Dizzysillyak

I have a freind who's vertigo responds to Allegra. Her doc told her to take it specifically for vertigo. Something about ear drainage and allergies. That was so easy but no one else had told her that. Tc .. D

Hi rachel, The symptoms you listed as reactions to air travel all sound like allergic reactions to me. Are you on the mast cell protocal ? You may be reacting to the chemicals used in planes. Benadryl may be necessary if other h1s don't stop this. I have to eat super healthy meals frequently when flying too. I need the nutrients for the additional stress. I bring salads with dressing and a meat and they've never stopped me. On the seating, can you take the bed and let one of your kids sit and sleep ? Maybe let them alternate. I always fly with wheelchair assistance and request an empty seat next to me if possible. Sometimes I get it but not always. Putting my feet up on the chair next to me helps. You can request this at check- in too. Tc .. D

I was with you when you were discussing how our digestive tracts work to pull fluids away from fiber and how we might assist this process but you lost me when I read what you were eating. Lol. Those foods are void of any nutrition. I tried juicing for 3 months and I felt better at first but never noticed any improvement after that. I've decided if I want juice I'll let someone else do it for me. Whole foods does this. I pulled the fiber out twice like you did but it was too much work for me to stick with it. My body pulls too much fluid out of foods like beans and grains and leaves me severely constipated. I've never thought of it the way you described it tho. Thanks. Is this what you're doing ? What are your symptoms ? I wonder if there are treatments for this. Oh, actually taking magnesium citrate, natural calm, works for me. I took it with meals for awhile but totally forgot about it. I'm going to try it again. The trick with mag citrate is not to get too much. Too much leads to getting the runs. I feel better avoiding difficult to digest foods so I understand why you feel better. In fact I used to eat those foods, mostly bread, and drink Ensure or Boost to alleviate gastric pain. That was before being dx as a celiac tho. Have you tried taking digestive enzymes or eating papaya, mango or pineapple with your meals ? Papaya helps me the most but it's a pain to keep fresh papays in the house. I'm on creon now but it's not the miracle I'd hoped for. And it doesn't work on the dehydration in my digestive tract problem. If you're interested, healthier options I've found include romain lettuce, parsley, cilantro, peeled apples (skins kill me), most fruits, a variety of lightly cooked veggies, nuts and seeds. Most of the dark leafy greens are too difficult for me to digest unless they're cooked. Antihistamines are helping me too but I haven't started h2s yet. I actually had a negative diy pmttt the other day. Kow. I'm trying not to get too excited till I see several of these. And of course I was having a good day or I wouldn't have tried this. It confirms how I've been feeling tho. Sorry for the book. This just me thinking about digestion. Thanks. D

Hi tuesday, I'm mostly on the Wahls diet minus 6 cups of veggies. Imho, she has the best diet "plan" available but we all have different food intolerances and nutritional needs so keep yours in mind. Her info is on the web or you can buy her book. I need this diet, appr 3 mg salt daily, mast cell meds and a few supplements to be upright longer and more functional but I'm still struggling. I'm 57 and I have a long list of diagnosises tho. I wound up on the paleo diet in 2008, after realizing how bad grains and legumes made me feel after I'd been on the gfcfsfcf diet for 3 years. I felt healthy at rest without these but everytime I tried these I felt sluggish. Those gf processed foods always made me feel weird. Fwiw, there are several people, salesmen maybe ; ), promoting their own loose goosey versions of the paleo / caveman diet that allow foods that imho are detrimental to our health. Dr. Cordain started this trend so I consider his opinion the gold standard. I'd pretty much figured out that I needed to eat only these foods before I heard about the paleo diet. Tc .. D

I take klonopin for myoclonus and it's prescribed for me in case I have another seizure. I can't take very much of this drug without becoming a dim witted zombie. Lol. I'm currently taking between 1/4 - 1/2 of a .125 mg at night for sleep. I need more or less based on diet and stress. I also take several types of magnesium but only notice a calming effect from "natural calm". Neither of these helped my dysautonomia. If anything, I need to lay down more if I take too much of these. Mc meds have lessened my oi to the point where I don't feel the overwhelming need to lay down frequently throughout the day. Pots (30 pt hr jump after standing) was keeping me supine most of the day. Fwiw, if you're eating foods you're intolerant too, caffeine esp, you may benefit from taking these out of your diet. I suspect this will help you feel better than drugs. Imho, the paleo / wahls diet / avoiding your intolerances is the best diet plan. Dr wahls has videos on the web. Tc ... D

