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About anemic

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  1. Thanks for collecting these stories, it is important for people to learn and understand celiac better. I am 33 and have 2 children. When I was a university student I had a lot of gastro symptoms and had the whole gammet of tests- nothing showed, just diagnosed with IBS, took medication for 1 year, symptoms improved. When I had an emergency c-section with my first child and hemmoraged, I was given a lot of blood yet still had low iron. I had really bad pospartum, in retrospect I was probably severly anemic. With my second c-section, I was really anemic again and told to keep taking iron. To be honest, I didn't take it very seriously, I was too busy with two babies to even think about how tired and pale I was. Then I began getting migranes for the first time. One morning I thought I was having a stroke because the visual aura was interfering with my vision. The ER doctor reassured me that it wasn't a stroke but that I needed a blood transfusion because my iron and hemoglobin were so low. This blood issue continued for 2 years with a number of blood transfusions, prescriptions and iron shots. Then went I was in the ER for assumed appendicitis, the surgeon came and said "good news you don't need surgery today, bad news is you need a blood transfusion and a hemotologist" Seeing a hemotologist was a 6 week wait (in Canada) but well worth it as my family doctor (wonderful guy) was unable to manage what was assumed to be iron deficiency anemia. By this point, I was so weak all the time, my iron was 3 and I was losing my mind. After many, many tests the hemotologist diagnosed celiac- I was relieved it wasn't leukemia. I was diagnosed on January 26, 2007 and it has been a difficult spring. I have had 10 iron infusions which has brought my iron up to an almost normal range. Since off gluten I am feeling better and exercising every day, gaining weight and have nice pink cheeks. It is still full of ups and downs and it is amazing how much of your body is affected. I want to run every day but it is really difficult with the joint pain in my back and knees. I was spending hundreds in chiropractic which I no longer need because I'm gluten-free. The neuropathy is concerning and my eyes have taken a beating. My blood is the key issue and I will know at the end of the month whether the diet is solving the problem, or if additional causes need to be explored.
  2. What has happened since the infusions? I have the same problem. The infusions worked for a while but began to level off. I am waiting to see my hemotologist. I've had 10 infusions which should have brought my iron to over 200 but I can't get past 100.
  3. Hello everyone! I have had 10 iron infusions in the last ten weeks that was supposed to cure my severe anemia from celiac. At first the treatments appeared to be working fairly well but in the last month or so my ferritin has levelled off and is no longer increasing with treatment. I will be seeing my hemotologist in a month or so to discuss the problem but wondered if anyone else has had this. Of course, my worry is that it is not just celiac but also another disease affecting my blood. Any thoughts would be most appreciated.
  4. I've had my 5th iron infusion this week (5 more to go) and my ferritin is 99 (hasn't been for years) and my hemoglobin is 135. I feel really good- here are 10 reasons why 1. I finally have the energy to chase my children around, and actually catch them 2. I can focus at work and finally catch up on the last 2 years worth of mess 3. I'm getting used to potato and corn pasta and it's not so bad 4. I can fantasize about great bread with other celiac friends, its almost as good as... 5. My weight is going up 6. My anxiety is going down 7. I'm sleeping better 8. The dry skin, eyes seems to be improving, just in time for bathing suit season 9. I have to be organized about family meals so we're not wasting $ on take-out and fatty, nasty stuff 10. I am finally in control (somewhat) of my illness, rather than it controling me. Tune in next week when I'm having a total meltdown over the craving for a hotdog bun and cold beer!
  5. Is the diet a bugger? YES! Are you worth it? ABSOLUTELY! We all miss beer and delivery pizza and eating whatever, whenever. It gets easier with time but will never be perfect- just keep on trucking along!
  6. Just needed to share my anxieties at the moment. I was diagnosed Celiac in February and have adjusted reasonably well to the diet (sometimes I freak out) My father-in-law is Celiac but has refused the diet, also diabetic diet (crazy, eh?) So last week my husband, daughter and son had the blood work done, it may be back at the end of the week. My daughter is almost 8 and last year was diagnosed inattentive ADHD and has been taking Strattera which has helped her at school. She has no behavioural problems, just anxiety and daydreaming, unable to complete tasks, stay focused. It was very difficult to decide to use medication but she was failing grade 1 and her self-esteem was suffering. If she tests positive for celiac, I am terribly worried that we medicated her unnecessarily and the celiac is the true cause of the "brain fog" My son is almost 6 and has been a terror since birth. He had a lot of problems as a pre-term infant and was off soy, meat, nuts, dairy for his first 2 years, giving his intestines extras time to recover. Since then he has been just fine except for his Jeckyl / Hyde behaviour. My husband has some intestional symptoms of celiac, but is basically a really healthy guy. I guess I'm just worried about whether my kids will test positive and the difficulties this will cause for them. My daughter is already concerned about what it will be like for her. The other issue is that I hear so many people say the blood work is inaccurate, should I take everyone off gluten regardless and just see what happens?
  7. Hello everyone! This forum has become a tremendous source of support for me, even my 5 year son says "go talk to your celiac friends on the computer" when we sees I'm feeling frustrated. My Mom and I are going to New york City for 5 days, we have been planning this dream trip for months. I am very anxious about eating out for this long so I've got my restaurant cards laminated and have a list of restaurants that have gluten-free menus. We have made dinner reservations at 4 restaurants I have always wanted to go to- I'm a bit of a foodie and I specified on the reservation- NO GLUTEN PLEASE! For me the problem is that I don't have the GI symptoms- I have very bad anemia instead. I am so scared that I will have gluten by accident and not know it. Likewise, my hemotologist said that in time I will probably begin to have GI symptoms if I have gluten by accident. Has this ever happened to anyone? Also, as I write this my kids are playing playdough- should I get rid of playdough, glue etc. I just found out about gluten-free make-up last night, it really hadn't occured to me to get rid of my makeup. Do all of you live in gluten-free households? My husband and kids are still eating gluten and I'm alwys nervous as I'm cleaning up bagel and cereal bar crumbs.
  8. Thanks for all the feedback I got last time I posted. After 2 years (this Easter) of regular blood transfusions for chronic and severe anemia- I think I'm finally on the mend. I am seeing a great hemotologist who recognized the Celiac right away and proved it within 6 weeks. I'm having iron infusions every week for 10 weeks (pain to take a full day off work every week) and by the beginning of May I should be feeling much better. The gluten-free diet is the pits, most of the time its fine but it is time-consuming and sometimes you just don't feel like it. Tonight I yelled at my husband in frustration and was grouchy with my kids. All I wanted was to order a pizza or get hamburgers. All in all, I am eating a healthier diet than I have in a long-time and my kids and husband are getting tested next week (my father-in-law has Celiac) This forum is very helpful and supportive!
  9. Have you had some blood work done recently? Might be an idea to get the iron checked-
  10. Just wondering if anyone else is struggling with anemia as a result of Celiac. My iron is 3 and I'm having iron infusions every week. My dr's office left a message today, probably to let me know that I'll also need a blood tranfusion as I suspect my hemoglobin has dropped- will find out tomorrow. The gluten-free diet is a pain but o'kay, but the anemia is really getting me down- many blood transfusions and iron shots over tha last 2 years. I have a 5 yr old and 7 yr old and a full-time job and feel like I have barely been able to keep it all together as I'm constantly tired, poor memory, no concentration, etc. Just wondered if anyone else felt this way and what to do about it...
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