Jump to content
  • Sign Up


Advanced Members
  • Content Count

  • Joined

  • Last visited

Everything posted by Jean'sBrainonGluten

  1. I get fewer migraines and my allergies and acne are less severe. Also, I can think more clearly.
  2. Hi, If you search through the forums here and online you will see that a substantial number of people, including me, experience mostly neurological symptoms. Here is a link to one of many articles. http://www.sciencedaily.com/releases/2002/04/020424073708.htm I test as negative for celiac and I decided it didn't matter because when I don't eat wheat I can think clearly, more or less for the first time in my life, and I'm 52 (sigh!). If you got an MRI or cat scan see if you can get a copy. Check to see if you have 'nonspecific white matter lesions' I did and it turns out they're from exposure to gluten and can cause symptoms that look like MS or epilepsy. Here's another link. http://www.ajnr.org/...stract/31/5/880 I strongly suggest going gluten free. HOpe this helps and you experience improved symptoms soon. Jean
  3. Sorry about the earlier post - I haven't been on the forum for awhile. I have no idea precisely what is happening with you but I would suggest doing some kind of rotation elimination diet with a food/symptom log to try to get clarity. To start with I seemed to have so many problems that it was hard for me to sort out, like you. Initially I did a three day elimination diet with subsequent food challenges - that didn't five me any information. Later, I did a two week elimination diet followed by several days of challenges. I can't find the particular protocol that I used but here's a brief link that talks about a general plan. http://www.askdrsears.com/html/4/T041800.asp Anyway, I did feel better on the two week elimination phase then started doing challenges - the idea with my particular protocol is that you eat a small amount of the challenge food in the morning, to see if there's a reaction, then a large amount later if there's no reaction. My doctor had me drink a teaspoon of baking soda in a cup of water to help calm any reactions. Well, when I ate wheat I got horribly dizzy and used the baking soda - which seemed to help (I don't know why). Since then I've noted that I do better if I avoid most grains. So, you might try an elimination diet and see what happens. I hope you are able to get some clarity and feel better. Jean
  4. Hi, Actually the neuro symptoms of dizziness and nausea were eventually the most challenging for me. If the blood tests are negative you may still have a different kind of gluten or wheat sensitivity. So two things - you might want to do some web searches on gluten ataxia and neurological symptoms. Also you might try a gluten free diet being careful about issues of cross-contamination. I saw some improvement when I started with gluten free but the real change came when I figured out my toothpaste probably had some gluten. Good Luck!
  5. I do get tremors in my hands that I can see but not feel - see my discussion of scary symptoms and trust in the process, above. It's kind of horrifying that wheat or gluten can cause symptoms this extreme and be so unknown. The saddest case I saw online was in a psychiatric journal - about a 67 year old woman with 'IBS', visual disturbances, white matter lesions, and hallucinations (all on record in later literature for gluten white matter lesions) who was told she had dementia and was just going to get worse until she died. Thank God we at least know what is happening and have hope to get better.
  6. I'm not sure what you mean by not feeling the movement. I got twitching in my legs when I was lying down. I didn't feel it directly but I felt my skin moving against the bedclothes and the bed moving because the twitches were quite strong. What I decided is that some of my symptoms are scary and I wish they would go away faster but I had the MRI and the carotid ultrasound. The MRI showed nonspecific lesions and the ultrasound was normal - nothing desperate except how I feel, so I'm not going to panic there are plenty of people in the medical literature whose symptoms were much worse than mine and who recovered - it just took time - the guy with out and out epileptic seizures took nearly a year and he was about your age even in a person your age it takes several months for gluten damage to the brain to heal, I'm over twice your age so I figure I've got months or years before I'm much better. It isn't what I want, but it is true. in the meantime you can try adding a little more magnesium - I take quite a lot and find it helpful continue with exercise and zealous gluten free eating, check personal care products, meds, cross contamination track your food and other things to see if the symptoms wax and wane and what might be triggering them look at foods that trigger migraines since they may increase brain pressure and could be contributing to the twitching (aged cheese, preserved meats, citrus, beans, check the web) practice self-calming and judicious distraction. Hope this helps
  7. I know you're hurting and sick. You can hope he'll eventually come around but in the meantime could you try something like scratching his back? My husband just really likes to be touched and I found if I got a skin scrubber thing (like for exfoliating the legs or something) and scratch it over his back he's very happy and feels loved and it doesn't tire me out the way scratching or rubbing with my hands does.
