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Aunt Poppy

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About Aunt Poppy

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  1. Are all Coppertone sunscreens gluten free regardless of SPF and whether it is a lotion or spray?
  2. You and I could be twins as far as symptoms go. I too have vision problems-the outside of my eye becomes blurry. I have myclonus (jerks of the hands, legs, diaphragm and one time the whole middle section of my body. I also have ataxia (trouble walking) sometimes. It is not bad, but it is sometimes there. Along with all of that is horrible anxiety attacks, weakness and generally feeling like heck sometimes. I was diagnosed with IBS and gluten sensitivity after a horrible intestinal upset due to too many antibiotics. Both of my doctors say that with Celiac or any other kind of severe inflamation of the colon, the nerve endings are extremely sensitive and once the intestines heal, the symptoms should go away. To heal, you need to be careful what you eat. No gluten of course, and things that have helped me are sticking with potato, rice, turkey, chicken (not processed), fish, all natural applesauce, green beans, canned spinich, banana (I eat a lot of these), baby food (some are not bad: Rice and applesauce for one. I know it sounds awful, but a delicate diet for a while can help with the healing. And be sure to take a mega vitamin, B Complex, and Calcium and Magnesium. The nutritionalist said that magnesium is a natural tranquilizer and after a couple of days I could really tell the difference. But don't overdo magnisium as it can give you diarrhea. Good luck. I know just how you feel. quote name='zanzares' date='May 18 2007, 12:09 AM' post='304724'] I've been gluten/dairy free since late March, and during that time I've had 2 setbacks. First a short medical history and how I went gluten free, then the problems. I caught dengue in the tropics in Aug 05, took a month to recover and was left with a persistent pain in my upper right abdomen that refused to go away. New Years Eve '05, I first felt a strange sensation in my chest, and within a week I had full blown mono, which I would finally discover when tested for it in March. The mono lasted into late May, early June. July 06 - Sept 06 I'm somewhat healthy and start freelance web design/development. By early October I've had a distinct shift in personality, I've quit working, walked out on a client without delivering, avoid email and anything that will stress me out. By the end of the month I've developed gluten ataxia, and having difficulty breathing, mental fog, vision problems, anxiety, nervousness, night terrors, irrational fear, etc... November was spent visiting doctors to no avail, until mid December when I decided to quit drinking so much soda/caffeine. The majority of the symptoms went away within a day, but all came rushing back on Christmas Eve during some stressful conversations. January through March 07 were less eventful than the past few months and most of the psychological symptoms had gone, the ataxia was now the major issue. During this time I began watching House MD from the start of season one, and finally ran across the episode featuring gluten sensitivity with neuropathology. While not identical to my symptoms, it put me on the right track in researching it, and I made the decision to try gluten free for 2 weeks to see what would happen. To my surprise, within a day I was feeling much better, the shaking had ceased completely, and my diarrhea went away to be replaced by a normal stool 3 days later. I stuck to the diet, and went to see a GI doc the next week, which is when I had my first setback. He claimed that celiac/gluten sensitivity was very rare, and a European problem. He was certain I had giardia or some other parasite, and I figure I should at least give him the benefit of the doubt. At this point I was still unaware of gluten ataxia and the direct neurological and psychological effects. Around April 6th, I went into anaphylaxis after taking the antiparisitic. For treatment in the ER, they gave me adrenaline, which set off my gluten ataxia symptoms of uncontrolled muscle movement. Also, for the next three weeks I would continually develop a rash and also had a week of bad nasal allergies. I think my histamines just got wound up, but all that settled by the end of April. Throughout this, I stuck to the gluten free diet, but the histamines acting up caused me to feel stuffy, and run down, so progress was hard to determine. In late April, I did a self administered gluten challenge (since I have no luck with doctors), and was symptomatic 2 days later, with symptoms lasting 5 days after onset. All the symptoms came back with a vengeance, and this is my conclusive diagnosis. Once I start work and can afford it, I will definitely do an EnteroLab test to get an official confirmation. Fast forward to this week, I'm feeling pretty good, taking all my vitamins, probitiocs, L-Glutamine, etc... But this morning, I got super stressed out/upset over a matter, went back to bed, woke up at 1pm (I'm sleeping 12-13 hours a night), was feeling off, and then around 4 I started having symptoms, shaking, anxiety, inability to focus, etc... Pretty much everything. I know for a fact I didn't have any gluten exposure, so my questions are thus: Can stress trigger gluten-like symptoms during recovery? I'm assuming yes, since the anti-antibodies are still circulating about, and any stress while i was undiagnosed led to more severe symptoms. Are ups and downs during recovery to be expected? Some days I'm full of energy, but if I try to use that energy, I'm wasted for the next 3 days. On other days I feel a bit unwell for no specific reason. When can I realistically think about working? I'm hoping to be freelancing again, but it's a highly mental and somewhat stressful job, so is late June pushing it? Should I give my body longer to heal if I don't want to crash and burn? Is sleeping 12 hours a night common? I tired getting on an 8 hour sleep schedule, but that was a disaster all the way around. I'm guessing my body needs the extra sleep to heal. Tips or tricks to speed recovery? I'm open to suggestions. Apologies for the long post, and thanks for any answers.
