Am I Nuts?

GreenEyedMonster · Joined: 07 Sep 2005 Posts: 9 Location: Bossier City, LA

About 10 years ago, in my early 20's, I went through a period of about 8 months where I had severe stomach cramps, diarreha, anemia, fatigue, seizures, etc. I went from almost 230 pounds, to 155. My family doctor in my small hometown didn't do any testing other than for anemia, (which I tested positive for) and determined I had a gluten intolerance by removing certain foods from my diet over a period of time. When eliminating gluten from my diet, I quit hurting and the symptoms pretty much went away.

Over the years, partly due to my line of work, (I'm a restaurant manager) I found myself eating whatever was quick and available since I am at work more than I am at home. I learned to deal with the cramping and constant aching in my stomach and the diarreha was just a fact of life.

Recently, as my workload increased, and my stress increased, the symptoms returned, minus the weightloss. (Drat.) Approaching total burnout/exaustion and tired of hurting, I made an appointment with a gastroenterolgist two weeks ago and explained my symptoms and the way I was feeling. He immediately ordered bloodwork and scheduled a lower GI and biopsy for the 13th of September. He also gave me a much needed break from work till after the biopsy is completed.

A few days after seeing him, I ate pasta for dinner, and 1/4 of the way through, I got really sick. Cramping, nausea, and vomiting for 15 hours straight. I thought it could have been food poisoning (I was THAT sick), but my family wasn't affected at all and we ate the same thing. Needless to say, I'm haven't touched a crumb of anything containing gluten since, I'm too scared.

My bloodwork came back negative for everything, including anemia. I'm sure the biopsy will tell more next week, but I'm concerned that the biopsy also coming back as negative for CD even though my body tells me that I can't eat it. Is this a possibility?

I'm still exausted, irratable, and my stomach still faintly cramps, although nothing like a week ago when I was still eating whatever I wanted to. I can't bear the thought of working 12-16 hour days right now let alone moving from one part of the house to the other. Am I imagining this? Would the intolerance to gluten get worse, especially during extremely stressful periods? (I've been working in excess of 90 hours a week for the last two months.)

Sorry for the long post, I'm kind of confused and suffering from information overload.

aklap · Joined: 02 Oct 2004 Posts: 8602 Location: WI, USA

Hi Green,

I'm at work and have time for only a short reply.

No you are not nuts.

From the sounds of it, you very well could have gluten intolerance. Blood work is not always perfect. Even biospies can tell a false story. You could have negative biopsy due to misreading of the results, incorrectly processing of the biopsys, not enough samples taken. Damage can be patchy - so if it's not taken in the spot that has damage - the doc will say "No Celiac".

What blood tests were done, do you know?

Yes, stress can magnify any physical issues!
_________________
Al

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

GreenEyedMonster · Joined: 07 Sep 2005 Posts: 9 Location: Bossier City, LA

I'm not sure what bloodwork was ordered. He did say that he was testing for anemia and specifically celiac sprue, so I assume that they included the regular screenings. I won't find out specifics till the 13th. I'll assume I'll receive results on paper if I ask for them.

Is there really a relation to CD and people from Italian decent? I remember reading that somewhere.

The Edifying Conscience · Joined: 29 Aug 2005 Posts: 2437

"A few days after seeing him, I ate pasta for dinner, and 1/4 of the way through, I got really sick. Cramping, nausea, and vomiting for 15 hours straight. I thought it could have been food poisoning (I was THAT sick), but my family wasn't affected at all and we ate the same thing. Needless to say, I'm haven't touched a crumb of anything containing gluten since, I'm too scared. "

Biopsy and blood results can be false negative if you don't consume 3 -4 servings of gluten per day. The body starts to recover within a short period of time leading to inaccurate test results. It's not clear to me how long you didn't consume gluten, but it's a possibility. Start eating gluten now before your biopsy on the 15th.

What exact blood tests did your doctor run and what lab was used? Lab efficiency can also be a player in negative diagnosis.

TEC

aklap · Joined: 02 Oct 2004 Posts: 8602 Location: WI, USA

GreenEyedMonster · Joined: 07 Sep 2005 Posts: 9 Location: Bossier City, LA

The doctors office called this afternoon with my blood results, which came back normal. I asked her which tests they did. She told me they did a complete metabolic workup... CBC, iron and thyroid. Are these the tests used to determine CD? The office worker couldn't answer that question.

aklap · Joined: 02 Oct 2004 Posts: 8602 Location: WI, USA

Guest · Posted: Wed Sep 28, 2005 4:25 am Post subject:

Well, here's an update so far. The day of the biopsy, the meds I was taking to prep made me sick, so I called into the doctors office to ask is this was normal or not. The nurse yelled at me (I'm not joking, I held the phone away from my ear) and told me I was just trying to use the excuse of being sick to get out of work. I was mortified. Crying and not knowing what else to do, I cancelled my appointment and called another doctor that was willing to listen to me. He did the biopsy last Thursday, and he also spaced out the prep meds (he actually started them a full day and a half before, so if I felt sick, I could slow down taking them and give my stomach a rest in between each dose.) I still got sick, but it wasn't nearly as bad as the first time and it was about 4 hours after I took the very last dose. Nobody yelled at me either, which is always a good thing.

