I have been posting in the ms forum as well as the neurology forum. I will try to make this short and sweet..
In late Dec. I began having periperal neuropathy symptoms (just got that dx in April, it was thought that I had MS and then anxiety...turns out neither is right) i have tingly legs, feeling that they are going to give out, tight muscles, and things have moved into my hands as well. I also have vertigo.
Testing, testing, testing UGH!!! Everything from MRI's to spinal tap. The only 3 things that are abnormal that have been tested are low albumin, low igg and low vit D.
I have very few stomach symptoms, I feel a little "gruggly" in the morning where I can hear and feel the movement and I feel like I have a little bit if IBS. When I eat or drink certain things I RUN to the bathroom! ha ha!
I wish I could think of what else to mention....my main question is have all of you experienced the typical 'celiac" stomach symptoms early in the disease? I am 35, don't drink, smoke use drugs. I am(was) super hyper mom of 2....trying to think of what else I should mention...my dad has type 2 diabietes...
So...any thoughts???? I see my neuro again on the 3rd and plan to ask her about this but I just wonder if anyone first experienced neuropathy as an original symptom?
Angie, my husband has celiac and he had almost none of the 'typical' celiac symptoms. Many people don't. The symptoms can be 'all over the place' for an adult. There are a number of people who don't know they have celiac until neuropathy shows up, unfortunately.
I'd like to suggest you check with your doc, but also consider doing some fecal antibody testing and also cross-check via allele (genetic) testing. Most docs consider the duodenal biopsy the gold standard - and for many it may be - but it can be wrong. Check out the enterolab.com website. It's the only way we found out what my husband had and finally got him on gluten-free and feeling better. We also found out he cross-reacts to casein, the major protein in dairy.
Thank you so SO much! I have been so frustrated with all this going on and scared of the neuropathy! I do think there are some things that fit with me and celiac. Now I just need to ask my doc about them.
Do you mind me asking what your husbands symptoms were? His age? Does he feel normal on a gluten free diet?
Thanks so much! Sorry for so many questions! Did he have neuropathy?
My husband was in his early 50's when we figured out what was going on. His major symptoms were 'vague.' Used to feel 'full' all the time. Slight constipation although he had been that way for years and considered it 'normal' for him. Had low level skin condition, more 'flakiness' than any kind of rash. Low, low level one-side (hand) neuropathy that was attributed to something else.
I too am trying to figure out these and other probs/symptoms. My mri is normal but do show pos for L" merrittes. Not sure if that has anything to do with ms. my nero exam was normal also. I do have degenerative disk in my neck and arthris throughtout my spine which can cause all off these symps also.good Luck
i am oh so familiar with the testing, and more testing and all comes back "normal".
I have been having severe neuropathy symptoms for more than 15yrs and im only 31. I recently found out i have a severe case of celiac disease, your post really hit home with me because like you i have no bowel issues what-so-ever!!! My symptoms are severe leg and foot pain, with numbness, pins n needles, weakness in hands, arms and legs. I have days when i have trouble walking and climbing stairs, hand tremors, muscle twitches, dizziness, fatigue, hot flashes, easy bruising, bladder retention,palpitations, back pain, daily migrains the list goes on and on.
The only reason i found out i was celiac is because my 3yr old daughter was diagnosed, then my other girls and myself had to be tested. Turns out we are all celiac. Have you been tested for celiac disease yet? Neuropathy has not been confirmed as of yet, what is the testing dr's use to diagnose?
I have been experiencing the exact same thing as you. It's horrible isn't it :( I've had blood tests and the dr said they were clear for celiac.. i was just wondering whether anyone knows if you can still have celiac even if blood tests are clear, like whether there is a more accurate way to diagnose. I have every symptom of celiac and was shocked when the tests came back clear!
Do yourself a favor and double-check those blood results with a fecal antibody test for celiac or gluten issues. In my experience, blood tests can be inaccurate and may only show positive when the problem is far advanced. In the medical setting I'm in, we use the fecal antibody test to double-check when blood work has come back negative but we're almost sure the person has gluten issues. Check the Enterolab website.
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