIGHT have a 'wheat allergy called celiac disease" (moron comment number one), and after several expensive outdated tests and a lot of waiting, they still had no difinitive answer for me. I researched celiac disease on my own, brought my blood test results to my regular doctor back home, and my self-diagnosis was confirmed..... "

"This is the most rewarding thing I have done yet, I love every second of it, and none of it would have been possible without my diagnosis.

I run into people I was friends with in high school, who had tried to get me to go to school, to do my homework, to do anything, and who eventually gave up on me. Before I tell them anything about my diagnosis, they immediately comment on how healthy I look, how happy I am, and how much I have changed. "

__________

Forgive me for dragging up some of the old posts, but I'm trying to put this into context because it sounds like you are having some major brain fuzz issues in spite of being on a gluten free diet. In fact, you are now doubting that you need to be on a gluten free diet.

Okay, let's summarize.

You had symptoms of celiac/gluten intolerance. check

You had a positive blood test. check

You had an "iffy" biopsy, showing damage from reflux. check

You had doctors who interpreted the biopsy as not celiac. FLUNK.

Because of that, you missed the official diagnosis. Major fail for Dr

You had a very positive response to diet. check

Likelihood that you are gluten intolerant and need to be on a gluten free diet

very, very likely. Reason. When you cheat, you're getting fuzzed, sick, exhausted.

Now, what is going on ?

You're either getting cross contaminated, you're got additional, undiagnosed intolerances, or you've got another condition developing as a result of your original auto immune condition.

What to do about the lack of the "official" diagnosis from the past. You don't need it. When you interact with medical professionals, you tell them you ARE gluten intolerant. That's it. Then THEY have to deal with what that means. You don't need to "prove" anything. Blood test and positive dietary response= diagnosis.

If you go and get retested, you are going to flunk again. Once off of gluten for months, your blood antibodies should drop to almost nothing. The internal damage should have healed. Your likelihood of now having a positive diagnosis is much lower, unless you've been doing MAJOR cheating every day, which I doubt. So going to a doctor and asking for a retest, will not yield you a positive response.

There's a lot of us out there. I spent several years attempting to get the positive diagnosis and finally said, Oh, **** this, after having so many doctors tell me that in spite of all the damage they were looking at, my diet had nothing to do with it. I can't force them to read the diagnostic criteria and apply it to me.

What needs to be looked at. Your daily medications, if you are on any, have to be gluten free. You can contact the manufacturers via an 800 number and ask them. You may also need a test for Lyme disease. Lyme causes major brain fuzz, and it can make people gluten intolerant. Another symptom of having gluten intolerance is to develop auto immune problems with your thyroid. Auto immune thyroid problems can show up as still having "normal" levels of thyroid hormones in the blood tests, because the levels go up and down, up and down as the body attacks the thyroid. An antibody thyroid test is needed. You ought to also be tested for iron levels to see if you are anemic, or not. If you are still having issues with being able to absorb and use proper nutrients, you could be low on B vitamins, which in turn can make you anemic. Your blood sugar levels could be off, if you are eating too much high glycemic carbohydrates and not being able to process them.

You may also want to consider going off of soy products, as soy depresses the function of the thyroid. I think you said that you were vegetarian in another post, and if you're doing a lot of soy protein, that may not work out for you anymore. You might also be having an issue with dairy products. I was eating a brand of yogurt marked "gluten free" and started having major issues with it recently after a year. I cut out all dairy. It went away. I added back in aged organic cheese. Nothing. I finally ate some of the yogurt again. Major issues in a few hours. Stopped the yogurt. It went away. Ate cheese. Nothing.

Oh kay doh kay, give the yogurt to my husband. I don't know if it is a lactose or gluten problem with it, but it is not working for me right now. I suspect it is a lactose issue and they've changed their aging process. It was really annoying. I had used some of it in baking gluten free bread, and I had to make more bread without it. I had made 2 loaves, one with, one without, and I noticed the "without" loaf didn't cause a problem, which is finally what clued me in. I have another brand in the refrigerator that I am going to try on a day where it doesn't matter as much if I react to it.

We're just like walking "food contamination sensors" for the general public, which just keeps on noshing away on everything, blissfully oblivious as to what is in it.

So now you know what to do. You have to figure out what else is going on.

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To the previous sender--you go girl!

Bea

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