  8. People list different times but between 6 and 8 weeks on daily gluten. You should check the web to get a sense of how much you need to eat each day. I think, for example, that one slice a day isn't enough to trigger the response. The thing about not getting tested is that, for me at least, as long as I didn't have a positive diagnosis I felt like I was just a little sensitive and could get away with small amounts of gluten occasionally. I just didn't have the emotional wherewithal to continue to do the extra work it took to eat gluten free at home and at restaurants and other peoples' homes - especially a few relatives who thought it was ridiculous for me to need to eat differently. Sadly, they didn't pay the price for my continuing gluten eating, I did. If you can manage it eating the stuff and getting the test could be worth it. Good luck!
  9. Hi CGally81 You clearly have a lot going on and it may take you awhile to get sorted out. I'm going to take sort of a different approach since I noticed that you've posted similar questions in several areas. With all the things you try it can be helpful to write down what you eat and how you react, because it's easy to forget and not be able to see patterns. First it's important to make sure you are drinking enough water. The usual recommendation is 8 cups a day but I, for example, need 12 -16 so that's something you can look at. The hunger could mean that your body is screaming for nutrients it hasn't been able to absorb - have you been checked for deficiencies and are you taking a good general multivitamin? Vitamin D and the B vitamins are common deficiencies with celiac - maybe you should look at supplementing those in particular. Have you ever been tested for H. pylori? I found that one of my symptoms when I had that was hunger that remitted when I drank water with some baking soda mixed in. I have much less hunger when I eat live culture yogurt so you might try that. People can react to different parts of milk. Active yogurt cultures or lactaid enzyme can digest the lactose if that is what you are sensitive to, cheeses are made using rennin which digests milk protein, so you might try those as alternatives. You could also try smaller more frequent meals. I have sometimes gotten hungry when I ate too much - like it overstimulated my stomach - or too many vegetables, though that doesn't sound like your problem. Finally, you mention being diagnosed as autistic and I seem to recall that there are often strong food preferences associated with that. You might benefit from talking to a good nutritionist, but I'm not sure how you would find someone helpful. Hope this helps.
  10. So to summarize and add to the suggestions I see here Hard boiled eggs, wraps using lettuce (or I saw one recipe for a spinach egg tortilla) to hold edibles like a sandwich or pita individual serving size cans of fruits (if you can tolerate them) You could make a preserve like fruit compote....? homemade jerky or other dried meat bean salads cheese if you tolerate it. Since you list potato you could make lasagna with potato subbing for the noodles, then put in in individual size containers to carry with you. It means baking on the weekend but so do many of these ideas Good Luck!
  11. It's a pain but for the time being I would just wear the gloves while making the sandwich. I've reached the point where I reflexively wipe down surfaces in the whole kitchen when a family member makes toast and I'm not going to cook gluten pasta anymore because I was reacting to that. I'm think of wearing a mask while dusting, for that matter. It's possible that your body is under special stress and may calm down later but in the meantime it's pretty clearly telling you what you need. Hope this helps.
  12. Hi I'm not sure why the leg lifts help me. I am careful not to do too many - less than 15 and only a couple stretches. So here's a technical discussion on why I think it's a muscle/brain stimulation thing.... Twenty eight (?) years ago I was a lab tech for a psychologist studying whether exercise helped rats recover from brain trauma, which it clearly did. Here are some references http://www.scientistlive.com/European-Scie...recovery/23520/ http://www.pmrjournal.org/article/S1934-14...0382-7/abstract http://www.webmd.com/stroke/news/20041019/...stroke-recovery I just found those articles but I did the mild exercise based on my lab tech experiences and some reading I did years ago on recovery from coma - it was more or less a theory of mine that mild activity could stimulate the motor neurons and help rehabilitate the brain. The idea is that gluten is causing me brain damage and the mild exercise helps overcome the damage. It wouldn't be effective without the gluten free diet stopping the ongoing damage. The researcher Hadjivassiliou, srthom21's article author, has actually opened a Brain Ataxia center in England, but I'm unable to find recent publications by him. Anyway, several of the papers on different neuro symptoms and their correlation with celiac are written by him. For muscle cramps you might look at potassium and magnesium supplementation. Hope this is helpful.
