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Shashi

New With Lots Of Symptoms And Questions

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Hi, my name is Lisa, and my primary care physician recently tested me for Celiac disease based on symptoms I've been having for several months (or years, depending on if my other symptoms are related.)

As a bit of background, for about the past four or five months, I've been losing weight without even trying to, in spite of eating a lot of fattening foods throughout the holidays. In all, I've lost about 18 lbs. with 15 of them being since I saw my doctor in October. A month ago, I started having nausea, vomiting, and diarrhea, but no fever. It was intermittent - one day I would be fine, then I'd have diarrhea the whole next day. Then for the next two days I'd be okay, then I'd have nausea/vomiting for half of a day or so. This went on for about two and a half weeks, then I got better, though I'd still have the diarrhea every five or six days. This past Friday, I got sick with the nausea, vomiting, and diarrhea again, though this time I had a fever, which makes me think it might have been a stomach virus (which is going around in this area.)I lost about three lbs. from this last episode. (I'm a fluffy gal, and could stay to lose a lot more, but this has got me worried! How can you eat half a pan of fudge in two days and lose weight?)I often also have stomach pain which feels like I'm very hungry, even though I've just eaten.

I saw my PCP at the end of December, and she ran some tests. My potassium was low, which was no surprise, given the vomiting and diarrhea. There was also something on the Celiac panel that came back borderline deficient (I don't know what that particular element was.) So, she's sending me to my GI doctor for a consult.

In addition to all of these symptoms, for the past four years, I've had neurological symptoms that were suspected to be MS. I have nerve pain in my head, hands, feet, legs, etc. I also have had muscle spasms, pain in my joints and bones, extreme fatigue, muscle weakness, tremors, severe gastric reflux, frequent constipation, bloating, gas, gurgling tummy, etc. My MRIs have only recently shown four non-specific T-2 hyperintense foci(lesions), but they're not in the right areas for MS lesions. I've been tested for everything else under the sun over the years. I do have messed up reflexes in my legs, and I'm also off balance a lot.

Do these symptoms sound like Celiac disease? What on that Celiac panel could be borderline deficient and make my doctor suspect Celiac? Should I start on a gluten-free diet before I'm diagnosed, in the hopes that I might get some relief, and how long might that take? How is Celiac disease diagnosed?

(Sorry this is so long!)

Thanks and hugs,

Lisa

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Hi, my name is Lisa, and my primary care physician recently tested me for Celiac disease based on symptoms I've been having for several months (or years, depending on if my other symptoms are related.)

As a bit of background, for about the past four or five months, I've been losing weight without even trying to, in spite of eating a lot of fattening foods throughout the holidays. In all, I've lost about 18 lbs. with 15 of them being since I saw my doctor in October. A month ago, I started having nausea, vomiting, and diarrhea, but no fever. It was intermittent - one day I would be fine, then I'd have diarrhea the whole next day. Then for the next two days I'd be okay, then I'd have nausea/vomiting for half of a day or so. This went on for about two and a half weeks, then I got better, though I'd still have the diarrhea every five or six days. This past Friday, I got sick with the nausea, vomiting, and diarrhea again, though this time I had a fever, which makes me think it might have been a stomach virus (which is going around in this area.)I lost about three lbs. from this last episode. (I'm a fluffy gal, and could stay to lose a lot more, but this has got me worried! How can you eat half a pan of fudge in two days and lose weight?)I often also have stomach pain which feels like I'm very hungry, even though I've just eaten.

I saw my PCP at the end of December, and she ran some tests. My potassium was low, which was no surprise, given the vomiting and diarrhea. There was also something on the Celiac panel that came back borderline deficient (I don't know what that particular element was.) So, she's sending me to my GI doctor for a consult.

In addition to all of these symptoms, for the past four years, I've had neurological symptoms that were suspected to be MS. I have nerve pain in my head, hands, feet, legs, etc. I also have had muscle spasms, pain in my joints and bones, extreme fatigue, muscle weakness, tremors, severe gastric reflux, frequent constipation, bloating, gas, gurgling tummy, etc. My MRIs have only recently shown four non-specific T-2 hyperintense foci(lesions), but they're not in the right areas for MS lesions. I've been tested for everything else under the sun over the years. I do have messed up reflexes in my legs, and I'm also off balance a lot.

Do these symptoms sound like Celiac disease? What on that Celiac panel could be borderline deficient and make my doctor suspect Celiac? Should I start on a gluten-free diet before I'm diagnosed, in the hopes that I might get some relief, and how long might that take? How is Celiac disease diagnosed?

(Sorry this is so long!)

Thanks and hugs,

Lisa

You can't stop eating guten 'till after the testing is done....that said, if you have a great deal of personal flexibility (time) try getting on the doctor's cancelation list, so that you can be seen as soon as possible!

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Welcome to the board, Lisa.

Thank goodness your doctors recognized your symptoms - they sound like classic celiac symptoms. The celiac panel consists of five or six different blood tests, so it's hard to say which one came back borderline, but it was obviously of significance of she is referring you to a GI. No, you should keep eating gluten until all your testing is finished so as not to affect the results, because in the absence of gluten some healing can take place right away.

Most people are unaware that gluten can cause neurological symptoms, including UBO's (unidentified bright objects) on brain MRI, and gluten ataxia (balance problems.)

Celilac disease is diagnosed by the blood panel, which it seems you have already had, and by endoscopy of the small intestine with biopsies (they look at your small intestine by placing a tube down your throat under sedation, and take several samples for examination under microscope.) The endoscopy is considered to be the 'gold standard' of celiac diagnosis because the current definition of celiac disease is damage to the small intestine. However, be aware that many people with neurological symptoms may not have small intestine damage, although you have been having some pretty good GI symptoms too. Based on your symptoms I would suggest that as soon as your testing is over you go gluten free regardless of the result, because there is at least a 20% false negative rte in the testing and our symptoms sound so classic.

Hugs to you, and I hope you can get your biopsy done soon and start to heal.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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