No, I haven't heard of compounding pharmacies. But that does sound exactly like what I need, though. How would I find one?
And yes, I realize healing is going to be extremely rough. I met with my new Lyme doc today and she actually has Lyme disease AND Celiac disease herself, so I feel like I'm in good hands.
Exactly. It's like the treatment for one of my conditions contradicts the other. Oy.
So where do people who react to trace amounts of gluten get their probiotics? It seems like anything that is processed I can't handle, so I'm scared to trust any brands. For the last week or so I've just been drinking kombucha.
My god, I'm so sorry to hear you're having to go through that. I'm pretty convinced now it could be all the herbs putting my immune system into overdrive / making the celiac so severe plus trace amounts of gluten I've been possibly ingesting in those herbs. I'm going to see a new Lyme doctor tomorrow to see what she thinks. I have a feeling I'll have to stop the herbs and start antibiotics, which is devestating news. But at this point I feel like I'm slowly dying of malabsorption/malnutrition and don't have much of a choice.
Thanks so much for sharing and I really really really hope you find some relief soon. <3
Yeah, I'm realizing that absolutely nothing processed is safe for me. I verified some mustard that is tested at 10ppm and still react to that. So I'm thinking I've been ingesting trace amounts without knowing for the last year. Now I'm worried that the damage from that might be significant. So where do people that are as sensitive as I am get their probiotics? For the last week I've just been drinking a bunch of my friends homemade kombucha.
Lyme disease is a huge mess. There's a lot of controversy surrounding every aspect of it, from diagnostics to treatment to even the existence of chronic lyme. If you were bit by a tick and got to a doctor within a few days, yes, antibiotics for 2-3 months is the standard and will do the trick. However, if you were bit by a tick without knowing and didn't develop the infamous bullseye rash (50% of cases don't) or if you were bit by a tick and DID develop the bullseye rash but when you were taken to the doctor he said "This looks exactly like the EM rash, but Lyme doesn't exist in Texas." and you were refused antibiotics and that bacteria stayed in your body for 20 someodd years before rearing it's ugly head, then no, 2-3 months of antibiotics is not going to do much at all. Most people catch it late and by then it has spread and multiplied to a ridiculous degree within their body and therefore they have to be on antibiotics for years and years, which is obviously not good for the body. When I was dignosed a year and a half ago long course antibiotics were illegal in Texas. There was 1 Lyme doctor in the entire state and he could only use herbs because of the law. I had the choice of flying out of state for treatment (couldn't afford) or giving herbs a shot. From all the reading I've done herbal protocols have the higher success rate anyway with late stage lyme (I can't remember exactly but I want to say it was somewhere around 80%, while antibiotics had a 40% success rate with 20% of those patients continuing to relapse) so I decided to try the herbal route first. If it didn't work I would go find a new doc out of state and begin antibiotic hell.
The herbs started working almost immediately for me. It was insane. I was bedridden by the time I got on them with half my body paralyzed (including my face, bells palsy) and within a week I was up and mobile and back at work. Herbal protocols work by putting the immune system into overdrive and from there the immune system suppresses the bacteria. Within 6 months of being on the herbs is when I started developing all the celiac symptoms. My new theory is that being on herbs and putting my immune system into overdrive may have set the wheels in motion for autoimmune diseases I'm genetically predisoposed to (2 aunts with lupus, 1 uncle with Sjogren's/suspected lupus, mom and grandmother currently being tested for celiac).
So. I am actually about to hit the road to see a new Lyme doctor. When I was dx'ed my friends were in uproar about the lack of treatment available here but I just shrugged and said that if this disease is spreading as fast as they say it is, then it's only a matter of time before someone in power gets sick and things change. Which is exactly what happened. Some senator (I believe) got dignosed with Lyme and next thing you know a bill passed into law legalizing long term antibiotics for lyme treatment here. Now there are 9 Lyme doctors in Texas. WOOHOO!
