Looking To Talk To My Doctor Next Week

[CTMechE]

I just found this forum tonight, after spending the past 2 weeks reading about Celiac disease. I'll try to sum up my story briefly, but I'm wondering if there's a good way to sum up the seemingly large amount of evidence for proper testing without either annoying my doctor by self-diagnosing things, or coming off looking like a hypochondriac.

I realize many of the symptoms are vague and general, and that they vary widely from person to person, but there are just a few too many things to be coincidental.

So here's my story: I'm a 26 yr old caucasian male, in pretty good health besides my problems I'm describing. The basic gist of things is that I haven't felt particularly "good" in about 5 years. Some days I feel decent but not great, other days I'm so fatigued and run down that I just have no ambition or concentration. For several years before that, I've had general digestive irritability, and been a bit gaseous, but as a college guy, I figured these things were kinda par for the course given the junk food.

In 2001, after weeks of particularly bad stomach/intestinal problems, my doctor scheduled me for a colonoscopy, suspecting Crohn's disease. They found no evidence of it. The day after that, I got sick and threw up my pasta dinner. I hadn't thrown up in ~12 years prior, and have never thrown up since. The hospital didn't find anything noteworthy, so I went home, and gradually recovered from my fatigued state after a few days.

Since then, my "irritable bowel syndrome" has gradually gotten worse. Not to be gross, but mucous in the bowl is the norm. I've gone to the doctor whenever I had what seemed like a week or 2 of particularly bad digestive problems... food not being completely digested, horrible cramping, and even worse fatigue. Nothing was done, but I don't know if they tested for Celiac symptoms.

In the past 2 months, I started getting migraine auras. I have no family history of migraines, but I've had 3 in this time period so far. I've felt even worse than normal in what seems to be another bout of problems. I'm having a CAT Scan on my head tomorrow, just to rule out a brain tumor or something, but my doc doesn't suspect that's the case. (I certainly would hope not...)

I've had acid reflux since 2001 as well, which was described as probably causing my digestive problems. I take daily medication for it, but it doesn't seem to solve the problem, merely tame it.

Last year, I started getting bumps that look just like mosquito bites, but they're obviously not. They appear all over... I dunno if they're hives, but they just come and go, day after day, wherever they want.

And just this week, after reading about other symptoms, I realized that the itchy bumps on my elbows that last for months probably isn't just a dry skin rash from leaning on my elbows a lot. Right now, it's just my left elbow, and not too terrible, but I recall the same thing on my right elbow that was quite annoying for about 2 months straight before it gradually faded away.

But here's the kicker... when I was about 8 or 9 years old, my parents took me to an allergy specialist, because I was sneezing a lot. I had the back scratch test, which indicated I was allergic to dust, mold, animal dander... and wheat. I don't know what they specifically tested for, though, I was just told I was allergic to these 4 things. I'll be honest, it seems quite stupid in hindsight to admit this revelation after years of not even considering it as a problem But given that I wasn't really old enough to talk to my doctor about these things, my Mom did. (This was in 1988) And well... I was told I was allergic to wheat, but I've never avoided it, and never stopped eating wheat products. I never really gave it any thought, because dust/mold/animal dander caused obvious sneezing and watery eyes, but wheat didn't seem to do anything at all. So I thought.

Honestly, while I'm not thrilled at possibly having to live a life without pizza, beer, and pasta or bread, if this will make me feel better, like I used to when I was a teenager, I'm looking forward to it.

I'm going to keep my usual diet going for now, in case they decide to run tests. Is this a good/bad idea? I figure I can ride out another week or 2 if we have tests.

I'm already going to my doc next week to discuss my CAT scan results (hopefully lack thereof) during which case I'll be bringing up Celiac disease.

So... if you've been patient enough to read this far, any comments? My doc is expecting to talk about migraines, so I don't want to just completely blindside him...

Anyways, thanks for those who read all this, and thanks in advance to anyone who replies. This seems like a great forum (far more friendly than my car forum!!) Emails are welcome.

Thanks again!

[BRUMI1968]

I think you should definitely get tested. I had all sorts of seemingly unrelated symptoms: canker sores, itchy skin (w/o rash), fatigue, etc. and was told Irritable Bowel...for years before finally asking for the test myself. Surely, a doc who would order an expensive CAT scan will concede to a simple blood test. Good luck to you. There is gluten-free beer, by the way.

