I was diagnosed with chiari december 2013 and had so many symptoms. I went to see Dr. Ellenbogen and he said based on my MRIs he did not feel I was a candidate for surgery because I still had decent CSF. He said he felt that possibly though many of my symptoms seemed neurological that he did not feel they were all from the chiari and sent me to a neurologist to see what they could do. She offered me medications for migraines and a localized block to see if that would help with migraines.
I was diagnosed with celiac on december 23, 2014 and since removing gluten from my diet 60% of all my symptoms have gone entirely. I feel confident that once the vitamin and mineral deficiencies are addressed and my small intestine can absorb nutrients normally that many more of the symptoms will be resolved. For those of you unfamiliar with celiac, it is an autoimmune disease that when gluten enters one's body the immune system then mistakenly attacks the small intestine. Damage to the small intestine results in the in ability to absorb nutrients and that results in deficiencies which cause a lot of symptoms.
I'm posting this because I felt incredibly helpless when I got the chiari diagnoses and I was so sick, exhausted, anxious and in pain. I've read that chiari is common among those of Celtic ancestry well, celiac is also very common among those of Celtic, Irish and Scottish decent so perhaps I am not alone with this duel diagnoses and if anyone can experience the relief I have then it is worth sharing my story.
Before I quit eating gluten I had complete brain fog, I was diagnosed about 2 years ago with adult ADHD. I dealt with constant chronic anxiety and occasional panic attacks as well as depression. I had headaches, migranes, dizziness, numbness and tingling and pain in my extremities. I had once been a dancer and now felt clumsy and unsteady and my muscles felt weak. I was tired ALL of the time everyday. I struggled with anemia, I took iron regularly but could only barely stay inside of the normal levels. I had slow and sluggish digestion, constipation and frequently it felt like my food just wasn't going anywhere so I would feel toxic from poor digestion. I began having sleep paralysis and it was terrifying, I began to be afraid to go to sleep. I didn't have a lot of irritable bowel symptoms that people think of when they think of celiac, my symptoms were more varied and neurological.
As I said earlier, the majority of my symptoms are gone.I am still dealing with low energy and depression and slow digestion as it can take time for the gut to repair it'self. But I have hope that this too will resolve in the next year or so. Did you know that 70% of the serotonin in the human body is in the intestines and that is where it is made, serotonin is the hormone that makes you feel happy(ssri's keep serotonin in the brain for longer periods of time that's how the help people feel less depressed, well, I'm hoping to heal my intestine and get back to making normal levels of serotonin). The numbness and tingling I think was actually caused by being copper deficient. I was deficient in copper, zinc, vitamin d and iron, which caused most of my symptoms.
As far as I can tell most of my symptoms are from the celiac those that are clearly not at least as far as I can tell are the neck pain and nerve pain when I lie on my right side and the pressure headaches that I get when I sit or stand for too long. I still do not do any heavy lifting, straining, inversions or rough activities because that causes me a lot of pain in my head and neck from the chiari.
The biggest difference I noticed in just a few days gluten free was that I was no longer anxious, at all. I was bogged down with anxiety for years and it was just lifted, once I was no longer exposed to a substance that caused my body to attack it's self I stopped feeling afraid, it's so simple and such a relief.
They way I found out was because I was still attributing all of the symptoms to my chiari and the regular doctors had nothing they could offer me so I went to a naturopath, Dr. Bruce Milliman and he heard me out and then said, why are you anemic? You eat red meat and take iron. I kept driving the point that what I needed was a way to deal with the chiari, maybe take anti-inflammatories to reduce any inflammation in my brain, I was surprised by his response, he said I could try taking a regular lose dose of aspirin or ibuprofen for inflammation but the very best was the turmeric based curcumin supplement by Thorne pharmaceuticals(his wife a cancer survivor takes it to keep the cancer at bay). But he kept asking why was I deficient and he didn't feel that the slow digestion matched the chiari diagnoses as a symptom. So I went back to my primary doctor and asked, why am I deficiant? It was like a light bulb went off after 6 years of bouncing in and out of the acceptable iron range. She had me do a blood test called a celiac serology reflex panel which is 2 tests, an Anti tTransglutaminase, IgA and a Anti Deaminated Gliadin, IgG to test my blood for reactivity to gluten. Normal is 0-13 I was >250, the test only goes to 250, then they just say over 250. Three weeks later I had an upper endoscopy done and it confirmed the celiac diagnoses and showed mild to moderate damage in the small intestine.
Now I am gluten free and it's been so profound , such a relief. It's challenging learning about the hidden gluten in so many foods but it's not impossible. I'm eating simple whole foods and my health is returning. When I got the chiari diagnoses I felt like finally I was vindicated in some way, like for years I had had all these weird symptoms and I was told it was all in my head then to be diagnosed it was like, 'Yeah, it is all in my head actually, it's my giant brain" but then I felt more and more frustrated, even hopeless because there seemed to be nothing I could do about it, surgery wasn't an option (my tonsils are about 8mm and I have a shadow of a possible syrinx as well but still decent csf, though I think that varies at times). When I got the celiac diagnoses I was confused but releived as well because there was something I could do about how I felt. I have to say even if it would have been negative I would still be researching how to reduce inflammation in the brain (often caused by eating grains or food intolerances) I would be taking my fish oils and turmeric and drinking tons of water and trying everything I could.
Celiac is the most common autoimmune disease, it is under diagnosed, 1% of the population has it and 30% are genetically predisposed to it, it can be activated at any age. It's easy to get tested for it. Even if you do not have celiac you can look into food allergies/intolerances, IBS or malabsorbtion issues as any of these can cause similar symptoms to celiac. I wish health and wellness to you all.