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About Jean'sBrainonGluten

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    Central Coast California
  1. Jean'sBrainonGluten

    Since Going Gluten Free....

    I get fewer migraines and my allergies and acne are less severe. Also, I can think more clearly.
  2. Jean'sBrainonGluten

    Time To Take This Seriously

    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. Jean'sBrainonGluten

    Possible Celiac Disease?

    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. Jean'sBrainonGluten

    Muscle Twitching

    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. Jean'sBrainonGluten

    Muscle Twitching

    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. Jean'sBrainonGluten


  8. Jean'sBrainonGluten


    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.
  9. Jean'sBrainonGluten

    Should I Or Shouldn't I?

    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!
  10. Jean'sBrainonGluten

    Good Protein Sources?

    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.
  11. Jean'sBrainonGluten

    Celiac And Major Allergies, What Do I Eat?

    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!
  12. Jean'sBrainonGluten

    Talk About Being Sensitive.

    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.
  13. Jean'sBrainonGluten

    Muscle Twitching

    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.
  14. Jean'sBrainonGluten

    Small Stools, A Symptom? Help

    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!