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Now we find out how well I've healed on my gluten free diet. Anemia has almost killed me a number of times. I've had to have numerous transfusions. I've had anemia induced/lack of oxygen heart attacks. For the last 10 or so years I have been on an Iron based drug that has kept me alive. Occasionally I have to fight for insurance coverage because it's considered a "supplement".
Over the counter iron has never worked. I usually have to get hold of my State Representative, and he always pushes it though for me. One-by-one, the pharmacies that can supply this drug have stopped carrying it. One-by-one, the companies that produce this drug have stopped production. Each time I have had to fight for the new one/generic one. Now, the last producer has stopped.
Normally, after I quit taking this "supplement" it takes two to four weeks for me to end up in the hospital for transfusions. They have never found a cause for my anemia. They have even done a bone marrow biopsy (very unpleasant to say the least). They can't find any bleeding. My bone marrow is fine. I now believe it's Celiacs and have cut gluten out of my diet for the last three months. My hemoglobin is the highest it's ever been. I'm praying it's enough.
I talked to my pharmacist and we have worked out a combination of all of the active ingredients in the supplement. The main one I can't get is succinic acid, which, apparently, is what helps with the iron absorption. I can't even get it with a prescription because it isn't sold by itself. It's used IN things to boost absorption.
The upshot of all of this is, we get to see if what I have been doing with food is enough to get me through it. This was the main reason I started this trip, to regain health and be able to start dropping the meds. I have to say though, this is like learning to swim by being dropped in the deep end of the pool. I'm very scared.
View Diet Calendar, 04 February 2011:
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1271 kcal
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Fat: 45.00g | Prot: 40.59g | Carbs: 187.28g.
Breakfast: Truvia, Brown Rice Farina, Smart Balance, Scrambled Egg, Almond Milk, Coffee, Fasting Glucose 107. Lunch: Diet Cranberry Juice, Truvia, Brown Rice Farina, Smart Balance, Scrambled Egg, Almond Milk, Coffee, Apple. Dinner: Broccoli, Dark Sweet Cherries, Smart Balance, Uncle Ben's Natural Brown Rice, Smoked Turkey and Cannellini Bean Cassoulet. Snacks/Other: Peach Mango Green Tea. more...
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2526 kcal
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Exercise:
Sleeping - 8 hours, Resting - 15 hours and 30 minutes, Walking (slow) - 2/mph - 30 minutes. more...
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 Comments
Johanne I am praying for you dear friend..I can't believe the companies are
stopping this. Hoping the pharmacist can find out more for you...Is this a
rare condition? Love Ya girl..Keep us posted...Bren
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Thanks Bren. No, anemia can be caused by a number of things. The Dr.s have just never figured out what causes mine. I now believe, since I've had it all my life, along with all the other symptoms of celiacs disease, that celiacs is the reason. As I've posted on here, I accidentally went gluten free and ended up diagnosing myself. I made the Dr.s follow up with tests and it was true. I'm hoping, since my hemoglobin and iron levels have never been as high as they are now, that I have healed enough to handle this. I did just find out that succinic acid IS available over the internet, and according to wikipedia, the FDA has approved it as safe. I can get it through Amazon. That, with the set of supplements my pharmacist and I worked out, should be a fair replacement. We'll see. Love you too!
04 Feb 11 by member: Johanne
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I'll be sending thoughts and prayers your way, too, starting with the firm belief that you won't need them! :) You've done such a miraculous thing with your health, I definitely believe that the miracles have not dried up for you. It's truly disheartening sometimes to find out how difficult our medical system is for so many relatively simple things. :( Anyway, good luck with the replacement supplements, I hope the alchemy is right for you!
04 Feb 11 by member: jessie1326
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Jo, I too suffer from extreme anemia that has the Dr's completely baffled as to why, I have also had to fight with my insurance over the stuff the Dr's have had me on so I understand the fight you have had to go through for the drugs you need. I am sure that you will be fine and that the changes you have made to your lifestyle will prove to be enough to get you through this. With that said, I will keep you in my thoughts. Keep us updated my friend. ~hugs~
04 Feb 11 by member: pixidaisy
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Wow, Jo, I didn't know how bad your health problems have been. So glad you seem to have gotten a handle on it through changes in your diet. My thought are with you too, and I hope you'll have some good news!