Yeah, the more I'm calling around the more I realize that some may be "Certified" but they still share manufacturing facilities with other glutenous products. I've learned the hard way that I react to levels below 20ppm, so that's a no go for me. There's only been one brand I've found with dedicated facilities (Country Life) (not only do they have dedicated facilites but they also test for levels at 10ppm instead of 20). I completely stopped taking all my supplements the other day just to test it out. The main things I'm concerned about for maintaining treatment for my Lyme are all herbs, though, so I was thinking maybe tinctures would be safer? I called Herb Pharm and they have dedicated facilties. Woot!
Both Allergy Research Group and Kirkman Labs look promising, thanks! I emailed them to ask about manufacturing facilities. Would yall happen to know if they have dedicated facilities?
I've found out the hard way that I am SUPER SUPER SUPER sensitive and I really need to take a bunch of supplements/vitamins for another health condition. Where do you get your supplements? What are the safest brands?
I'm aware I need fruits and veggies but I react to all horribly. Anything with any amount of fructose is by far the worst. The pain is so awful I spend the rest of the day debating about whether or not to go to the emergency room.
I'm also highly suspicious of the herbs. Over the last week I quit taking them just to see if I missed something there and so far it hasn't made a difference, but maybe my body just needs to go without them longer.
Where do most super sensitive celiacs find their herbs? Is there a particular brand that's super safe?
So I've only been able to eat white potatoes, white rice and seeds for the last few months without violent pain. I'm about to try chicken stock, my first bit of meat in over a decade. My doc was originally suspecting Small Intestine Bacteria Overgrowth as the cause to this severe malabsorption, and because the tests for it aren't too reliable he decided to do a trial of antibiotics. If they made any bit of difference it would be evidence of SIBO, if not on to the next suspect.
I have Lyme Disease and I've been (successfully!) following an herbal protocol for the Lyme the last few years, but the goal with herbal protocols for Lyme are more about boosting the immune system and letting it suppress the bacteria, so I knew this experiment with antibiotics would stir / anger the Lyme since that bacteria is still (and probably always will be because of how long ago I contracted it) in my body. Boy was I right. If I had any doubt that I have Lyme disease that doubt was completely eradicated when I started the antibiotics. I had an especially horrible herxheimer reaction (worsening of symptoms as massive die-off of bacteria overloads the body with toxins) that scared the living shit out of my boyfriend. As expected, most my old lyme symptoms came roaring back (limb numbness, migraines, shoulder pain, muscle pain, tinnitus, abdominal cramps/pain, muscle spasms, brain fog, anxiety, depression, fatigue, nausea, back pain, black outs, tremors, etc etc) to a degree so unbearable I got suicidal. The pain just broke me in half. I somehow withstood the 2 weeks and came out on the other end with no change to malabsorption issues. I can still only eat potatoes, rice and seeds. (and am now in a world of lyme hurt)
So, doc has ruled out SIBO. He's moving on to tests for refractory celiac. I'd never even heard of this and what I've read isn't good. Can anyone tell me more about it? Is the testing accurate? From what I've read prognosis usually isn't good so I'm obviously worried.
(And before you can suggest it, no, I don't think there's any way I could still be ingesting gluten without knowing. I'm only eating potatoes, lundberg white rice and david brand seeds. All my supplements I've called/triple checked on gluten content and even had 2 nutritionists look through them. All my beauty products were long ago replaced.)
Good ideas, thanks!
I actually read a lot about how untrustworthy the SIBO tests are. When I brought it up to my gastro she looked at me as if I had stated that the moon was made of cheese. She was very dismissive. I called yesterday and left a message pleading to find some other solution. There's no way I can make it a month to a test (and an unreliable one at that) and the pain is getting worse with each day that passes. I feel like I'm one step away from the emergency room.
I think thus far this seems the most appealing to me. Thanks for the advice!
Oh I know, believe me. Turkey is actually starting to look GOOD after 2+ weeks of nothing but potatoes. I did try chia seeds today and so far they're sitting alright, fingers crossed no reaction from those since they're pretty heavily nutrient dense. (my reactions usually seem to land in the evenings/night for some reason..)