Hi Batik, I voted but I don't normally participate in polls. I prefer this type info come from the medical community as they can accurately track based on patients exams, tests, etc. I'm not sure how often this happens in the medical community but the capability is there. BTW. I didn't see celiac or gluten sensitivity in your poll and that's very common in both cfs and POTS. tc ... D

I never did well on prescription anti anxiety or depression meds. Finding that I needed to seek out things that make me smile helped. Things like the beach, feeding the birds, window shopping, watching funny movies, talking with freinds on the phone or internet etc. Being a member on health forums with others who understand my illness helps too. I appear to be low on a lot of nutrients inc serotonin and seem to need 100 mg Natural Factors 5 htp at bedtime. Brand made a difference for me. More makes me drowsy and less makes me moody. Theanine is good for anxiety and seizure like jittery feeling but I found over time that it slowed my thinking down too much so I use it sparingly. I'm down to 25 mg at night right now. Chocolate elevates my mood .. ; ) Thanks issie, I'm eager to hear what you learn. I feel better with certain fats like the ones found grass fed lamb, certain wild fish, etc but I have to remove as much as possible. I always chill my bone broths and throw away the fat on top. I'm on a lamb broth kick right now. I also eat egg yolks, fresh ground flax, raw nuts, seeds, etc. I stopped using chia because it's so expensive and I didn't like the flavor. I don't have my gallbladder and I'm low on elastace so my fat digestion is poor. Tc .. D

Hi issie, I'm not watching my fat intake other than to fit into my jeans. Is that a Paleo thing ? I remember seeing fats recommended in the Ketogenic diet but not fats. I just eat what a hunter gatherer would eat. Basically it's anything that can be eaten raw. I don't eat a lot of meat fats because they make me feek sick. I try to stick to raw nuts and seeds but occassionally cave and buy some Sunbutter. I know better because it puts fat on me quicker than anything. Avocados are bad too but not as bad as a cooked fat. I avoid all oils other than evoo and evco too. I'd heard the others weren't good for us but I never did the research. Now you've got me curious .. Tc .. D

I can't handle more than 3 grams a day without feeling sick. I get mine from salting my foods. But occassionally if my bp is down I just let it slowly dissolve in my mouth. tc .. D

I'm sure you'll feel a lot better once you get your digestive symptoms under control. I still have digestive problems from time to time but it's normally self inflicted now and I have a regime I try that normally gets it under control. Things like fresh papaya, boiling ginger root and drinking the water, probiotics or trying a different digestive enzyme. I use charcoal as a last resort because it pulls healthy nutrients too. That's cool that your mother was into healthy eating. Mine was a true southern cook. Think Paula Deen. Lol. I never responded to papaya pills either but eating about 1/4 - 1/2 a cup at each meal for a day or two worked great. I dry the seeds and grate those into my foods too. They taste kinda like pepper. Avoiding raw peppers and onions helps me too but sometime I can't resist putting these in my guacamole. Speaking of tight jeans, avacados put fat on my belly almost as fast as Sunbutter. My life turned around for the better 7 years ago when I first learned how foods affected me. I've learned most of what I know about living a healthy lifestyle from forums like this, my doc and googling. I was laying down most of the time until I started the mc protocal. : ) .. Now I'm just trying to find some balance. Tc ... D

Thanks Corina. It's good to know it wasn't just me. Lol. Tc .. D

I'm new to the mast cell protocal so while my regime, Wal-zyr, Benadryl and Allegra, have substainly reduced my pain I still need 250 mg b6 + magnesium if I want to eat more than 1 tiny square of chocolate. I've been taking b6 and magnesium for a couple of years. It was recommended by the pelvic pain group. But I have an oxalate problem, kidney stones, so thus may be why I need these too. Tc .. D

A healthy paleo / wahls diet, 5htp, theanine and doing something for myself regularly helps me. Tc .. D

Fwiw, I'm surprised that mayo said a positive result to the gluten antibody test implicates celiac disease. My understanding is that this shows your body produces antibodies to gluten but that doesn't mean you're going to have damage to your intestinal villi aka true celiac disease. Only those with the celiac genes are in danger of getting celiac disease / damage to intestines directly related to ingesting gluten. And this damage is repeatable thru gluten exposure. Meaning no gluten for life. Others depending on their genes may have other diseases associated with gluten antibodies. These can be found in theglutenfile. The info on gluten sensitivity has evolved over the last few years so I could be wrong. I count on the folks at gfab and keep tabs on it. Fwiw, finding gf foods has gotten easy over the last few years but we still need to watch out for cross contamination ourselves. I just got cc'd from ciao bella gelato because I was told it was all gf. It's my fault for being so trusting. I didn't need it anyways. Lol .. Tc .. D

