Advice sought. Daughter told she has spinal cyst/syrinx

@laniek It sounds like you are doing a good job of figuring out all the issues for your daughter. Finding the Celiac disease sounds like a key piece of the puzzle which has probably affected absorption of necessary nutrients and possibly caused the iron deficiency. From what I understand, Celiac takes awhile to heal after you give up gluten entirely. I had to do that myself twenty years ago when my doctor wasn't paying attention to me asking to be tested for gluten, and a lot of doctors at that time disputed the existence of Celiac disease. I never was tested, but everything improved when I gave up gluten. I had also acquired some other food allergies likely due to a leaky gut letting undigested foods into my blood stream from gut inflammation before I had figured out to avoid gluten. I figured out all of that with an elimination diet. When you get down to eating only safe foods, inflammation improves and you will be able to tell right away if another food causes a reaction. The other allergies to environmental inhaled factors and other foods are just adding to the inflammation load.

I was treated by a functional medicine doctor who was an environmental allergist who tested me for specific things in his office and they mixed custom vials of antigens for me and taught me how to do my own allergy injections which do help a lot in controlling allergic asthma. Some of this falls outside of mainstream medicine. If the issues causing the inflammation can be addressed and corrected, it would give her a better chance of being seen for any neurological issues. Surgery itself will add a lot of inflammation if that is something she needs due to the syrinx, and uncontrolled inflammation might make a surgeon hesitate to help.

I am a spine surgery patient who was turned down 5 times by non-Mayo surgeons and one of them thought that I could have an inflammatory disease and didn't know if surgery would make me better or worse. Surgeons always want a patient to have a positive outcome. This is something you can discuss with the neurologist and also what treatment she would need and in what time frame as treatment for the syrinx. It may be best to try to solve the inflammation first, so it doesn't become a reason for a surgical refusal. I didn't have inflammation causing my neurological symptoms, it was because spinal cord compression was causing pain all over my body from compression in my neck, and a lot of spine surgeons missed that. That is why I came to Mayo after being denied help for 2 years by local spine surgeons.

Did she have an emergency room visit because of an allergic exposure to mold spores? That would be very hard to avoid depending on where you live or if there are any issues within the home that causes mold growth. That could be a water leak, but also something as simple as a wet sponge that grows mold after use, or spores that grow inside the drain in the kitchen sink or garbage disposal. I have to be vigilant about the sink and to not leave dishes in it because it grows mold under them, and it has to be scrubbed frequently. We have well water, and I don't know if that is a factor, but I live next to a river and wetlands. Inside we run HEPA filters all the time which need to be maintained because if overloaded, they contaminate the air with allergic dust. On my doctor's advice, I purchased my air filters from https://foustco.com/

I have allergic asthma and was put on a Qvar prescription for that (which is a steroid preventative inhaler) by a pulmonologist. I don't always need it and use it when I have exposure that causes issues. I had an allergic reaction to my first Covid vaccine, the Pfizer shot which uses polyethylene glycol (PEG) as a component which did require the emergency room, and I've also had a bad reaction to a spinal injection, and a flu vaccine, and a contrast material injected for a diagnostic MRI. Perhaps all of this is for a similar reason. I have to question everything. I was able to tolerate the J & J vaccination.

Here are some links to information that may help and a provider search on the AAEM website. I think her best bet is an environmental medicine doctor to get all the allergic issues under control as well as correcting her diet so it doesn't cause further inflammation and allergies. This is what I did that got me back to good health. You still need the other medical specialties, and you'll be helping them by solving what you can do first.

https://www.aaemonline.org/ (blue button upper right corner for provider search)
https://www.ehcd.com/ (this practice started the field of environmental medicine and has resources for doctors such as medical volumes)

If you do want to seek care at Mayo, you may check if your insurance is accepted at this link or call them.
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance
If you wish to seek care at Mayo Clinic you may use this link. http://mayocl.in/1mtmR63

Do you think you might look for an environmental allergy specialist? Let me know if I can be of further help.

Jennifer,

Many thanks for your long response. Wow! There is someone else with such similar issues. Thanks for all the links.

We've been trying to improve health for years and years.
She had her first anaphylactic response to airborne allergens - at the time and for several years after the cause remained a mystery- in 2006, I believe, in late summer. She had an "echo reaction" (or the air quality was still bad for her) and was back in ER the next evening and kept overnight for observation.

We've had HEPA furnace filters forever....
and stand alone HEPA filters since ??? as asthma was diagnosed before allergies ( so too acid reflux by gastro people at the U). HEPA vacuum bags since the asthma diagnosis ( upper elementary school??? ) . HEPA filter for her room at college. HEPA air cleaner in her bedroom for ages. We have even more aircleaners in our covid era home.

