Abnormal Celiac & ALS

[Wburell]

So I apologize if this has been covered. I'm in a tizzy. Ive had als symptoms for almost 2 years starting with foot drop. Was told 99% chance of ALS by duke and my father had ALS. Was basically told my last outs possible were copper deficiency and Celiac. Well my Celiac test came back abnormal along with vitamin D deficiency despite drinking 4-6 cups of milk a day in my daily/nightly protein shakes. Going back I see a ton of symptoms related to celiac such as rashes, fatigue, headaches, bloating, etc etc.

They are setting up a biopsy to test but obviously my mind is going 100mph. Is it common to have both celiac and ALS?

I've found alot of links saying gluten sensitivity can be linked but not alot of information specific to celiac. Again sorry if this has been beat before.

 

[Nikki J]

Celiac can be a mimic. There is a paper which is a case study of someone who had apparent ALS but turned out to have celiac. He got better when he went gluten free with only slight residual. Believe though that a significant proportion of the US population has the antibodies (30 percent??) but the number who have celiac is much lower.

Someone here ( Nuts? gooseberry? Sorry I can't remember) had their husband test positive but the biopsy was negative.

Vitamin d is worth bringing up to therapeutic levels as well.

Good luck. Please let us know

 

[ShiftKicker]

I've heard of gluten being a culprit in neurological issues before. I had hoped this was my problem when I started experiencing spasticity. It is certainly possible you have the terrible luck to have comorbid disorders. I am hoping this discovery will help reduce your symptoms by treating the celiac disease.

It takes a bit of digging, but there are a few papers in PubMed that examine the link between a large spectrum of neurological disorders and gluten/celiac disease.

I am glad your specialist is pursuing the celiac connection. I hope it means creating a more comprehensive treatment plan that helps with your symptoms.

Fiona

 

[Nikki J]

See this reference Nature Clinical Practice Neurology | A case of celiac disease mimicking amyotrophic lateral sclerosis | Article

And this White Matter Lesions Suggestive of Amyotrophic Lateral Sclerosis Attributed to Celiac Disease

 

[Wburell]

Thanks for the fast responses. Yea my Dr. explained it was a mimic that has popped up in numerous cases. I don't have any upper symptoms right now and my past neuro was very confused by some foot movement returning at my last appt. I was on a super clean diet/exercise program for years before I had a wakeboarding accident. I fell off the clean diet and hit the pizza diet during the injury and stopped exercising. Never really thought about that until it came up. Also I went back on the clean diet and my foot regained some movement. I could just be reaching but I pounded a few rolls at dinner last night and have never felt my symptoms kick so hard. Fasciculations and stomach cramps are like hammers right now.

 

[Nuts]

We had high hopes when tests showed possible Celiac in my husband, but as Nikki said, the biopsy came back negative.

I hope and pray that in your case it IS Celiac's Disease. What a wonderful gift that would be!!!

Please do let us know.

Becky

 

[KimT]

They have been exploring gut health as relates to ALS, not just Celiac. However, Celiac is, indeed, a mimic. I gave up gluten some time ago because I had stomach pain.

Don't discount the low Vitamin D in contributing to the symptoms. I take 5,000 IUs of Vitamin D. My GP has many MS patients and sees Vitamin D deficiencies and Zinc deficiencies in her patient. She prefers the "D range" to be 50 - 70.

 

[Wburell]

I started taking 2000iu a day of Vitamin D after talked to my Doctor. I felt better until yesterday. Overdid it in the yard and got a few leg/back spasms. I will say that overall my fasciculations have been far less annoying the last few days. My diet and medications are so in flux though I just don't know what is driving what.

 

[swalker]

It appears to be pretty normal to be tested for Celiac as part of the diagnostic process for MND.

It was among the firsts tests done for me. At my first neurologist appointment I mentioned catching my foot while walking and he detected clinical weakness in my shoulders. He asked about swallowing and I described some mild problems I was having at the time.

As a result of all that he ordered an endoscopy with a biopsy to check for celiac and other things. He also ordered many other tests (MRI, spinal tap, manometry, blood work, etc., etc., etc.). It was after all those tests that I had my first of 4 EMGs, a muscle biopsy, more MRIs, and a couple of CT scans.

I was negative for Celiac, which was a great relief at the time (I did not know there was potential for a diagnosis of MND back then).

I am hopeful you will be diagnosed with Celiac or some other mimic of ALS. Please keep us informed!

Steve