You're welcome. In case I threw too much new terminology at you, Dr. Wahls explains this in her videos. Esp her TED 51 minute video. Or any of the books or websites on autism that discuss leaky gut and bio chemical treatments should explain this too. FWIW, I don't know why but I'm actually embarrassed discussing the incompetence I found in the medical community. And from being on the web for the last 7 years, I know I'm not the only patient being treated like this. And then there's all those people I meet in the health food stores who laugh about how useless their doctors were. Hopefully, the more educated and empowered patients become the less we'll tolerate these behavoirs and they'll have to change. Or lose patients. Personally I hope more turn to integrative or function medicine. It would be a shame to spend their careers dolling out meds when they could actually help their patients. Good luck with your functional doctor. tc ... d

Hi Sue, sorry to hear that this was missed 3 years ago. It's happening everywhere tho if that makes you feel any better. That's why the people at GFAB started their website. IMHO, the people who started the forum, Cara, Anne and Al, are experts on all things gluten. They've researched it and posted published info on this for at least 6 years. I found them in 2006 when looking for info on gluten ataxia. In my celiac support group most of us raised our hands when asked if it took years to get a proper diagnosis. I got mine in 2007 after 17 years of being disabled with CFS and the NIH says CFS can be from celiac disease. Here's recent info from GFAB on how gluten sensitivity or celiac disease can be diagnosed without a biopsy. There's more info on page 3. I'm not sure if the link here is your test or not tho. Maybe it's on the 3rd page. I'm not sure if you can find all this info in the glutenfree 101 section as I haven't kept up with all this. Chances are Cara put this there too tho. This quote is half way down and written by Anne. http://www.glutenfreeandbeyond.org/forum/viewtopic.php?t=5991&postdays=0&postorder=asc&start=15 " Wed Oct 17, 2012 6:46 am Post subject: -------------------------------------------------------------------------------- Diana, with a positive TTG and EMA tests some doctors will not bother to biopsy especially if the results are very high. That being said, I would imagine that Mayo, being Mayo, will want to do a biopsy. These articles say highly positive TTG can forgo biopsy http://www.ncbi.nlm.nih.gov/pubmed/22197946 http://www.ncbi.nlm.nih.gov/pubmed/22119616 " FWIW. Many of us celiacs won't just heal from going on the GF diet. That's on gfab too. In my case, it looks like I had gluten damage to other organs. tc .. d

Your approach to this sounds a lot like mine over the last 7 years. Have you had a cdsa ? Comprehensive digestive something (haha). I'll think of this later I'm sure. But if you google cdsa you'll see exactly what it is. Basically, it's a stool test that looks for a list of thing that could be causing your digestive problems or your chronic illness. Things like candida, parasites, missing digestive enzymes, etc. My understanding is that the metamatrix is the best. Have you been tested for sibo and h pylori ? These are traditional tests so they should be easy to get. I love mangos too but papaya works differently than mangos for me. I eat a lot of these when my digestion is off. Sorry to hear you're allergic to pineapple. Dairy could be behind that tho. I'm allergic to dairy and I feel better tummywise from yogurt or kefir. I just get severe shiners and a little gas. Goat milk was even worse. Have you tried making your own coconut kefir with a dairy free probiotic like Metagenics, Country Life or Megaflora ? It's real easy. I've responded well to taking some mast cell treatments tho. I wish I'd started these years ago. The only upside to having paid such close attention to how foods affect me is that I felt mostly healthy at rest and knew what would happen if I ate the wrong food or chemical. Looking back, my diet was very limitted. Since going on the mc protocal, I went a little crazy eating my trigger foods, chocolate, tomatoes, etc. since I'm not reacting to them with pelvic pain. Lol. Now I'm working on adding new cuisines to my diet instead of my trigger foods or non paleo foods. I can already tell, it's not going to be easy without getting a negative reaction tho. For several years I had swelling everyday and it never dawned on me that I needed to stay on allergy meds vs taking Benadryl if the swelling got too bad. Duh ! I wish I'd known about the pelvic pain and fibro / mast cell connection too. I could've avoided years of unnecessary pain. Tc .. D

I JUST figured out that sometimes acidic foods like pineapple, lemons, etc make my teeth and gums hurt for a few days after eating these. I'm avoiding these foods right now and will re-test these when I get the chance. It could be that I just need to rinse my mouth out after eating these. I used to get weird mouth pains in my mouth when I was eating gluten all the time tho. Gluten is just poison to my body ... tc ... d