We had testing done at 2 or 3 different places before going to LaCrosse, WI, where the airborne allergens and others were identified. She has been taking drops for allergies for about 9 years. These have included gluten as it was identified as a food allergy vs an immune system issue then. They no longer include gluten, but that is a very recent change following results from her hospital admission and testing a few weeks ago.

She was in ER a few times for airborne allergen anaphylactic reactions and probably dealt with the issues at sub-crisis levels much more as she went to college in western MN by farms. (mushroom spores and a soy mold are huge triggers). The last ER anaphylactic event, she was 3 hours on a steroid IV after 2 epi-pen shots for the crisis and 2 days of 40 mg of steroids to prevent crashing. Terrifying. That was about five years ago.

She did the elimination diet as well...about 8 years ago and everything reintroduced caused some problem. We cook for her diet. She had a fridge and a freezer in her dorm room through college and we brought foods to her. I think she has been good about her diet... especially about gluten, eggs, and soy, but we have not been meticulous re contamination in our home. We read labels. We know products change their ingredients and once okay things stop being okay. I'm pretty sure that sugar and non-corn based sweeteners are a treat for her and cravings happen! though I know the sugar is not good. We were hoping for better results - at least the acid reflux has been reduced and no more omeprazole.

She probably hasn't been 100% on time with her drops ( often refills later than expected).... but I think she has been good about the diet. Perfect ? Not sure.
She briefly went to an "alternative" provider recommended by her U physician five (?) years ago and who identifies with functional medicine. She says it made her feel better,- though it was reviewing the self-reporting forms she completed at the start of each visit with the doctor that convinced her of that --but samples were lost in the mail ( pity the person who had to deal with that) and she found it cumbersome to do as a student living in the western part of the state and then too expensive to do as an under-employed recent grad. Perhaps we need to revisit this!

The vaccines - We're hoping one - maybe Nova vax - will be possible for her soon. She N-95s and goggles up when indoors outside the home. The rest of us avoid indoor spaces or use a mask indoors when we can't avoid being indoors.

She was off asthma meds some time after following her allergy recs., but oxygen levels were low on check up with an asthma specialist this winter and she has and uses an inhaler again.

The Celiac diagnosis is huge. Her drops could have been aggravating the situation. She has avoided gluten in her diet for years.
She has an appointment to come about that, but the post-MRI neurologist appointment is this week.

It is really hard that the inflammatory response still has to be controlled as we have been trying to control it for years via diet, allergy meds,and air filtering; but the problems just seem to multiply and intensify. We'll keep trying. Hoping even more attention to gluten-free helps.... but who knows maybe something else yet to be identified is also playing a role. I'll keep running orange and lemon rinds through the disposal!

It is reassuring to know that you are still here, feeling healthier and dealing with many similar concerns. Thak you for your thoughtful response.

@laniek You have been doing a lot. I have never had an anaphalactic response, so I really sympathize with how serious exposure your daughter's situation is for her. I did have my tongue start to hurt after a Pfizer Covid vaccination and I went to the ER for that and was given steroid and antihistamines by IV. I don't know how far it would have gone because I caught it early as it started 45 minutes after the shot. On subsequent days, I did have facial swelling and face tingling and headache, but was able to control that with antihistamines and my steroid inhaler. After 3 days the symptoms resolved. I think it was a reaction to the polyethylene glycol (PEG) in the vaccine. I had reacted to a flu vaccine before and a spinal injection, as well as a contrast dye given during an MRI and those may have had PEG in them. My doctor told me to be careful with injected things.

I have had lots of breathing issues myself near farms with moldy manure. I'm sure you may have already considered that living elsewhere and away from farms would help. I also have a lot of issues in public with people wearing fragrances and it just shuts down my lungs. I tested polysorbate 80 by eating at Dairy Queen to see if I would react. I did feel lousy and headachy, but just for a day. It is in the J & J vaccine instead of PEG. I got that vaccine and did OK by taking antihistamines and 3500 mg of vitamin C and using my steroid inhaler ahead of time per my doctors instructions. I did OK, and felt like I had the flu for 48 hours, but that was the immune system kicking in.

My environmental allergy doctor could also make drops to treat allergies, but he told me they didn't work as well as the injections. The injections are created as the maximum tolerated dose that does not cause the weal to grow excessively during testing and that is used for the treating dose. You may want to consider going to the Environmental Health Center in Dallas. You can purchase volumes written for doctors there and some books too that give a lot of information. I find when I am in Texas, that I have lots of allergies. There are always things in bloom.

Another good way to clean the garbage disposal is to fill the sink with hot water and soap, then pull the plug while running the disposal so you flush it with a lot of water all at once. Do that while grinding lemon rinds to scrub the walls. I think what happens is that food debris gets stuck on the sides and grows mold. I also use a dish washing brush and put it into the disposal to brush and scrub the walls and the underside of the opening. You can also dip that brush in hydrogen peroxide which kills mold without exposing you to allergy triggers because when it reacts, it turns to water.

