Tested Negative With Neurological And Digestive Symptoms

[tinkity]

Hello all! I just recently was tested for celiac, and picked up my results from the lab yesterday. As far as I can tell, the results read negative. I have pretty severe digestive symptoms, as well as strange neurological symptoms. I'm deficient in some things, I can't gain weight, I have a low lymphocyte count, and I in general feel pretty darn crappy. I have waves of rather severe neurological type symptoms. I have been tested for everything from h. pylori to MS and Lupus and Lyme with all negative results. I am considering a gluten free diet reguardless of the celiac results and just wanted to introduce myself. So, hey there!

[ravenwoodglass]

Welcome to the board. You are doing the right thing to give the diet a shot even with the negative blood work. False negatives are all too common and cost me a lot because I just didn't know to try the diet. If you are going to have an endoscopy done wait until the day that is done before you try the diet. Then after the procedure go strictly gluten free. You have nothing to lose. Ask any questions you need to and read as much as you can. The diet can be hard at first but it is so worth the trouble if it helps.

[tinkity]

Welcome to the board. You are doing the right thing to give the diet a shot even with the negative blood work. False negatives are all too common and cost me a lot because I just didn't know to try the diet. If you are going to have an endoscopy done wait until the day that is done before you try the diet. Then after the procedure go strictly gluten free. You have nothing to lose. Ask any questions you need to and read as much as you can. The diet can be hard at first but it is so worth the trouble if it helps.

Thanks for the response. I am just so worn out and my body just feels so done for. I see in your siggy that you had neuro symptoms and tested negative yourself. How bad were your neuro symptoms? How long did it take to start feeling better? I really don't understand how in the heck someone can have celiac and not show antibodies. It just doesn't make sense. It's very frustrating. I don't think I will end up getting an endo. I live out in the boonies and would have to wait for an appt., try to get insurance to cover and have to travel for it. I suppose doing the diet is the only real way to know for sure.

My neuro symptoms came on so incredibly strong that they orginally thought I had guillain barre. I am vit. d deficient, all of my electrolytes are in the toilet (literally lol) and I'm feeling desperate to feel normal. Could it really be that I test negative, but that it is celiac all along? This has been going on for over a year now. I am feeling pretty helpless.

[ravenwoodglass]

Thanks for the response. I am just so worn out and my body just feels so done for. I see in your siggy that you had neuro symptoms and tested negative yourself. How bad were your neuro symptoms? How long did it take to start feeling better? I really don't understand how in the heck someone can have celiac and not show antibodies. It just doesn't make sense. It's very frustrating. I don't think I will end up getting an endo. I live out in the boonies and would have to wait for an appt., try to get insurance to cover and have to travel for it. I suppose doing the diet is the only real way to know for sure.

My neuro symptoms came on so incredibly strong that they orginally thought I had guillain barre. I am vit. d deficient, all of my electrolytes are in the toilet (literally lol) and I'm feeling desperate to feel normal. Could it really be that I test negative, but that it is celiac all along? This has been going on for over a year now. I am feeling pretty helpless.

My neuro symptoms were severe. By the time I was diagnosed I was unable to walk unaided. I couldn't read anylonger because I couldn't remember one sentence by the time I read the second. I couldn't name a fork if you held one up and had a great deal of trouble with my speech. I had daily migraines, no reflexes and one leg was flatline on an electromylogram. I also had episodes of depression that were severe and toward the end I became totally incontinent due to the nerve damage. A few years before diagnosis I had an MRI of my brain because they thought I had MS. They found the brain lesions specific to celiac but the neuro didn't know what they were. They are similar to the lesions in MS but in a different place. I haven't had another MRI so I don't know if they are still there.

My migraines were gone within a week, never to return. Within 6 months the speech problems were gone and I was able to walk unaided and the incontinence had started to resolve. In two years my reflexes were back and my memory issues had for the most part resolved.

I am now for the most part healed. I was even able to return and finish up my last semester in college and will finally graduate this month with an A average. I had to drop out around 96 because I was to ill to finish.

It can take some time to heal but if I could heal anyone can. I found sublingual B12 helped a great deal but was able to stop taking it about 2 years ago.

I don't know why my antibodies never showed up in my blood, for some they just don't. I also had severe daily and nightly D and arthritis so severe they thought I had RA and medicated me for it but that also went into remission within a couple months gluten-free.

[sa1937]

My neuro symptoms were severe. By the time I was diagnosed I was unable to walk unaided. I couldn't read anylonger because I couldn't remember one sentence by the time I read the second. I couldn't name a fork if you held one up and had a great deal of trouble with my speech. I had daily migraines, no reflexes and one leg was flatline on an electromylogram. I also had episodes of depression that were severe and toward the end I became totally incontinent due to the nerve damage. A few years before diagnosis I had an MRI of my brain because they thought I had MS. They found the brain lesions specific to celiac but the neuro didn't know what they were. They are similar to the lesions in MS but in a different place. I haven't had another MRI so I don't know if they are still there.

