Yolaclover Posted October 4, 2011 Report Share Posted October 4, 2011 Hi friends, I was having some password issues and they have been resolved Really missed everyone, have kept updated by reading here but was unable to post. I returned home from Bulgaria on September 2nd and I started a new job! I was having some issues with florinef. I cut my .1mg dose to .50 or is it.050? that helped for August, but in September I started getting very, very painful headaches, they felt more like a head infection than a headache, I took all sorts of meds when I thought, why not cut the florinef again. Dr. said to try every other day but I could not take it! So I tried 1/4 of a pill in the am and pm. It has been working. I'm not 100% though the headaches are reduced drastically. I am now doing just that but I sometimes get very lightheaded, have lots of twitching muscles, some weird spells at night , pins and needles kinds of things all over my body and my personal favorite: head pressure and weird disturbing head and neck stiffness and pain, like I got beat in the back of the head by a baseball bat. love it!at one point I was off of florinef for like, 5 days. I felt bad and my BP got low, 80's over 50's. It made me think, "what is going to happen to me, will I be sick for the rest of my life, do I really have POTs?" I have had a TTT but I never did the whole autonomic lab thing so I want to go somewhere in NYC area but not sure where. Julian Stewart is all about peds. NYU is all about familial dysautonomia. I have to do something though. There are so many tests here that people write about that I have never had!I have also been dealing with my possible celiac disease, saw the GI and had another blood test positive for celiac, had an endoscopy 2 weeks ago. Waiting on results. I also have to have a blood test for genetic Celiac and a stool sample. Would love some ideas of what to do next. Wanted to ask if anyone had been to the Columbia Pres. lab and if they do the full battery of tests. thanks guys! Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted October 5, 2011 Report Share Posted October 5, 2011 Hi ... It's possible that all of your symptoms are related to gluten, celiac disease and the malnutritioncaused by this esp since you have a positive lab result already. If you go to one of the gluten message boards,you'll see people talking about the wide variety of symptoms that resolved when they eliminated gluten.They may or may not talk specifically about dysautonomia tho. Most people just think they're tired and needto sit or lay down a lot. Or their heart races from time to time, etc .. you get the picture .. I ran into this at my celiac support group when I started talking about my problems walkingversus my diagnosis of ataxia. Many of them had problems walking, etc but had just learned to deal with it. And never knew what it was called. Same goes for the myoclonus I have.From what I've heard, either their doctors told them they couldn't find a cause or a relative did this too so it runs in the family. So on and so forth .. I actually have a relative who was told by her doctor to take imodium so that she can eat wheat .. lol .. She didn't want to hear from me that celiac disease is genetic ... All because I'm not her doctor .. It's sad when you think about what we've learned to live with when a simple diet change could've fixed it.And for some reason, even tho celiac disease causes malabsorption, most docs will not order comprehensive nutritional testing. An integrative or functional doctor will order these. Or we actuallyhave a lab here where you can have this done without a doctor.s prescrition.I could be mistaken, but it seems to me that even those who go to a special dysautonomia clinic aren't given any more treatment options than those of us who didn't. What they have is a clear definition of their dysautonomia at the time that they were at that clinic. Fwiw. Lab results vary so what the docs there may have seen may not be a true picture. I'm not sure if this applies to aldosterone, vaspressin, etc tho. But I have had a normal 3 min test for oi even tho most of the time these are positive. And my bp fluctuates at times too. It's been my experience that certain tests are more accurate than others ..Tc .. D Quote Link to comment Share on other sites More sharing options...