  13. Hi, I am a little confused by your post but since you mention that you feel confused I'm going to take that as a symptom and do a symptom list from what I see in your post confusion fatigue mild constipation stomachache weight loss bad breath ?hair trouble? - your name The symptoms of celiac and gluten intolerance are really varied so you 'could' have one of those. The gluten free diet is challenging - to stay on it, to be assertive in social and restaurant situations. Most people don't have the motivation to stick with it unless they feel really bad. I can't tell from your post if you don't feel that bad or do feel really bad, but come from a family where no one complains about health problems. You're the only one who can figure that out. I have noticed that going gluten free did mean that I reacted unexpectedly strongly to being glutened. My guess is that when you have chronic exposure your body is making all kinds of stress adjustments to keep you functioning so you aren't aware of the full force of your reaction until you aren't exposed regularly and the stress adjustments are shut down. That bad reaction after being gluten free for awhile probably means you have some kind of sensitivity. My guess is that you don't have enough overt symptoms to be able to convince an average doctor to do lab work. This is an advantage because you can just try the gluten free diet for yourself but a disadvantage long term if the diagnosis would help motivate you to stay on the diet after you start to feel better. You're the best judge of that. So you can do a gluten free diet to see if you start to feel better. I would advise you to be careful about cross contamination and the way grain derivatives are often used for flavor enhancers and texturizers. If you think you have multiple allergies you might try an elimination diet like that at http://www.drcranton.com/elimination_diet.htm I actually found that I was able to discern sensitivities after two weeks on the elimination portion, followed by reintroducing large quantities of suspected allergens. The doctor I was seeing then advised me to drink baking soda and water if I started to have a reaction to a food. Scientifically I cant' think why this would work, and it certainly doesn't allow me to eat gluten without suffering consequences, but it did seem to help when I was doing the challenge. If you have grass allergies you might look into going completely grain free or following the Specific Carbohydrate diet. At any rate it is true that for many people after they've been gluten free for several months they are less sensitive to other nongluten foods and can reintroduce dairy and so on. For the constipation you might try drinking ginger tea every day. If you have more trouble with this there are other measures I can suggest but yours sounds like a relatively mild case and ginger tea and maybe magnesium supplements should be enough to help with that. Whatever you decide to do I urge you to keep checking in iwth this forum and other celiac information since more is being learned all the time. Good Luck!
  14. If the lab results come back negative please don't get discouraged. You could still be reacting to gluten or wheat. Wheat has about 500 proteins in it and gluten is an enormous molecule. The test they use look only at whether you are reacting enough to a small part of the gluten molecule to damage your gut. You could have wheat allergy or gluten sensitivity or even (like me)grain allergy). You might look at the youtube videos I list below and try a gluten free diet (paying lots of attention to the issues of cross contamination and the way grain derivatives are used for flavoring/texture in many foods. Good Luck! 9minutes from Gluten Intolerance Group long - from the William Warren Celiac center in San Diego - I found the first 30 minutes and last 5 minutes (Q&A) to be most helpful.
  15. Hi Kayla, I am so sorry you are suffering this way. I agree with the recommendations of others. From my perspective it sounds like you're showing symptoms of neuro involvement *unexplained all-day headaches (back base of my neck a lot) *fuzzy warm foggy feeling in my head that generally clouds my ability to remain focused and productive *irritability, depression, low motivation (fed up with feeling like I am operating at 1/2 of my ability) *Flushed or warm feelings in my face and ears (often after eating fried or breaded food, which I don't do often) *I take Adderall to get me alert enough to get through the day *I notice I feel especially horrible after eating pizza for some reason. And possibly hormonal/adrenal involvement *I take fiber to relieve constipation, which is a constant problem for me/( except on weekends when I'm off work and will go to the bathroom 3 or 4 times) *Unexplained hair loss (I started with a lot of thick, long hair) and have probably lost 1/3 of it, the amount of hair I lose during a shower will plug the drain.... In addition to the supplementation and testing others suggest I have suggestions. 1. For the neuro issues - consider looking at standard migraine trigger foods like onion, garlic, preserved meats, citrus, aged cheese - this could explain why pizza is so bad. Check any meds you are taking in a drug reference to see if they are contra -indicated for use with MAO inhibitors. The worst headache in my life was triggered in part by taking Cipro for a bladder infection - unfortunately all Cipro related drugs ( and several others ) are know to cause swelling in the brain, which obviously makes them bad in your situation. Also, consider using an ice pack when you have a headache - put it on the base of your skull for 5 minutes or so (wrapped in a towel) then move it to different parts of the head. This helps me when no medications touch the headache. Do you hear the pulse in your head during these headaches? IF not don't worry but if so, it's called pulsatile tinnitus. I have that and so try to avoid tylenol and basically every other over-the-counter pain med since they seem to make it worse. The ice helps. Eventually I found that seeing a good chiropracter wouldn't make the headaches disappear but kept them from getting worse - something to consider. 2. Be really aware of cross contamination and the way hidden wheat derivatives are often used for flavor or texture. I found that simply going wheat free wasn't nearly enough. 3. Do you any pollen allergies? Before going wheat free I had tons off pollen allergies, especially to grasses. If you have these you might consider going completely grain free. It's a pain but it made a huge difference for me. If you decide to do this I can give you suggestions for some coping or you can look at information for the Specific Carbohydrate diet (though that is even more restrictive). 4. For the constipation, it can be a symptom of thyroid insufficiency and also related to migraines. For me even if my migraines are under control and my thyroid and adrenal numbers look good I have to work on this issue so you might try some of the things that work for me. Ginger Tea every morning, live culture yogurt and an acidophilus tablet every day, Pilates core exercises at least 5 days a week ( the Brook Siler book was helpful to me), lots of water, and time - even with all this my gut is slow and I find that if I don't give myself time in the morning to let my gut work and have a BM then I get in trouble - that could explain why you have the work/weekend pattern. 5. Even with the negative lab work you could have gluten intolerance, which can't be detected with current lab work, or wheat or grain allergy, which also is variable in whether it can be detected. There are two youtube videos that I found helpful in understanding the differences 9minutes from Gluten Intolerance Group long - from the William Warren Celiac center in San Diego - I found the first 30 minutes and last 5 minutes (Q&A) to be most helpful. Good Luck and keep us posted!