My migraines were gone within a week, never to return. Within 6 months the speech problems were gone and I was able to walk unaided and the incontinence had started to resolve. In two years my reflexes were back and my memory issues had for the most part resolved.

I am now for the most part healed. I was even able to return and finish up my last semester in college and will finally graduate this month with an A average. I had to drop out around 96 because I was to ill to finish.

It can take some time to heal but if I could heal anyone can. I found sublingual B12 helped a great deal but was able to stop taking it about 2 years ago.

I don't know why my antibodies never showed up in my blood, for some they just don't. I also had severe daily and nightly D and arthritis so severe they thought I had RA and medicated me for it but that also went into remission within a couple months gluten-free.

You are a total inspiration to all of us!!!

So now that you're ready to graduate, what do you want to be when you grow up?

[laura4669]

My blood tests showed up negative, and my endoscopy showed up negative too. It was through a stool analysis that I found I was highly intolerance to gluten. My inflammation was off the charts. I agree that trying a gluten-free diet is a great idea. I hope it works!

[ravenwoodglass]

You are a total inspiration to all of us!!!

So now that you're ready to graduate, what do you want to be when you grow up?

Thank you. The healing process for the brain is so very slow hopefully my progress will give hope to others.

I am not sure what I am going to do yet. In the 90's I had a full scholarship to a great local college and wanted to teach in special ed. I don't think many places would be open to a student teacher in their midfifties so my plans have changed a bit. Being so ill for so long has given me the gift of patience. I did substitute teaching for a while and worked as a one on one with a 10th grade student who had suffered a traumatic brain injury. It was hard work but I am so proud of her and she has come so far. She was only functioning at a 1st grade level when we started but due to her hard work she was able to join regular classes the next year and went on to complete high school. I am hoping to find a position with an local organization that works with children with developmental delays and cerebral palsy. While working in that type of field is not real well paying money wise the reward in helping others overcome problems that I have suffered is rewarding in more important ways.

[tinkity]

My neuro symptoms were severe. By the time I was diagnosed I was unable to walk unaided. I couldn't read anylonger because I couldn't remember one sentence by the time I read the second. I couldn't name a fork if you held one up and had a great deal of trouble with my speech. I had daily migraines, no reflexes and one leg was flatline on an electromylogram. I also had episodes of depression that were severe and toward the end I became totally incontinent due to the nerve damage. A few years before diagnosis I had an MRI of my brain because they thought I had MS. They found the brain lesions specific to celiac but the neuro didn't know what they were. They are similar to the lesions in MS but in a different place. I haven't had another MRI so I don't know if they are still there.

My migraines were gone within a week, never to return. Within 6 months the speech problems were gone and I was able to walk unaided and the incontinence had started to resolve. In two years my reflexes were back and my memory issues had for the most part resolved.

I am now for the most part healed. I was even able to return and finish up my last semester in college and will finally graduate this month with an A average. I had to drop out around 96 because I was to ill to finish.

It can take some time to heal but if I could heal anyone can. I found sublingual B12 helped a great deal but was able to stop taking it about 2 years ago.

I don't know why my antibodies never showed up in my blood, for some they just don't. I also had severe daily and nightly D and arthritis so severe they thought I had RA and medicated me for it but that also went into remission within a couple months gluten-free.

I started to tear up reading this... I don't know for sure that what I have is related to celiac, but after reading this I have to try. I have always had tummy trouble- my whole life. I had my gallbladder removed 2 years ago, but the problems continue. Last year I woke up one morning with excruciating pain and weakness in my calves. Within 2 days I didn't have the strength to write my own name or walk. I was deficient in multiple things, I had no reflexes, horrible dizziness, intention tremor, muscle spasms and incredible pain. The story and list is long, but I was shipped out with suspected guillain barre... then possible Lyme, Lupus, MS- the list goes on and on. I am very tired of being sick. I seem to have relapses and then partial remissions and no one can figure out what the heck is wrong with me. All this time my digestive problems just seem to get worse as well, which tells me it very well could be related. I have times when my digestive system is, literally, top to bottom a disaster and I'm in the bathroom over and over all day long. I have to admitt, I was really hoping the test for this would come out positive, because then I would know what was wrong, and I could simply (at this point even a severe diet change seems simple!) stop eating gluten. I was devastated that it was negative, as silly as that sounds.

You really are an inpiration. You have come so far. I can't accurately express my feelings here. I hope someday I am able to get better and move toward my goals as well. You're awesome.