I am having extremely serious complications and within the last few weeks my body won't tolerate ANYTHING other than baked potatoes or white rice with lemon. (my last post here)
I appreciated all the input from my last post and some of it was especially helpful--my gastro does think it sounds like I have Small Intestine Bacteria Overgrowth. The problem is that to do the test for it your system has to be purged of Pepto for at least a month. Which means I can't take it until 2nd week in November. I've been living on about 1 baked potato per day then a giant bowl of white rice for dinner. I'm well aware how dangerous this is and that I need nutrients. I'm scared that in continuing this for a month while waiting for a test I'm going to do serious damage with malnutrition. (And even more disturbing to me is the fact that neither of my doctors seemed too concerned about that.) (And yes--I'm at least taking multivitamins, supplements, all thoroughly researched on allergen content)
I CAN'T HAVE FRUIT AND VEGGIES!! AT. ALL. I'm not looking for specific (Paleo/FODMAP/organic/sulfite free/etc) diet advice because right now I've tried it all except meat and I REACT TO EVERYTHING VIOLENTLY. All fruit, all veggies, all fats, all nuts, corn, soy, dairy, you name it. Potatoes and white rice and THAT'S IT. I'm posting here for easy meat solutions since meat is the only thing I have yet to try. (I admit though I'm even scared to try meat because each time I try something new my reactions keep getting stronger and scarier. I almost ended up calling 911 after trying collard greens the other night. :/ )
I want to try turkey (absolutely hate the taste of fish--makes me gag) and I want to handle/prepare it as little as possible being that I've been veggie for well over a decade, but I would think that anything processed would be sketchy. I've read that Applegate Farms makes good meats, but is that brand safe for Super Sensitives? What specific brands/products do you recommend?
Thanks so much! <3
Wow! thank you for all the information!! All extremely helpful. Now that you mention it, I remember one of my friends telling me about that bacteria/meat allergy article. I'm holding off until I talk to my doc to see what he says on all of it. Thank you so so so much for the info! I'll definitely be bringing it up with my doc tomorrow
Oh boy, the lyme. No, I'm not self diagnosed. My lyme doctor here in Texas diagnosed me. Which, yes, I know diagnosis is mostly based on controversial blood work (Igenex) / mostly clinical presentations, BUT I did get the bulls eye rash...when I was a little girl in the mid 80's and "Lyme didn't exist in Texas" so it was not properly treated (no antibiotics). My doc thinks it lied dormant in my body most my life, then 2 years ago I was attacked by a dog and put on high dose antibiotics (had never been on antibiotics that high dose before) and all hell broke loose. My left arm went numb, left leg went numb, bells palsy, tinnitus, migraines, yadda yadda, I'm sure you know the the myriad of symptoms.
It's been in my body so long I don't think any amount of antibiotics would get rid of it. With chronic lyme the goal of herbal protocols isn't to get rid of the bacteria, it's to beef the immune system up so it can battle the bacteria/keep it suppressed. Which is exactly what the protocol I'm on has managed to do.
The icepick headaches come directly after I eat specific foods and if I don't eat those foods I don't get those headaches, so I seriously doubt they're connected to the Lyme. Though I'm sure you know how sneaky it is, who knows.. :/
I'll talk to my doc about adding meat back in and supplements/probiotics Have you tried any of the Vitamin Shoppe brand supplements? Most of them are gluten, diary, soy, corn, etc etc free.
Thanks for all the feedback, I really appreciate it!
That's a good idea to take them at bedtime.. I'll talk to my doc on Tuesday and get his thoughts on it. Thanks!
Woah, thanks for pointing me in the direction of Small Intestine Bacteria Overgrowth (SIBO). It sounds like that could be what's going on. My main symptom aside from the usual stomach pain, gas, bloating are SEVERE muscle aches. It feels like I have some terminal case of the flu. And with how quickly my body suddenly turned on corn, beans, nuts, etc it would make sense (all within the last month). The only huge problem is that they treat SIBO with antibiotics and I also have Lyme Disease. The antibiotics would likely stir up/anger the lyme (I'm treating-successfully-with herbs, lyme has been nice and quiet for 4 months). Oy, if it isn't one thing..
Unfortunately I'm also one of those that can't tolerate probiotics. They make me so nauseous. :/
Just found out I can use insurance as of Monday, so I made an appointment Tues... thank goodness! I think you're right, it sounds like it could be something more, like what GottaSki mentioned above. Thanks for the input!