Negative Bloodtest..now What?

[jodster]

Hello and thank you in advance for any advice and opinions. I wrote last month about my situation. After having wax and wane symptoms of MS for thelast 6 months but 2 negative MRI's and no DX , it became apparent to me that celiac can mimic MS. So, because I was DX'd with celiac as a baby but then recinded at 7, I thought I would give the blood test a try. I was really hoping for a positive Dx and put an end to all these symptoms but the TtG test came back negative. The reading was <20. So now I am feeling pretty down, thinking maybe it is mS. How accurate and reliable is the blood test??? I had the biopsy done 10 yrs ago, but that was after being gluten free for 5 montsh so it came back negative as well. I don;t know where to turn now as my Gp seems unwilling to go any furthur and just thinks it's in my head I'm sure. Anyhow, has anyone had a negative bloodtest and been celiac anywhase? What kind of symptoms did you have?? Mine are only a flu like feeling once a month, lots of gas, pins and needles and weakness in hands, feet legs at times, elecktrick shock sensations, brain fog, and left eye pain. Theses symptoms come all at once, last a week or two and go away completely only to return again whenever they decide. I'm sorry if I sound like a chronic complainer but this has been going on since September and since the neuro says no MS because teh MRI's are clear, and the doctor says no celiac because negative bloodtest, where from here. Thanks in advance. Jodster

[wolfie]

Hmmm......I thought once you were diagnosed, you were diagnosed. If you were diagnosed as a baby, why would your drs now question it? Are you following a gluten-free diet now? If not, maybe start there and see if that makes an improvement on how you feel over time. I have seen plenty of people post here who have tested negative, but have had a positive dietary response to a gluten-free diet.

I hope you can find some answers and start feeling better soon.

[Guest katzmeow21]

Hello and thank you in advance for any advice and opinions. I wrote last month about my situation. After having wax and wane symptoms of MS for thelast 6 months but 2 negative MRI's and no DX , it became apparent to me that celiac can mimic MS. So, because I was DX'd with celiac as a baby but then recinded at 7, I thought I would give the blood test a try. I was really hoping for a positive Dx and put an end to all these symptoms but the TtG test came back negative. The reading was <20. So now I am feeling pretty down, thinking maybe it is mS. How accurate and reliable is the blood test??? I had the biopsy done 10 yrs ago, but that was after being gluten free for 5 montsh so it came back negative as well. I don;t know where to turn now as my Gp seems unwilling to go any furthur and just thinks it's in my head I'm sure. Anyhow, has anyone had a negative bloodtest and been celiac anywhase? What kind of symptoms did you have?? Mine are only a flu like feeling once a month, lots of gas, pins and needles and weakness in hands, feet legs at times, elecktrick shock sensations, brain fog, and left eye pain. Theses symptoms come all at once, last a week or two and go away completely only to return again whenever they decide. I'm sorry if I sound like a chronic complainer but this has been going on since September and since the neuro says no MS because teh MRI's are clear, and the doctor says no celiac because negative bloodtest, where from here. Thanks in advance. Jodster

My suggestion is get on a gluten free diet. Genetic testing can prove or disprove whether you have the gene. If you were told you had it when you were a kid then.... go with that.

I just want to say that my dad (who lived to be 83) was diagnosed with MS when he was around 50. I believe he was an undiagnosed celiac who then went on to get MS or maybe just severity of malabsorption and malnutrition from celiac that causes the mimicry of symptoms.

I was diagnosed a year ago and had a lot of the symptoms you describe and thought I had MS as well.

The gluten free diet has brought so much relief with all the symptoms that I am excited.

Blood testing is not a sure thing for a lot of people.

Get the book, Celiac disease, a hidden epidemic, by Peter H.R. Green, MD. He speaks in there of the blood testing and everything else you will ever want to know about celiac.

Hope this helps

My suggestion is get on a gluten free diet. Genetic testing can prove or disprove whether you have the gene. If you were told you had it when you were a kid then.... go with that.

I just want to say that my dad (who lived to be 83) was diagnosed with MS when he was around 50. I believe he was an undiagnosed celiac who then went on to get MS or maybe just severity of malabsorption and malnutrition from celiac that causes the mimicry of symptoms.

I was diagnosed a year ago and had a lot of the symptoms you describe and thought I had MS as well.

The gluten free diet has brought so much relief with all the symptoms that I am excited.

Blood testing is not a sure thing for a lot of people.

Get the book, Celiac disease, a hidden epidemic, by Peter H.R. Green, MD. He speaks in there of the blood testing and everything else you will ever want to know about celiac.

Hope this helps

Hi again. Just to add that in the book I suggested in the last post the MD states that ttg is NOT specific for celiac disease. So....

[jodster]

Thank you for your responses. I am not on the gluten free diet as of now. I was Dx'd at 1 just based on symptoms from my ped who has celiac himself. Then at 7, another doctor said to go off the diet, he didnt think I had it. At 21 I became quite ill(gastro related) and was hospitalized for 2 weks. My mother mentioned teh past celiac DX to the attending gastro and he made a refferal for a biopsy to be done but told me to get on teh gluten free diet iun the meantime. It took 5 montsh to get the biopsy which of course came back negative so I never went back to the diet assuming I didnt have it. I never had any other problems until I became pregnant 4 years ago. then i had bleeding isues after delivering and then went on to have them again 7 months in to last pregnancy. A year after that(this past September ) is when all teh symptoms started. No so much G.I ones as neuro ones but like I said, the neuro states because I ahve no lesions I have no mS and now the Gp states that because the bloodtest for celiac was negative, I don't have celiac. So I wonder if it's celiac thats just not showing up or MS that is just not showing up(testwise I mean). I mean, maybe I will try the diet again for a few months and see if my symptoms go away. Then maybe I will ahve a better idea. Thanks so much for your time. Jodster