04 Feb 11 by member: cocobutt
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Oh, my dear friend, I am so sorry that this is happening to you. How scary this must be. I am praying that your changes have made the difference that will allow you to be healthy even without this drug. Has your dr tried Vit B-12 shots...that is what they always did with mom when hers got that low. She would go in weekly and get the shot. They never fidured out what causes moms either. I ahve her on an OTC iron supplement, but she nees to get her levels checked again to see if it is helping. She told me the other day that she is concerned about her iron levels as she has started craving chocolate and that is usually a sign for her that her levels are dropping. Hope that the news supplements that your pharmacist helped you with and the succinic acid will fit the bill. Hang in there and hugs! Hubby and I will be praying for you.
04 Feb 11 by member: ctlss
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Steph, if your mother needs to chew ice, that is also a sign of severe anemia . . . have no idea why, but it is. I have gotten B-12 shots for years. Does she have any of the signs of celiacs other than anemia? It's inherited, which I've thought might be part of your issues as well. Thanks for your prayers. This next few weeks may be a rough ride.
04 Feb 11 by member: Johanne
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Coco, that's why I am so religious about turning my health around. I love being alive and want to do everything in my power to try to make that happen. I hope the dietary changes are enough.
04 Feb 11 by member: Johanne
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Jessie, thank you so much for your positive thoughts. It means a lot.
04 Feb 11 by member: Johanne
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Pixi, I know I mention this waaaaaay to often these days, but have you thought about celiacs? One of the things it can do is suppress growth. I know you're tiny. I've had most of the symptoms, most of my life and not one Dr. over the years put two and two together. One of the most apparent symptoms is unexplained anemia. Once I went though menopause 11 years ago, they could no longer blame being female. Before that, they kept wanting to give me a hysterectomy. Sometimes I hate Dr.s!
04 Feb 11 by member: Johanne
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Scary stuff Johanne, keeping you in my thoughts. I bet the gluten-free diet will be a big help. xo
04 Feb 11 by member: Z'sMama
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Thanks Z's. I sure hope so. In the past, even with the supplements, my hemoglobin hovered between 8-11. It's been as low as 4.6. This time it tested at 14.2. That has NEVER happened before. I can only attribute it to my intestines healing from the new, gluten free diet. I hope it's enough to turn this all around. I want to thank you all for your support and for keeping me on my toes. I love this site and all my buddies here. It just may save my life . . . fingers crossed!
04 Feb 11 by member: Johanne
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Jo, not that I know of...she can eat just about anything she pleases with no ill effects other than her wieght. I sure hope that all the changes you have made will prove to be just what yor body needed to heal itself! HUGS!!
04 Feb 11 by member: ctlss
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Thanks Steph. Me too. We'll know within a month. Thanks for the hugs and I'm sending more back to you. Love you!!!
04 Feb 11 by member: Johanne
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Worlds best healthcare system indeed. Sheesh! Hope you can do with diet what the doctors are unable to! Wouldn't be the first time it happened. Crossing my fingers for you!
04 Feb 11 by member: k8yk
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You know the more I read about your health problems and the more I think about it I may go talk to my Dr about it and see what he says. It would explain a lot of the other issues I have as well... gives me something to think about that is for sure. I really dislike dr's most of the time because they are constantly doing things like that to me.
04 Feb 11 by member: pixidaisy
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Thanks Kate. Unfortunately, our health care is dictated by the insurance companies. We are FAR from the best, unless you just happen to have the health insurance coverage our congressmen do . . . FOR THE REST OF THEIR LIVES if they serve just one year in congress.
04 Feb 11 by member: Johanne
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Pixi, keep this in mind. If you go gluten free before you are tested, the test results come back negative. The three weeks before my test, I pumped gluten like mad to get it back into my system (boy was I sick) and the results barely came back positive. Also keep this in mind, there is absolutely no health downside to going gluten free except that if you get a lot of your vitamins and minerals from "enriched" foods, you will probably need a good multivitamin daily. Going gluten free is inconvenient when you are first learning, but I've found most good restaurants have gluten free menus and dishes. If you don't make/eat a lot of baked goods, it isn't as expensive as it first seems. The alternative flours and xanthan gum are pretty pricey. I just don't bake often. It's taken quite awhile, but friends and family are finally trying to accommodate me when I have dinner there.
04 Feb 11 by member: Johanne
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Thank you for the info Jo! I will keep all of that in mind. I don't bake atall because well... I just can't bake at all lol
04 Feb 11 by member: pixidaisy
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