Names and Labels
This past week was a landmark week in this (almost) three year story: we have some positive results!
I have been diagnosed with small fiber neuropathy AND celiac disease.
Small fiber neuropathy (SFN) occurs when the small fiber nerves in the peripheral nervous system (meaning not the brain and spine, but the nerves to the rest of the body) are damaged, destroyed, or lacking in number in some way. In my case it seems most likely they've been destroyed over time. Having a reduced number of these nerves probably explains many of my ongoing symptoms: numbness and tingling in extremities, some of the muscle fatigue, headaches, blurred vision, etc. I will be following up with the neurologist in a couple of weeks to discuss a treatment plan. There are some medications that can help alleviate and manage the symptoms (for example, one of the meds used to manage myasthenia gravis, a diagnosis they strongly considered a candidate). This will likely be lifelong and the ability of my nerves to recover somewhat depends on the root cause of the damage. Celiac disease can be a contributing factor, so managing that disease could give my nerves the opportunity to regenerate. There may still be additional layers to this; as autoimmune diseases often stack, I continue to have labs drawn and follow up with rheumatology as well. There are some diseases that are also closely related to small fiber neuropathy, so I hope to find out more from my rheumatologist this week. While I may never have full recovery from the nerve damage, the neurologist is hopeful we'll see improvement and at least partial recovery in time.
As far as celiac disease, I haven't had the classic GI symptoms, but some of my neurological symptoms may have been related: headaches, fatigue, brain fog, etc. This week I eliminated gluten from my diet (I had to continue eating it until we were through testing to ensure accurate results). It's been a bit of a steep learning curve and I sometimes feel like I'm putting my nursing background to work and setting up a sterile field to cook my food, but I'm beginning to work out systems and meal plans that are doable for me. I wish I could say I feel phenomenally better; I actually feel worse having cut gluten from my diet! I do have GI symptoms now, but I've been assured by the GI nurse practitioner that this can be a normal part of the transition.
We are excited to have some conclusive (positive!) results after such a long wait. When we told the kids, they cheered, "Yay, Mom, you have small fiber AND celiac disease! Woohoo!" Then we all had a moment when we realized we were cheering and excited that I had two chronic illnesses. Still, it's encouraging to have some answers and direction. At least we know what we're facing. There may be more layers to unfold in the months to come, and we'll discover as we go along how to manage this and hopefully achieve a new level of health and wellness.
I cleared a shelf in our fridge for my foods to minimize the risk of cross-contamination. It's labeled temporarily until we all get used to the new system. My kids, ever supportive and helpful, left me a little surprise: a hideous plastic rat. They sure know how to make a person feel better about things...
I have been diagnosed with small fiber neuropathy AND celiac disease.
Small fiber neuropathy (SFN) occurs when the small fiber nerves in the peripheral nervous system (meaning not the brain and spine, but the nerves to the rest of the body) are damaged, destroyed, or lacking in number in some way. In my case it seems most likely they've been destroyed over time. Having a reduced number of these nerves probably explains many of my ongoing symptoms: numbness and tingling in extremities, some of the muscle fatigue, headaches, blurred vision, etc. I will be following up with the neurologist in a couple of weeks to discuss a treatment plan. There are some medications that can help alleviate and manage the symptoms (for example, one of the meds used to manage myasthenia gravis, a diagnosis they strongly considered a candidate). This will likely be lifelong and the ability of my nerves to recover somewhat depends on the root cause of the damage. Celiac disease can be a contributing factor, so managing that disease could give my nerves the opportunity to regenerate. There may still be additional layers to this; as autoimmune diseases often stack, I continue to have labs drawn and follow up with rheumatology as well. There are some diseases that are also closely related to small fiber neuropathy, so I hope to find out more from my rheumatologist this week. While I may never have full recovery from the nerve damage, the neurologist is hopeful we'll see improvement and at least partial recovery in time.
As far as celiac disease, I haven't had the classic GI symptoms, but some of my neurological symptoms may have been related: headaches, fatigue, brain fog, etc. This week I eliminated gluten from my diet (I had to continue eating it until we were through testing to ensure accurate results). It's been a bit of a steep learning curve and I sometimes feel like I'm putting my nursing background to work and setting up a sterile field to cook my food, but I'm beginning to work out systems and meal plans that are doable for me. I wish I could say I feel phenomenally better; I actually feel worse having cut gluten from my diet! I do have GI symptoms now, but I've been assured by the GI nurse practitioner that this can be a normal part of the transition.
We are excited to have some conclusive (positive!) results after such a long wait. When we told the kids, they cheered, "Yay, Mom, you have small fiber AND celiac disease! Woohoo!" Then we all had a moment when we realized we were cheering and excited that I had two chronic illnesses. Still, it's encouraging to have some answers and direction. At least we know what we're facing. There may be more layers to unfold in the months to come, and we'll discover as we go along how to manage this and hopefully achieve a new level of health and wellness.
I cleared a shelf in our fridge for my foods to minimize the risk of cross-contamination. It's labeled temporarily until we all get used to the new system. My kids, ever supportive and helpful, left me a little surprise: a hideous plastic rat. They sure know how to make a person feel better about things...