-sherri

[Ursa Major]

Hi, and welcome to this board. Yes, I agree with Sherri, you sound an awful lot like you may have celiac disease, and should be tested. And you're right in not going off gluten before testing. If you would go gluten-free now, your tests could very well come out falso negative, and you still wouldn't know whats going on.

Even though, of course, if you'd just go gluten-free, you would likely feel better and have your answer, too. But since you see your doctor next week anyway, it is wise of you to wait. One more week is a short time after you've been unwell for five years.

I hope you figure it out!

[mouse]

You need to ask your doctor to humor you and run the FULL Celiac blood panel, which consists of 4 or 5 tests. My doctor was from the old school and only ran run one and luckily for me it came up positive. He said later that I was about 2 weeks away from no recovery at all. By the time he thought of Celiac I was completely house bound, bed ridden and dehydrated. My understanding is that you have to be ingesting enough gluten daily to the equivelent of 3 slices of bread daily and for 3 months prior to testing. There are over 200 symptoms and so you can have a combination of them or actually no symptoms at all. Good luck in your testing and really the diet is far easier to do then most people think. It is just the learning that takes time.

Welcome to the board and I hope you get an answer that will make you well.

Oh, I forgot to mention, that you can see a dermatologist for a biopsy of your elbow. They take the biopsy from next to an eruption and not on the blister. They would be testing for DH. If the biopsy comes up positive for DH then you have Celiac. Not all Celiacs get DH, but all DH people automatically have Celiac - if that makes sense.

[tarnalberry]

1. the wheat allergy test doesn't relate to a celiac test at all. wheat allergy is an IgE mediated immune response that involves histamine release; celiac disease is an IgG auto-immune response that involves production of tissue destroying antibodies. you can have both, or just one.

2. yep, you should get tested - making sure they run the full panel. and make sure to keep eating plenty of gluten before the test.

3. going gluten free doesn't mean giving up pizza, bread, and pasta, though it does mean finding those items made from different flours and usually cooking it yourself.

4. the sores/spots might be dermatitis herpetformis. if so, you can have those biopsied directly by a dermatologist. if you've got DH, you've got celiac disease. (DH is a uncommon (less than 50% of celiacs) dermologic manifestation of celiac disease.)

finally, if you get tested, and find out that you are not celiac, please go off wheat anyway. allergies can cause those problems as well, and your parents should never have let you continue eating wheat. :-(

[brendygirl]

Thanks for the post. I have a dr. appt Monday (switched to a new dr.) and am afraid to imply I am self-diagnosing...

My story. I am estranged from my father, and when I was carrying around Pepto in my purse in Las Vegas on a girls only trip, my mom asked me what on earth was wrong with me and I said, I don't know but I remember from when I was a little girl that my dad always had Pepto in his truck and guzzled it- so I knew I had whatever he had.

Well, low and behold, a year after that trip,my brother told me my dad was diagnosed with celiac! He had bad back pain, too- doctors wanted him to have back surgery for 20 years!- and once he went gluten-free, no more back pain. My brother said he played basketball with them for hours for the first time! I had severe back pain for 4 years and my doctor told me I didn't sit up straight. haha

Well, I went to my doc and told him about my dad's diagnosis and he REFUSED to test me. He made me go on a gluten free diet to see if I felt better. WELL, I did and I did feel better. SO then 6 weeks later the doctor said, Good. Now go on gluten for 7 days and we'll test you. Well, the test came back negative, he said. So, I'm like, that's good, but now what? I can't go back to eating gluten, so ???

Now that I've educated myself here on this message board, I realize that you need to eat gluten for MONTHS and certain amounts of it for an accurate result, but Just 7 days of gluten HURT!!!

SO, that was Nov. '05. I was feeling really nutso. Like, am I psychosomatic? I'm usually very stoic (Norwegians are like that...) and I was kinda embarrassed. Anyway, then last month I ate pickles (dumb mistake, I know) and I got those bumps on my elbows and knees and my chest , and this website had pictures so I KNOW I HAVE IT!!! So, I changed doctors, and I have an appt. Monday, but the bumps are fading now...???

(I got the bumps regularly for years, and 4 years ago I asked my old dr. when I had really bad itchiness for SIX MONTHS and she said it was probably my laundry detergent. I went crazy changing detergents, buying new undergarments, etc.!! WHy wouldn't anyone test me?) My more recent doctor wouldn't even give me an allergy test. He said, why? If you're allergic to grass, what are you gonna do?, never go near grass? It's really frustrating.