  16. I can relate to the rash from suntan lotion and the dizziness in Subway. I don't shop in stores with bakeries unless I have absolutely no other choice. Medical doctors can be so frustrating and most of them know zilch about celiac, much less gluten sensitivity. The issue of testing depends on you. I'll tell you my story and then ask some questions. I had numerous allergies and thyroid problems, plus my mom and uncle both died of bowel cancer. I eventually developed fibromyalgia and was taking vitamin B12 and D3. The doctor (the only really smart doctor I've ever had, who has since retired at 86 - sigh) put me on an elimination diet and I reacted strongly to wheat, which shocked me. So I did the wheat free diet and my headaches, allergies, and pain got better. I found that I could occasionally have some wheat without retriggering everything (I thought) and I never did celiac testing because I didn't want to eat enough for the challenge since I knew I would hurt. Well I have family members who thought I was just being a diva and really gave me a hard time about not eating their wheat-in-everything cooking and I started doubting myself. I was also eating out and thinking grilled meats and salads with only a few bread crumbs were okay. And then......I started to feel worse and worse, I was struggling with dizziness and headaches,,,,,I finally got a monster headache and throbbing pain and throbbing pulsatile tinnitus and dizziness, stumbling, nausea, light sensitivity, sound sensitivity, eyes wouldn't focus, losing peripheral vision, plus seizure like leg jerking when I tried to go to sleep. They ordered a brain MRI and told me I had no tumor, but small nonspecific white matter lesions that were probably microvascular ischemic changes - doctorese for heading for a stroke. Fortunately they did a carotid ultrasound and even though I'm 51 there was no evidence at all of arterial blockage, which meant they were wrong with the idea of classic prestroke.... I remembered I had seen something about gluten affecting the brain and low and behold several online brain MRIs of patients eventually diagnosed with celiac looked like my MRI. I have what they call celiac white matter lesions, even though I test negative on the IgA and IgG tests (so the doctor says though he hasn't sent me the precise results). People with these spots have shown symptoms that mimic epilepsy, MS, dementia, and Lou Gehrig's disease but most of them seem to get better after a year or two on a strict gluten free diet. I'm getting better with gluten free eating but it will be a long haul. I had a chance to improve my health when I got the results of the elimination diet but I pretty much blew it and made myself really, really sick. Years ago when I got the results and started the diet I learned a few things about gluten but I didn't keep learning - I wanted to move on with my life, or I might have learned that most grilled meats in restaurants are dusted with flour to avoid sticking, and even a few crouton crumbs are too many. I didn't understand cross contamination and I didn't trust my own body's reactions enough to stay vigilant and keep learning. Here are my questions - do you need a diagnosis to be able to be diligent and stay assertive for yourself, especially even after you start feeling better? If, in your heart, you know you need a diagnosis then push, push push until you get it. You should know that the stool and saliva tests are not well regarded by mainstream doctors so if you want their sympathy and blessing you 'll have to go through the gluten challenge and classic test thing. Even a genetic test showing risk genes won't convince the hard core guys - they've all been trained to believe celiac is very rare (1:800). And if you do those tests and instead have wheat allergy or gluten intolerance the tests still won't show you those. Here is a lengthy video that explains some of the differences among wheat allergy, gluten intolerance, and celiac There is also a shorter and lower tech video from the Gluten Intolerance Group that explains many of the critical issues. Sorry so lengthy.... You have to decide for yourself what you need to be able to stay diligent and keep yourself healthy. Hope that is helpful.