For natural sweeteners, you might try stevia. You can get organic stevia powder at Trader Joes. Sugar and simple carbs cause inflammation and cause overgrowth of the candida yeast in the gut. Technically that is a gut fungus, and she could be having an allergic reaction to that if she is feeding the yeast with sugars. It is a hard habit to break, but I have done that and done a diet with no sugar and low sugars in natural foods. In about a week, there is a Herx reaction where the yeast dies off from starvation that makes you sick, but taking vitamin C helps (it also helps allergic reactions.) You can also go by the glycemic index for foods and don't eat foods with an index over 50. Also consider ingredients in supplements, vitamins and prescription pills; any of those may have gluten.

I am not a perfect housekeeper, but we built a home with all hardwood floors and tile in the entryway and bathrooms. No carpet because of formaldehyde outgassing, and it traps dirt and mold spores. We used formaldehyde free insulation and I seal coated the plywood floors first with AFM Safecoat during construction before the pre-finished hardwood was laid on it. We didn't want the floor varnished to cause outgassing.

Does she have silver amalgam dental fillings? When those are old, they leach mercury as a gas. I had all of mine removed by a biological dentist and replaced with safer composites. I had old root canals that were failing, and those are filled with cadmium, a heavy metal in the gutta percha material the dentist packs in the tooth. Eventually they leak and send the heavy metal and bacterial infection into the jaw bone. I had 4 teeth involved because of breaking teeth as a child and dental work 50 years old. When I had those teeth extracted, my asthma improved dramatically. I now have zirconium dental implants with zirconium teeth that have no metals in them. The old filings with mercury also caused an autoimmune thyroid issue, and I have to take desiccated pig thyroid. I test as borderline now, but my thyroid is spent. When I still had silver filings in my mouth, those numbers were off the charts and could not be read.
My metal free existence didn't last long because I broke my ankle a year ago and have titanium surgical plates. Titanium isn't pure and I am reactive to metals and gave up pierced earrings years ago. The plates hurt and I have chronic hives and have to stay on antihistamines. It's been long enough, and the plates are being removed in a month. My doctor didn't believe there was a connection, but I do, and I will know for sure if my asthma improves when they are removed and if the hives stop. Thankfully, pain is a good enough reason to proceed.

I don't just have HEPA filters, they also have coconut shell carbon that absorbs VOCs, particulates and solvents from the air. I do find the smoke coming from the western wildfires very aggravating for my breathing. Good for you for figuring out the link to the gluten allergy drops. I have never heard of any doctor trying to treat a gluten issue that way. There are supplements you can find that are digestive enzymes that break down the gluten because she can't do that on her own. Those are supposed to protect against accidental exposure. Eating organic is probably a good idea. With everything she is reacting to, she doesn't need pesticides in addition. The gluten allergy drops have to be the cause because she should not be reacting on a test for gluten if she has been gluten free for years. There has to be gluten in her diet, and the drops must be the culprit. Great detective work on your part! I think she will get better. It takes time and her GI tract has to heal. Celiac disease causes the villi in the gut to be flattened and she looses the surface area she needed for proper absorbption of nutrients, and there is a lot of inflammation, all leading to malnutrition. You are a super mom who really cares! Reach out to me if there is anything else you'd like to talk about.

Update: Celiac disease confirmed. Cysts bieng monitored. seizure meds prescribed to mask efffects.

@laniek Thanks for the update. is your daughter improving? I see my last post to you was at the beginning of August, and since then, I did have surgery to remove the titanium plates from my ankle and I am metal free. I am still healing and my breathing improved, so my asthma isn't as bad even now in the peak of allergy season with high mold counts. I still have lung congestion with allergy exposure, but it's manageable with my allergy shots and inhalers.

One option you could try to overcome malabsorption from celiac disease would be IV administration of vitamins, etc. Some functional medicine doctors do this since it is more effective than depending on the body to absorb nutrients. I know my functional medicine doctor offers this for optimal health to anyone.

Glad you are feeling/breathing better! Funny you mentioned the IV - She did have 6 IV iron treatments this summer and says her blood iron levels looked good when checked a few weeks ago about a generous month after the last Iron-IV treatment. I wonder about vitamins.... Will pass that on to her.
She says it could be 9 months to a year before she sees improvements( recognizes??? heals?) from the gluten free and avoid gluten contamination diet. She just got the celiac confirmation a few weeks ago, though it was mentioned as a possibility in June. Month 1 of her much more careful approach to gluten free and I think she slipped once by snacking on "safe?" parts of a snack box ( compartmentalized) that also had pita. In progress. She saw it could be a problem the next day. Lots of planning ahead for hunger at work in this!!!!

Did by chance your daughters syrinx get better after gluten free diet?

Hey Lanie just curious how is your daughters syrinx. Has it remained stable?