Welcome. If I were you I'd look for an integrative / functional doctor in your area. This type Doctor will look for root causes of chronic illnesses like diet, parasites, nutritional deficiencies, thyroid irregularities, etc. Mine found what my traditional doctors missed. Things like Hashimoto's, low dhea, low pregnenolone, several nutritional deficiencies, my tendency to over produce gluten antibodies, hyperinsulinemia, etc I just started the mast cell protocal 6 weeks ago and I'm a responder. My oi is there but I'm not forced to lay down most of the day anymore and my energy has improved. : ). We have some great info here on this. I've been mostly couchbound and on disability for 23 years in Jan and between the Wahls diet, supplements my labs or doctor said I needed and now the mast cell protocal I'm feeling better than I have in years. Kow. If you decide to forego the doctor, I'd start with the elimination diet then go to a paleo type diet. Some people don't do well on grains, legumes or chemicals. My dogs didn't do well on grains either. They were on meds for chronic allergies and skin problems until I switched their diets. I suggest trying probiotics or better yet make homemade coconut kefir using a good probiotic. Try eating papaya, mango and pineapple to aid in digestion. Papaya seeds are good too. Or try digestive enzyme supplements or meds. I'm using creon now and it's working well but I'm also a celiac. I also suggest, based on my experience to treat for candida and parasites in case you have these. Tc ... D

Cool. Thanks for pulling all this together even if you're just thinking out loud. It makes sense to me too. tc ... d

Thanks Issie, Sorry to hear you have a heart problem that can lead to edema. I have a freind going through this right now. I looked up gastrocom. http://www.webmd.com...Gastrocrom+Oral I'll have to run this past my doc at some point. She just increased my dosage of Creon, prescription digestive enzyme, and I need to try that first. My labs say I'm low on this. It works GREAT but I needed more. And right now I'm out of it and while I'm taking other digestive enzymes, my digestion is poor. I get my new script by mail now in about a week they said. . It was either that or pay $327 for a 1 month supply. So now isn't a good time to try ask for or try anything new. I was told that I could try the H2s again tho. She knew how they were related to mast cells. My other big digestive problem is that I HAVE to take Magnesium citrate, Natural Calm, everynite in order to have a BM. I'm too constipated otherwise. And that's been going on for several years despite diet changes, etc. I've tried everything. Does anyone know if mast cell disorders can cause dehydration ? I have that all the time and suspect my constipation is related to dehydration. I'm not urinating frequently so I don't think its DI. Unless, fluids are going straight thru me and my bladder is holding onto it. Is any of this related to MC ? I wish my brain was all there. Congrats. I'm thinking mine is probably related to the Theanine or Klonopin I'm taking for myoclonus and insomnia. I'm stuck on what to do here. But I'm using NAC and will try citocoline today too. Caffeine (I'm playing with this again) seems to speed my body up and leave my brain behind. tc ... d

Deleted. Double post.

Hi issie, I keep getting stomach pain from h2s so I haven't tried them again. I'm on Wal-zyr (Walgreens zyrtec) because I read that zyrtec helps the most with swelling and I have that most of the time. Either in my throat or my bottom lip. I'm also sticking with Children's dye free Benadryl because I know that works fir my swelling. Treating the swelling isn't an option if I want to breath. I can't remember right now why I started the Allegra. I "think" Wal-zyr perks me up during the day because it contains corn starch and my reaction to hfcs is extreme hyper activity. I've yet to test corn starch but I just found a gf one the other day. I've been on the go for about 6 weeks now so I haven't had time to learn all the mast cell terminology even. Fwiw tho, being on the go for 6 weeks is a record for me. My brains not in gear tho. I'm working on learning this. I just had to go to ca for a month to dog sit. Now I'm playing catch up. Tc .. D

That's a great idea, issie. I'm glad you pointed that out. I missed that. Thanks. D

Hi batik, It's great to hear that you're pelvic pain is being helped by antihistamines too. Mine's so much better but I'm still having break thru shots of pain. Granted I've put chocolate back into my diet in large quantities. Lol Taking 250 mg Solgar b6 + magnesium (doctor's best) helped this prior to going on the antihistamines and I still need these. I don't know why these work but they're recommended by pelvic pain specialists. Can you tell me which antihstamines are helping you ? sorry if you already said this and i missed it. I'm on Wal-zyr, Allegra and benadryl. Thanks .. D