The doctor called yesterday with the results of the biopsy, and it's a positive diagnosis of Celiac. I don't know whether to be happy or sad. I am glad however that what I feel isn't just my imagination.

Since this was a different doctor, he wanted to run the complete battery of blood work, including all the gluten panels the other doctor didn't run, just to be 100%. I had those done this afternoon, (5 vials) with a follow up appointment today to discuss the results of the biopsy. The lab told me the bloodwork won't be completely in for 4-5 days. I'm so weak it's not funny, and I have got to get back to work. I'm hoping they can help with the weakness/tired thing because I'm really tired of laying around the house like a vegetable. I thought the biopsy was the standard diagnosis, not the bloodwork.

I also (reluctantly) saw a neurolgist last week about what I feel are seizures I've been randomly experiencing over the last few years, ( I was really afraid to even mention them to the gastrologist that refered me to this doctor to begin with, because I can't really explain what happens and I figured if I couldn't explain it, how could they fix it.) but when I tried to explained to the neurolgist what I've been experiencing, he instantly dismissed it as night terrors and scheduled a sleep study for this coming Thursday night. I find that odd. I just don't think what I experience are night terrors.

I'll try to explain but keep in mind that nobody has witnessed these, I just know what I feel like and what I remember happening. They always happen when I lay down to sleep. They happen randomly, sometimes days between or even months between and I don't always remember they happen until something triggers the memory. Before, I feel really odd and displaced and so tired I can't keep my eyes opened, which is why I usually lay down to begin with. I hear a buzzing in my ears that sounds like ... well, I can't really explain what it sounds like, but what I hear, I also feel. It's like hearing and feeling a buzz of dull electricity and I smell maple syrup. I know everything that is going on around me, but I can't move, I can't talk and I feel myself shake. To what degree, I don't know because I haven't seen it, I just know what I feel. When it's over, I guess I sleep and when I wake up, it takes me awhile to figure out where I am, and I usually feel really, really groggy and I don't remember anything about what happened until a day or two later, if at all. I've probably had this happen more times than I can actually remember.

Can anyone share what you've experienced with seizures?

Guest · Posted: Wed Sep 28, 2005 4:34 am Post subject:

I'm sorry I forgot to answer about Katrina.

We didn't see anything from Katrina at all, although we did see massive amounts of rain and wind from Rita. No major damage was done though and our power only went out twice Satuday, both times under a few minutes each. We've been really lucky.

We've got about 3000 folks here from New Orleans in shelters till they can get back home. It's so sad to see most of these folks with no home to go back to.

aklap · Joined: 02 Oct 2004 Posts: 8602 Location: WI, USA

Hi Green,

Sorry to hear that you a terrible time getting your scope done. That just should've never happened.

I can understand your mixed feelings on this. Once this all settles down...I think you'll be happy that you know whats going on and know how to handle it.

I'm not surprised about the neuro dismissing you about the "seizures". It's very possible thats what they are. DO NOT LET THIS SLIDE. If this neuro doesn't take you seriously find another one!!

I see that you were looking around Braintalk a while back. There are several people over there that have been dealing with seizures (a few with complete resolve on a GF diet). I would post your description over at Braintalk (just 'em Al sent ya Smile

). They might be able to help you sort things out. They are a great bunch!! I too have experience strange things in my sleep.

The buzzing that you describe...I have had that. Yes, it feels like electricity running thru you!!! It was in my arms and hands. Buzzing can also be a sign of B12 deficency. What you hear...is it a fluttering sound? Are you taking any B12 supplements? Did any of the docs do a B12 check on you? I would try to get that done. Since you have positive biopsy - it is something that should be done. It's an absorption issue. I have a couple of posts about B12 Deficency around here (it links to Braintalk). Since I have been GF (and I take B12 supps), I have not had the buzzing or the "bee stings" I felt all over my body.

I have heard others describe the "not being able to move" too.

Green, I wish you well in your GF Journey. I hope you get to the bottom of the other issues going on!

Glad to hear you weren't too affect by Katrina!
_________________
Al

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

Staying anonymous · Guest

Two people (my child and a sister; possibly some (untested) cousins, too) in my family had horrible shuddering - probably what you are calling seizures. Peripheral neuropathy, tingling, odd hearing and visual sensations, etc., too. Neurologist said it was all in their heads. Maddening. After celiac diagnosis (testing done because of NUMEROUS other symptoms) and gf diet, all of the neurological problems went away. First several internists and even a gastroenterologist dismissed the connection between the neurological symptoms and cd, and also dismissed any connection between their disappearance and a gf diet. Needless to say, our family strongly believes in celiac related neurological problems.
After you recover your health and make a full adjustment to the gf diet - actually not just a diet, but a lifestyle - you will be glad to have a disease that is so treatable!!! The Gold Medal of Autoimmune Diseases (read that somewhere). Your success may depend on your entire household going gf.
Good luck to you for improved health!