  3. I have seen two internists, and two GI's. All agree I have IBS, but after being tested by Enterolab, I showed a mild gluten sensitivity. When I returned to my GI, who is a Celiac specialist and has conversed with Dr. Fine, he said that sometimes Enterolab gives a false positive for gluten sensitivity. BUT...since I had a terrible intestinal problem following three rounds of antibiotics, I definitely have IBS and according to this GI, some who have IBS are often sensitive to gluten, eggs, milk, fructose and sugar. Since I never had a gluten problem before, I suspect that the IBS has made me gluten sensitive. I am gluten free and will remain so until my intestines heal. Then we will see. By the way, all of my blood work for Celiac was normal as was the biopsy.
  4. I know exactly how you feel and told my doctor the same thing two days ago. I also have mild ataxia. He said the it takes a long time for the intestines to heal and that eventually I would be better if I watch my diet. I also have IBS and have moderate pain in my upper colon, sometimes in the flank also, and often have to go to the bathroom several times a day. The doctor said that as long as the colon is inflamed, all of these symptoms would remain. It does get better when I eat a bland diet: potato, rice, turkey, chicken, banana, applesauce and throughly cooked veggies such as green beans, squash, and spinich. Why not take a few days and go bland, without gluten of course, and see if things get better. They do for me until I mess up again.
  5. Just found something interesting. Metamucil does not tend to agree with me, so I bought some Benefiber as it is made with Guar gum. When reading the ingredients on their website, it says it is gluten free even though it contains wheat dextrin (less than 10 ppm gluten). Can this not cause a problem with Celiac, and if so, what in the world can I take in the way of fiber that is absolutely gluten free (I also have post infectious IBS).
  6. Marcia, Can you or anyone describe your ataxia. Three months ago I was hospitalized with diarrhea and dehydration following three rounds of antibiotics. The colonoscopy showed IBS and all Celiac blood test were normal. However, when I was discharged from the hospital, I had difficulty walking and now periodically, especialy with anxiety, have a little trouble. It is like my legs don't want to work correctly. No one else notices, but I feel it. I also noticed some spacicity in my arms upon waking in the morning. This is all much better (only occasional episodes now), but I have pretty much gluten free for the last month. I just wondered how anyone else would describe theri ataxai.
  7. Thanks for responding. I took the antibiotics because I had a severe sinus infection-first in my life and am prone to pneumonia. I have been on this diet since mid March, but take a mega vitamin, a probiotic, and metamucil. I assume they tested for Candida when they did the biopies of the large and small intestine, but all but IBS was ruled out. The GI who ruled out Celiac is very highly regarded, but I just feel that I should be getting better much faster. What are amalgams?
  8. I would like some opinions from all of you, who may know more than the two GI's and two Internists I have seen. Here is the scenario and I apoligize if I ramble: I took three rounds of antibiotics during January and February. During the third round, I became very ill with diarrhea and was hospitalized for that and dehydration after 10 days of feeling horrible. I was tested for C Diff and it came back negative ( 30% of people with C Diff have negative results). I went to Little Rock to see my Internist who said it was IBS caused from the antibiotics. I then went to a GI who performed a colonoscopy and said all was well and I had IBS. He also ran Anigladin, antiendomysial, and Anti-human Tissue transglutaminase. All tests were negative. I had not been gluten free at this point, but was not consuming a lot of gluten or anything else at this point. This GI said that the tests he ran were proof positive that there was no Celiac. The second GI had me send my stool to Entrolab. this test showed a result of 43 ( 10 - 350 means gluten sensitive) but this GI said often the stool test gives false positives, but I should remain gluten free for a while and see if I get better. The second Internist said the same. I was wonderful prior to the antibiotics and was consuming a ton of gluten with no problem whatsoever. And while I am somewhat better, I still feel like 'heck' most days even though I have been gluten free, toher than one messup a week ago. My symptoms after I got sick were: nausea, diarrhea, myclonus (jerky movements of the limbs), ataxia (difficulty walking), extreme fatigue and weakness, and horrible anxiety and panic attacks. I am, and have been hypoglycemic for years, but it is worse since I got sick. While you do not read of myclonus and ataxia with IBS, my GI says it is not uncommon for someone whose intestines were as messed up as mine were. I just don't know what to do. I can't eat any sugar drinks, nothing with gluten, and have to be so careful with other foods that my diet consists of rice, potato, bananas, applesauce, avacado, carrots, green beans and that is about it. If any of you have any advice, PLEASE ADVISE AS THE ANXIETY IS KILLING ME. Thanks for listening.
