I am making this post on behalf of my girlfriend. She is currently being run through a variety of tests to determine if she has MS. Bloodwork, MRI, spinal tap. She has had a hard time not eating gluten products, and has it in spurts. She has been diagnosed with celiac disease since she was 17, suspected at 13, and is now 21. So she has continued eating gluten products since her diagnosis.
Her symptoms include:
Constant numbness in her limbs, with attacks of severe numbness and loss of control.
Difficulty Walking/legs giving out.
Difficulty with balance.
Active brain lesions in her white matter and spine.
Some vitamin deficiences, but we do not know the specifics.
She has had a spinal tap performed, but the results have not come back yet.
I have done some research and I have found that celiac disease can cause white matter lesions and spinal lesions, and all or most of these symptoms. I have not been able to find if celiac disease will cause a positive result for oligoclonal bands or antibodies in the CSF. I am very worried that her neurologist will continue to diagnose her disorder as MS, when her celiac disease (and ultimately malnourisment) has been presenting MS-like symptoms. She has told her neurologist that she had celiac disease, and the doctor had basically no reaction.
Can anyone provide any useful information or has had any similar situations where they were on a path to MS diagnosis, had lesions and everything... but it was ultimately a misdiagnosis?
As of right now she is on a gluten-free diet, and I am hoping that her symptoms cease. She has said that they have in the past. However the lesions may always be there, which her neurologist may not understand can also be caused by celiac disease.
Welcome to the board, Emmpra. Although it seems like it is your girlfriend who needs to be here She has been very careless with her health. But it is not my duty to lecture on the known hazards of a celiac continuing to consume gluten products.
It is my humble opinion that the chances of her symptoms being caused by gluten are actually quite high. My understanding is that the spinal tap is the defining test between gluten ataxia and MS, especially if some of them have abated in the past when she has refrained from gluten consumption. As you point out, the unidentified bright objects in the brain can be caused by either, and do not usually dissipate. Many of her other symptoms may well totally resolve on a gluten free diet, although the neurological symptoms take much longer to do so than the GI symptoms and there is no guarantee of complete resolution.
It is not unusual for neurologists to not make a connection between MS-type symptoms and celiac, although how they manage to avoid knowing this I do not understand. We have a poster by the name of ravenwoodglass. If you search her name in the members section and read her personal history of attempting to be diagnosed you will find much correlation with what your girlfriend has experienced, as far as ignorance of the symptoms of neurological celiac.
Good luck to you both on getting to the root of these symptoms, and I hope your girlfriend has learned the eating-gluten-free lesson. It is not a part-time job -- it is a full-on, full-time job and one she owes herself if she wishes to be well.
"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
I can't address the lesions. Because I don't know about that. But she needs to get copies of all labs. If there are vitamin deficiencies, she needs to address that before anything else! I was low in potassium and it left me in horrid pain and unable to walk at all. She also needs to stick to the gluten-free diet. If she doesn't, things won't get any better.
I just went through a huge work up for MS last fall and my symptoms did end up being due to gluten.
That being said, if there are 2 or more lesions in the brain and/or along the spinal cord, then she likely has MS as well.
There is a high link between celiac disease and MS and a lot of people have both conditions, just like other autoimmune conditions. Gluten and dairy can make MS symptoms worse. When I was in the middle of my diagnostic work up last fall, I did a lot of reading about this.
I hope that she starts to feel better and she is so fortunate to have you by her side!
"I have done some research and I have found that celiac disease can cause white matter lesions and spinal lesions, and all or most of these symptoms. I have not been able to find if celiac disease will cause a positive result for oligoclonal bands or antibodies in the CSF."
If she doesn't have a positive result with the spinal tap for the bands then it is highly likely that her problem is from gluten ataxia and not MS. She could of course be dealing with both but I would bet on the celiac being the issue. It can take a long time for the neuro issues to resolve on the diet but the longer she ignores the celiac diagnosis the longer it will take her to heal. The longer she ignores it also the more chance she has of developing other problems including but not limited to issues with speech, bladder and bowel control and even swallowing as well as the balance issues. By the time I was diagnosed I had trouble speaking, could barely walk, and my thought processes were severely impacted. I recovered movement but still have (and I suspect always will) have problems with memory and some permanent nerve damage. I went undiagnosed for decades though. She was lucky, although she may not feel lucky, that she was diagnosed young. Her being strictly gluten free will not impact the testing for MS or any other issues other than the celiac. Please encourage her to get strict with the diet and it might be helpful for her to come here for some support. I hope she makes the effort needed to keep herself healthy. The diet isn't easy but it is doable and we are here to help you both in any way we can.
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying "I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45 Blood tested and repeatedly negative Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002 Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis All bold resoved or went into remission with proper diagnosis of Celiac November 2002 Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56 Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007 HLA-DQB1 Molecular analysis, Allele 1 0303