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  1. Scared? yes, certainly.. I am in the last semester of my PhD and my husband has gluten intolerance - He is a PhD student too, but is taking this semester off - I dont have that chance - I have to help him recover as soon as possible and also I have to finish my program and find a job so that I can pay the school bills and his medical bills.... I have been delaying everything for about 8 months.. what to do what to do, continue..yes I am scared, actually, I am overloaded with many many things.. so, please dont feel alone - I starting to check this page to learn about celiac and teach my husband - he gets scared when he reads - we learned a lot, and still learning - on the other hand, I realized as time passed, I need some support too, so, while I was cooking, writing my chapters, entering my data all those things, I often checked this page, still checking... I feel like I am not alone, it is a good feeling, it is not solving the things for me, but helps me stay strong - still scared though!
  2. nope! it did not go like that - the jerking is back. his legs and arms jerk constantly when he tries to fall in sleep - it is frustrating since we know that he is 100% gluten free. shampoo, food, drinks...everything. it might be RLS (restless leg syndrom) or something else...we are working on it ) We are seeing a new neurologist, he is running bunch of tests, so, lets see.
  3. Hi all, I dont know what it is, RLS or something else - but my husband has similar problems, his legs and arms jerks, he says he feels like somebody is tickling him so he has to move his legs and arms. when he tries to fall in sleep, the sympthoms get worse. We stay up all night waiting them to go away, every time he tries to go into sleep, his body shakes intensely and legs and arms jerk. his previous neurologist gave him antidepressant since he did not think that my husband has any neurological problem - but I know that my husband is not depressed. We are thinking now, the antidepressant (lepraxo) is making the sympthoms worse. Also, one day we went to ER for his tiredness, at that day, they gave him a sedative, after we came home, his body was shaking so badly that I had to take him back to the ER...So obviously, antidepressants are just making this thing worse. Anyway, now we are seeing a new neurologist, he is running bunch of other tests (MRI, EEG, etc) and also checking many things in his blood (zink, calcium, vitamin D, etc.). He even referred us to a new GI specialist to confirm that my husband has celiac. I think we are in good hands, hopefully, we will figure this thing out. My husband discovered that if he rests (not sleep) without doing anything, just laying on the floor, watching fishes and meditating he has less sympthoms - they come less frequently with less intensity.
  4. Hi Ada - swelcome! Playing safe with limited variety was important for my husband. We worried about the variety too but every time he tried something, pain was there. At the beginning we thought we could do this diet, but as time passed we learned that he had to avoid milk/cheese/yogurt, soy, red meat, egg, nightshades...etc. since his intestines were sensitive. So, I tried to create new recipes with only few ingredients. now, he likes "quinva" and "rice pasta" and never has any pain after eating those. I believe, when he gets better, variety will be there!
  5. My husband has this shaking going on too. His body jerks intensely (legs and arms) - he wakes up in the middle of the night and 5-7 second long shaking continues for about 2 hours , it becomes worse when he tries to fall in sleep. recently, it started to happen in day time.. this seems to be related with peripheral neuropathy, his neurologist did MRI and requested other tests.. I dont think he gets gluten in his diet, I cook everything so I am very sure. He is taking Lexapro (about 10 days) I think lexapro might be worsening the sympthoms but I am not sure. When he calms his body and relaxes, the sympthoms gets milder.
  6. Thanks for all. We saw his neurolojist this tuesday. It seems like the relaxation medicine that doctor gave him at the ER made his muscle spasms very intense..As its effect dissapeared he felt better - since tuesday he has no muscle spasms. I hope it will go like that.
  7. My husband cannot have corn. Also, some vitamin pills are covered/coated with wheat. so some might be covered with corn perhaps.. if it is not stated as an ingredient, it is better to check with the companies.
  8. Hi, I dont know anything about blood cells - I am not celiac either. My husband has gluten intolerance and newly diagnosed. If you have gluten problem, the pain must be too much and not knowing what is wrong must be a terrible feeling.. I guess being real gluten free can be a good idea. My husband got much better, he almost has no stomach or intestine pain - But he is not only gluten free but also soy free, milk products free - processed food free - nuts free -egg free - yeast free - red meat free - corn/orange/tangerine free - raw vegetables free - nightshades free - butter/margarine free (did I forget anything?). This is a kind of disease that I guess progress is slow and requires patience. After being free of all those things, still it is not done, he knows and tries to help his body to recover by also being psychologically strong. I hope you get better soon and enjoy it.
  9. Hi, I've just saw your post. we used "pilgrims pride 100% natural chicken" for the last 2 months. At the back of the package it says "Gluten Free" and also lists natural chicken broth ingredients as: chicken broth, salt, carrageenan". My husband was not feeling well for the last two weeks - we checked all the food again and again - We dont know what carrageenan is, so to be on the safe side, we eat fish instead of chicken now, he has no stomach/intestine pain.
  10. Hi Rinne, Like everybody else, we had hard time in diagnosing him with gluten intolarence..First they said it was acid-reflux --a year later they said it is IBS -- two months later we ordered a lab work for celiac disease, finally, stool test from Enterolab (in Dallas) came positive. so since june15, we know he has gluten intolerance and staying gluten free. His stomach and intestine pain is almost gone, the gluten-free diet helped him a lot. pins and needles and floaters in his eyes are occuring less frequently, with lower intensity.. His B12 was in the healthy range, closer to the lower level. B12 293 pg/mL (ref range 157-1059) but due to tiredness, the GI specialist gave him a B12 shot 5 weeks ago, and a week ago he got another shot. as far as we know he doesn't have a lyme disease. The major things, now, he is having are muscle spasms-jerking, light headedness, and fatique. this morning we will go see his doctor.
  11. My husband has gluten intolerance. he was diagnosed in july, I think he has been gluten free since the beginning of August.. I did all the cooking at the beginning. He knows how to cook but he was frustrated with the disease and was getting tired so easily at the beginning due to vitamin malabsorbtion so he couldn't fix anything...later he got better and managed his own diet properly....but now he is extremely dissapointed and tired again....so again, I take care of all he meals. Did you have a specific question? there are too many things to say..
  12. Hi all, Do you all have jerky movements - muscle spasms? Tonight we have been to the emergency room two times. first, I took my husband there because he was feeling very tired, was having hard time in walking, he had very intense muscle spasms - jerking movements in his legs and arms - they just came and went...At the emergency room they gave him IV, checked his blood level, and gave a medicine to relax him.. they couldn't find anything... we came home.. but after a while he had muscle spasms again - but not like minor ones that he usually has, these were intense jerky movements.. so I took him back again.. they did a CAT scan, everything looked normal...they suggested us to see a neurologist... He has been gluten free since july (4 months) He is very scared and I dont know what to do..
  13. the following soup is our life saver. My husband has gluten intolerence, 5 months ago diagnosed - so I always keep this in our refrigerator for emergency / very good for breakfast. All you need is: fresh zuccines, potatos, carrots brown rice (we use mahatma) Chop all the vegetables (or use the blender), mix with water and steamed brown rice - add salt and let it boil for a while. If your stomach/intestines can handle add basels, maybe chicken pieces...
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