  9. Melisma, I had exactly the same symptoms except that I also had jerky movements of the hands, arms, legs and feet when I laid down to go to sleep. It all drove me crazy and scared me to death. After several blood tests, a colonoscopy and biopsy of the small intestine, my GI insists I do not have Celiac (I have sent my stool to Enterolab for further testing.) I do have IBS after taking several rounds of antibiotics and was hospitalized. That was six weeks ago and I am just now coming around. I went gluten free two weeks ago and followed a very strict diet (baked potato, rice, banana, small amount of yogurt, chicken breasts, lima beans and apple sauce) and I am better. I still have some 'jerks' , periodic burning chills and am weak. I am alos taking Platinum Plus and a probiotic. Those seemed to really help and get me started feeling some better. The biggest relief is knowing what was happening. My friend and chiopractor says the burning chills and jerks are from stool passing along the inflamed nerves of the intestine. Once the intestestines heal that will all end and it is better now. Like you I felt awful and am still not absorbing much nutrition, but I eat several times a day and drink gatorade and Pedialyte. The Pedialyte will replace necessary electrolytes. Don't give up. I have a long way to go, but am definitely better and had every symptom you had except the neck and spine pain-I had headaches. My chiopractor has helped more than anyone with accupuncture and I NEVER thought I would be going to a chiopractor, especially for accupuncture. Yesterday afternoon I received the results of a stool test confirming that I have a gluten sensitivity. I intend to go gluten free right away.arted on the right track. Your drug store should carry them or be able to get them. Since February, my stomach and gut have been hurting etc. I'm relieved to find out the reason why. My question is about other symptoms that I'm experiencing and whether they can be connected to gluten sensitivity. My hormones have obviously changed recently because my period returned last month 8 months postpartum. With it has come chronic insomnia and strange neurological symptoms: burning at the back of my head, pressure in my ears, a stiff painful neck, pain that shifts the whole length of my spine, a stiff spine, occasionally my hands and feet sweat and feel numb. Sometimes I get waves of "burning" chills along my spine and back and into my hands and feet. This is all worse at night. When the waves of symptoms come at night, I also feel panicky (but I don't feel short of breath like as in a classic panic attack). I am exhausted during the day and feel weak and shaky. Can gluten sensitivity be related to hormonal problems or explain any of my seemingly neurological or nervous system issues? Has anyone else experienced these symptoms? I am not experiencing any impaired motor control. Thanks in Advance! Melisma
  10. I know the feeling. I was hospitalized for diarrhea and dehydration in early March and have been to three doctors to figure out what is causing my frequent bowel movements, fatigue, weakness, myclonic jerks and numbness in the arms and legs. Acolonoscopy with a biopsy of the small intestine and all gluten blood work showed nothing-leaving a diagnosis of Irritable Bowl Syndrome-IBS. If you do have IBS, coffee, even decaf is one of the worst things you can do. I was also tled to leave off all milk products other than plain yogurt. it has helped with the bowel movements to some extent, but am a long way from well. There are many others on this forum, including CarlaB, who have much more knowledge that I. Maybe you will hear from them. There is an excellent IBS Forum www.helpforibs.com that might provide help. Patty
  11. Thanks Carla, I will consider that. I think maybe I should have given more explanation, but am so darned sick and scared of this, I can't think straight. I was very sick and dehydrated when I was hospitalized in early March. They thought it was C Diff due to the long term antibiotic use, but the test was negative. I now know that C Diff does not show up 0% of the time in testing. After seeing an internist and a GI, having he colonoscopy, and four different blood test for Celiac, they say I don't have Celiac, but rather IBS . BUT the symptoms are so similar to others: spasmodic jerks, numbness in the extremities, weakness, diarrhea when I eat the wrong thing.I have found noone on the IBS forum who has these symptoms. Guess I will have to wait to have the Enterolab results before I know for sure. I have misssed a month of work and am considering retiring in June, but don't want to if I am going to get better. Thanks for listening.
  12. I certainly hope someone can help. I took antibiotics for 30 days for sinus and ear infections and wound up in the hospital with diarrhea and dehydration. Since that time, I have visited three docors and had a colonoscopy. The colonoscopy and bolld test show no Celiac, BUT, every time I put a piece of bread, a beer or anything with gluten in my mouth I get very, very sick. I am sending my test kit to Enterlab tomorrow, but can someone tell me if these symptoms are classic for Celiac and what can I take to help this situation: Diarrhea, extreme weakness and anxiety, tingling in the arms and legs, twitching and jerks of the hands, arms, legs and various body parts. If the twitching, weakness and anxiety would leave, I can handle the rest. What in the world do you do for this, other than gluten free, which I am now definitly sticking with.
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