Opinions Needed On Testing, Doctors, And Symptoms (kinda Long, Sorry)

[darkmoonsinger]

Hello, all--

I ran across this board during a search for tips/help/opinions on the elimination/challenge and am hoping that someone might have an opinion that could help me out. I apologise in advance for some TMI and the length of this post.

I'm a fairly large 23yo girl. I've always been big, but 2 springs ago, out of nowhere, I put on 60 pounds in a month with no lifestyle change. I've always had intestinal issues (sorry to be explicit here), including diarrhea, large volumes of sulfurous gas, et cetera, with occasional intestinal "attacks" of worse-than-normal symptoms, including intense abdominal pain.

My best friend was just diagnosed with Coeliac Disease a year ago and encouraged me to look into it. Now, for years doctors have been telling me that most of my problems (inability to lose weight, slightly high blood pressure, asthma, constant hunger, et cetera) are simply because I'm fat.

So, when I reacquired health insurance, I went to my new GP (ah, school health) and demanded allergy testing. The skin test for allergies came back clean, and the bloodwork for celiac disease came back negative (though I'm not sure which test(s) they did). I went to see a GI doc, and she saw me for all of 5 minutes, not even listening to what I was saying. She had me do a breath test for lactose intolerance (I was lactose intolerant as a kid) and one for bacterial overgrowth, both negative. She did a colonoscopy with 3 biopsies, all clean (which I woke up during... OUCH). I have an appointment in a month (for frame of reference, 2 months after the colonoscopy).

So I decided to do an elimination diet and challenge. I cut gluten out of my diet (not immediately; I managed to contaminate myself within 6 hours... a record, I'm sure) while still at home, though my grandmother's hospitalization and death complicated that (we ate out a lot, so even though I have the nifty "this is what I can't eat, and please clean your utensils" form from the Food Allergy & Anaphylaxis Network, I can't be sure I wasn't contaminated). That was a week long, then another 3 weeks when I came back to school, because I got contaminated almost at the two-week mark (some lovely individual at the dining hall was nice enough to use one pair of tongs for all the food, including the pasta, even though each pan had one). I got contaminated a couple of days later by cheese sauce that I thought was 'clean'. I can't scientifically verify that either of those made me sick, of course, but I'm pretty darn sure.

I've been making my own lunches, eating verifiably 'clean' food at breakfasts, and special-ordering from the managers at the dining hall for dinner (they're great! they have gluten-free pizzas, chicken nuggets, and fish sticks in the kitchen and some assorted dry goods in a wee gluten-free bar). I've been making sure not to use "common use" condiment jars, etc.

And I've felt amazing. I'm in graduate school, so I know quite well about stress, but I haven't much cared or gotten wound up over it. I've just felt *good*. I haven't felt this good in a very long time. ...And then there's my pants. I've been hanging on to 4 pairs of pants from before the 60-pound gain, that didn't fit even 3 months ago, and when I tried them on last week, they closed and fit (okay, a little muffin-topped, but I couldn't even CLOSE them 3 months ago). I just stood in front of the mirror crying, because I haven't lost all that weight, but my clothes fit again. I've also been amazingly constipated (sorry, TMI, I know), which I was warned could happen. I haven't been ravenously hungry 24/7. I haven't been going to bed and dreaming about breakfast. In fact, I just learned yesterday that people can be nauseous from hunger without their stomachs rumbling and screaming for food (this was a major revelation to me that the people I was talking to gave me weird looks for).

So, last night I decided to challenge. I ate a TON of gluten-containing stuff (a bun with my hamburger, some mac & cheese, cheesecake and cookies, etc), and for the next meal (pizza), and then for breakfast (croissant sandwiches) and tonight's dinner (breaded pork chops, pasta, etc).

Nothing. I'm not sick. Last night I was mildly ill, but it was so mild that it didn't even really count as abnormal. I've been irritable and depressed, but that I think I can chalk that up to school stress and worry over this challenge (I've been told for so long by so many people that this is all in my head or because I'm fat, and I'm terrified that if I don't get sick from this all of my feeling-better will have been in my head and all my fault...). I'm just coming off of my period (sorry, TMI), which I don't think should affect it, even though I do normally get a little diarrheal right before it.

Thoughts, opinions, anything? I will appreciate anything you can tell me. And again, I apologise for the length of the post.

Desperate,

~Jamie

[maile]

So, last night I decided to challenge........

Nothing. I'm not sick. Last night I was mildly ill, but it was so mild that it didn't even really count as abnormal. I've been irritable and depressed, but that I think I can chalk that up to school stress and worry over this challenge (I've been told for so long by so many people that this is all in my head or because I'm fat, and I'm terrified that if I don't get sick from this all of my feeling-better will have been in my head and all my fault...). I'm just coming off of my period (sorry, TMI), which I don't think should affect it, even though I do normally get a little diarrheal right before it.

Hi Jaime!

there are many people who are gluten intolerant who experience gastro symptoms in a delayed fashion....I'm one, If I get contaminated the first thing that goes is my ability to focus, then I get anxious and down/depressed and then 24 hours later the D hits! I usually only get the pain etc if I have a couple of contaminations in a row but the mental symptoms are there right away.....if you read this board for a bit you'll discover that there are a few distinct reactions to being glutened and not everyone experiences it the same way.

If you felt amazing going off gluten then continue doing it...as many have said here you don't require a doctor's permission to do so and what's most important is that you feel well!

good luck!

[ravenwoodglass]

Hi Jaime!

there are many people who are gluten intolerant who experience gastro symptoms in a delayed fashion....I'm one, If I get contaminated the first thing that goes is my ability to focus, then I get anxious and down/depressed and then 24 hours later the D hits! I usually only get the pain etc if I have a couple of contaminations in a row but the mental symptoms are there right away.....if you read this board for a bit you'll discover that there are a few distinct reactions to being glutened and not everyone experiences it the same way.

If you felt amazing going off gluten then continue doing it...as many have said here you don't require a doctor's permission to do so and what's most important is that you feel well!

good luck!

I agree totally with this. I am a diagnosed blood test negative celiac, 30% of us do test negative on blood work. The only difference for me is that my D waits until usually the 3rd day after consumption. I will have tummy rumbles and at times stomach pain but the D and the worst of the cramps are delayed. The neuro features, depression, anxiety and insomnia start to appear within hours though.

If you feel better on the diet as said you don't require a doctors permission.

[RollingAlong]

All of DH's blood tests were negative, including the biopsy. His symptoms are primarily related to mood with the occasional mad dash down the hall... He did get a positive test from Enterolab and his dietary response is excellent.

It helps to have support from your friends, and you probably will get it .....eventually. But in the meantime, your body is telling you what you need to know and there's plenty of support for you here.

You really need to stick to your guns on this, because gluten is slowly making you very ill and affecting your ability to think straight. It is sneaky stuff!

Healthier without Wheat is a good book to check out for gluten sensitivity.

[darkmoonsinger]

I just wanted to thank all of you for your opinions and reassurance... I didn't realise, really, that anxiety/depression could both be caused by gluten and happen that quickly. I also didn't realise that 30% of CDs have false negatives! Wow!

It turns out that I do, indeed, have celiac disease (not only did I have the anxiety/depression/crankiness, but the GI symptoms followed)... and, I have to be honest, I'm relieved. I'm not crazy (well, no moreso than usual ), it's fixable, and it's not anything that requires surgery... I can't really ask for more.

Thanks again!

~Jamie