lieze Posted October 5, 2011 Report Share Posted October 5, 2011 I missed you too thanks for the update. Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted October 5, 2011 Author Report Share Posted October 5, 2011 Hi Lieze, I've been reading your posts, how are the kids and how are you? How is everything with your family and husband? I would love to know how you are.xooxooxC Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted October 5, 2011 Author Report Share Posted October 5, 2011 Hi D Yes, the gluten neuro connection is very interesting, when all of this started I was an extremely healthy person with low blood pressure (I never had any low BP symptoms though, even through 2 pregnancies). Then one day I had a bagel and a coffee at work and bam!!! Massive head pressure and presyncope. It was so scary. 6 Months later I was diagnosed with POTS (I was still eating gluten, more in fact because carbs and pasta were my fave food) and even on 3 X per day 10mg of midodrine my BP reached a staggering 90/60 (and that dropped way low when I stayed sedentary or slept. Florinef gave me some relief but I was unable to go tandem with the midodrine, BP got too high.It was when I'd been diagnosed with POTs for about 16 months that I told my doctor, "you have to keep testing me because I still feel really bad, I need to know why I'm like this." He did more bloods and the celiac blood test was +, a strong +, so I was referred to Dr. Batash, NYU GI. His bloodwork once again showed an even stronger positive for celiac. I am waiting on the results of the biopsy, he said he got lots of samples.I still suffer from that tightening or swelling of something in my head...my cerebellum? I wonder if what I ate had gluten, I'm still not being as diligent as I ought to when it comes to eating gluten free. I have given up so many foods sometimes I just don't want to check if I think something is safe and usually I'm wrong. I guess I'm just waiting for it to be official. My lightheadedness and head pressure, is that gluten ataxia? I totally have neuropathy, pins, needles, horrible pain in my feet sometimes. Like something is broken.When i tried to stop the florinef my symptoms came back. My BP dropped, does that mean it's not celiac or just my body's reaction to stopping florinef? When someone eats gluten is the adverse effect immediate or does it take a certain amount of time?Sorry so many QI do have a book about celiac, I guess it's not enough info xoC Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted October 5, 2011 Report Share Posted October 5, 2011 Hi .. From what i've seen no one knows which symptoms they're having are from gluten neuro damage or celiacor nutritional deficiencies from malnutrition. The scenario I've seen is that the patient is advised to give up all gluten permanenty and dairy For 6 weeks, I think. The villi are where we produce lactaid so lactose intolerance is considered a symptom of celiac disease when present. I tried adding dairy back in many times but I.m allergic to it and apparently that doesn't go away ...If I were you tho, I'd get as many nutrient levels tested as you can afford. Mine showed that I was low on d,e,b12, chromium, magnesium.. Oh and hormonal testing may be needed too. If you see an integrative doc, they will also test you for parasites, candida and dysbiosis. If you're gut has significant damage, mine did, then the bad guys will have moved in .. Hope this isn't tmi.I wouldn't give up your meds that are helping you until your body has healed some. And then, only if you're sure.I gave up klonopin ama so I ignored my doc .. But that was when I was seeing a traditional doc who wasn'tup on healing ..From what i've see there isn't a normal response time or physical response to eating gluten despite what some in the medical community say. The idea that you have to digestive symptoms is out of date. Theglutenfile, google this or find link at gfab, has quotes from doctors who are up on this .. I know a celiac who only gets moody / obnoxious after he's eaten too much gluten for a few days or weeks. I know someone who gets RA symptoms the day after. Another who only gets the rash ... Etc ..I get myoclonus and insomnia that night. I used to get facial twitching for 3 weeks afterwards but thankfully I don't now. Kow .. I think gluten was causing my ataxia, weak wobbly legs and falling into walls, etc, because I'm a celiac with the dq2 gene and we're known for this. I also responded positively after being on the GF diet for one year. Which is how long Dr. Hadjivassilou (sp?) says it takes. And it hasn't come back. kow ... I'm pretty sure this is how gluten ataxia is diagnosed. I'm not sure about the head pressure .. Taking fish oil, avoiding too much salt and no caffeine helps me.www.glutenfreeandbeyond.org has more info .. Tc .. D Quote Link to comment Share on other sites More sharing options...
Rachel Posted October 6, 2011 Report Share Posted October 6, 2011 Hi! I just want to say welcome back. I'm glad you're able to get on the forum again.I hope that the tests you're having will give clear direction to your doctors.Rachel Quote Link to comment Share on other sites More sharing options...
lieze Posted October 6, 2011 Report Share Posted October 6, 2011 I'm okay-holding steady at 91 pounds.I'm going to be thankful for that and hope I can very slowly work my way up to 100.We just bought a house.Master bedroom is on the first floor.Should be moving in approx 2 weeks.Mom and Dad have let up a bit-I heard my mom saying she guessed she was going to have to lower her expectations-yeah!!! That's real progress.Just taking one day at a time and hoping for the best. Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted October 6, 2011 Author Report Share Posted October 6, 2011 Hi Rachel!! thank you Lieze, I can totally see from your posts that things seem a bit better for you and i'm so, so happy. That is so nice about your parents letting up a bit, do you think they understand how sick you truly are now? How are the kids? Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 6, 2011 Report Share Posted October 6, 2011 One of the things Dr. Weimer was suspicious of was Celiac when I presented with Small Fiber Neuropathy. He tested for it, but I was negative. Seems to be a strong correlation for some people though. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted October 6, 2011 Report Share Posted October 6, 2011 One of the things Dr. Weimer was suspicious of was Celiac when I presented with Small Fiber Neuropathy. He tested for it, but I was negative. Seems to be a strong correlation for some people though.Hi naomi, You may want to look at www.glutenfreeandbeyond.org to see how accurate these tests are. Imho, the people who run that site are experts at understanding these tests .. I never took thetime to understand this as well as Cara, Anne, and Al at gfab have. I have leaky gut, not just glutensensitivity so I've had to research that too. And I was already gf .. Fwiw .. In our celiac support group mtg recently, we were just discussing how many people tested negative at first.tc .. D Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted October 6, 2011 Author Report Share Posted October 6, 2011 Hopefully i will be seeing Dr. weimer soon, I'm just waiting for them to call with an appt. for me Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted October 7, 2011 Author Report Share Posted October 7, 2011 Here is my photo Quote Link to comment Share on other sites More sharing options...
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