  17. That's probably too long for a reaction from something she didn't completely digest. If she is healing with the gluten free diet her need for supplements may be changing. Can she reduce or cut in half the supplements - maybe trying one at a time depending on symptoms - to see if that could be her problem? You or she could do a search combining each supplement with the symptoms she's having and she if she's overdosing. Hope this helps.
  18. Hard boiled eggs and hard cheeses are pretty portable. There are gluten free potato chips that would be portable and satisfy the snack craving. There are recipes for making your own jerky at home in your oven so then you could have portable, snackable meat for yourself. You may find that as your body heals you can try to reintroduce foods but that's probably a year off. If you can list exactly what you can eat I would be happy to try to work on ideas with you and I expect others might join in. Hope this helps.
  19. I still want to urge you to consider that you have some kind of bowel blockage or ineffective muscular activity for clearance. Here is a site that gives the symptoms. http://www.webmd.com/digestive-disorders/t...uction-symptoms I have had nearly all the symptoms plus chills and basically the only way I avoid them is to do the daily acidophilus (try pills if you are lactose intolerant), ginger tea, and Pilates. I forgot to mentions as well that I take nearly 4 grams a day of Magnesium Malate. Since you sound so impacted you might need to take a stool softener like dulcolax to feel better. Don't read the following if bowel stuff grosses you out. What happens to me is that I'm slow for too long I get more and more stuff piling up inside and drying out so it can't be moved by my muscles by themselves. The only thing that has worked is lots of milk of magnesia, dulcolax and even ex lax to deal with the immediate crisis. The thing is that these are strong meds so you should start out with small doses and drink plenty of water. The times I've had crises it has taken a few hours and more than a few doses of these things to get results. After the crisis is over you may be like me and need the above stuff. I discovered that part of why eating gluten worked for me was that it gave me diarrhea and kept the blockage from getting so severe. Sorry to be so graphic but this is actually pretty dangerous if you let it go too long. Hope you feel better soon.
  20. Not to be gross but if you're only 'going' every couple days you probably could benefit from taking magnesium malate and drinking a some ginger tea to get more regular. Don't overdo either but the bloating was my constant companion until I started working on the constipation, even after gluten free. I still have to drink ginger tea, do Pilates exercises, eat, yogurt, and take magnesium malate every day (plus drink lots of water) to not have a problem. I think for some of us the gluten is just one of several things going on. Hope this helps.
  21. The best 'restaurant card' I have seen is included in the book by Elizabeth Hasselback. I know she's controversial but her card mentions the possibility of cross contaminations and the need to cook with clean utensils and not use flavorings with grain derivatives. If you don't want to get the book I'd suggest looking at the card and copying the wording. Everything we can do to communicate and teach about this is helpful. About the sarcastic family member...I'm sure you've touched a nerve for lots of people. My stepmother doesn't get the gluten free diet or my neuro symptoms at all and dealing with her turns me into a messy bundle of hurt, anger, self-pity, resentment. The only thing I can say is that it's always easy to underestimate other people's pain. The Hasselback book and others have good discussions about things to say to people, but in the end they can't feel your pain and they can't make you well. I still don't like having to be so responsible and organized about bringing my own food and being assertive to restaurant staff who have no clue. The last time I was glutened the waiter made a big deal about understanding my gluten allergy and a companion's lactose allergy and we both got zapped. I hate that I can't take a break from working the gluten free diet because my gluten reactions don't take a break. Hope you feel better soon.
  22. The thing with neuro symptoms is that they reflect damage to the brain and the papers I've looked at imply that it takes about a year gluten-free to clear up, but you have to be really scrupulous about cross contamination and not eating grain derivatives in flavorings. You should start to see improvement soon, depending on your age (younger people heal faster). Make sure you are getting a good gluten free overall vitamin supplement and specific supplementation with B vitamins or D if tests show you are low. Several other things also have helped me avoiding common migraine trigger foods like onions, aged cheeses, citrus, pickled foods, ...even limiting gluten free preserved meats - there are good websites because migraines cause swelling in the brain icing my head when I have even a small headache sometimes a heating pad on my lower back helps a little doing calf and other leg exercises ( standing on tip toes - up/down repeat several times and then do a slow stretch of the calf and achilles area) right before bed and, again, avoiding antihistamines and opioids ( hydrocodone and tramadol are the ones I had tried for fibro pain, tramadol is related to opioids) Hope you feel beter soon!
  23. Sorry you feel so bad - I hope you are better soon. It's almost like we should freeze some meals ahead for ourselves so we have something to eat if we get sick like this and especially need, but don't want to make, healing foods. Good luck!
  • Create New...