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Karrin

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  1. I am just having a few days of self-pitying, so I was hoping you guys might understand where I'm coming from! I'm just so overwhelmed right now with everything! I've had such a tough year and I'm just ready for it to be over! Since January 2009 I have had pneumonia twice, strep throat twice, 3 other viral infections, an ovarian cyst, diagnosed with Celiac disease (which was a good thing actually), the flu three times, bronchitis, my asthma is getting worse, kidney stones, Fifths Disease, a few colds, and mono. It just seems like my body has not had enough time to recover from one thing before I'm hit with the next. It's just one thing after another, after another... I'm so tired, so worn out. My body is just screaming at me to just sleep for days and days and days at a time...but of course, I have to work full time! I'm so emotionally drained from all the doctors visits, tests, hospital visits, ER visits, labwork, missing work... It's just EXHAUSTING!!! In the month of November alone I had the flu for 5 days, kidney stones for a week and a half, and Fifths disease just this past week -- now I know Fifths disease isn't really a serious thing at all, but this rash ITCHES LIKE CRAZY!!!! I look like a dalmatian with pink spots!

    I've started getting embarassed about the number of times I've been sick. I feel like I'm burdening my boyfriend with all my many illnesses. He's been wonderful about it all and has taken great care of me, but I still feel really bad about it all. I am sticking so strictly to the gluten free diet and pretty much all of my Celiac stomach symptoms have gone away -- and the joint pain, head fog...so I'm incredibly glad about that. I take vitamin supplements, eat tons of veggies and fruits. I don't eat red meat, hardly ever drink, and I don't smoke. But it's like my immune system realized it doesn't have to fight the Celiac anymore, so it decided to take a freaking vacation for a year!!!

    I just really need some words of encouragement! Now yes, I realize it could be a TON TON worse! None of what I have could compare to some of the things some people on this board have to deal with on a daily basis, so in that sense, sorry for complaining! I'm just so overwhelmed and I feel like I'm an emotional breaking point with all these illnesses!

    And not to mention the other emotional stressors -- mom is having some major blood pressure, diabetes issues. My parents divorced because my dad had an affair and he decided to leave the family to be with the other woman. Now he calls us or texts us to tell us how much better his life is now without us. Or the other thing he texts us about is whether we'll feel bad or sorry or feel like it's our fault when he decides to kill himself.... Those calls generally come during the middle of the night....

    So anyway, thanks for listening!!!

    I know how you feel in regards to feeling like a 'burden'. I went undiagnosed for years, nearly 5 of those I have been too sick too work and not knowing why. My poor husband has had to pick up all the slack and I feel awful about it. I'm very luck to have such an understanding man in my life. It can be extremely frustrating - the isolation and the complete lack of control over your own body. It's often like life is passing you by.

    If you are still getting sick all the time I would be a little concerned, especially with the extreme fatigue you say you are still experiencing. Sometimes people with autoimmune disease have overtaxed immune systems - that is our immune system is so worn out fighting our own body that the stress makes us very prone to illness. In my case I had other undiagnosed autoimmune conditions beside celiac sprue that failed to turn positive in blood tests, my doctor had to go off of my symptoms, many of which improved or went away with the gluten-free diet - but not all. I was still very sick 6 months into the diet. I'm now on prednisone and having a period of remission - the best I've felt in at least 5 years! So be on the lookout, know your own body and don't be afraid to pester your doctor about all your options if you are still concerned something isn't right. Don't settle!

    I hope you feel better! Here's hoping for a great 2010!


  2. Ok, found out I have celiac disease on the 4th of Nov. and now I have been gluten free for two weeks today. I have had NO problems and have felt better then I have in years!! Well, today I ate my gluten free waffle for breakfast with some eggs...then went to a NFL football game (TONS of hot dogs and brats with buns going around) and then ate out, had rotisserie chicken and a baked potato. I have eaten this in the last two weeks, talked to the manager and everything and had no problems what-so-ever. Well, now hours after eating anything, I have horrible pains, tons of gas and gurgling and now suddenly have the big D...is this normal for when you are healing or did I get glutened? You all always seem to know what to tell me :) thanks! I love this site, has helped me a lot so far.

    It seems quite possible you were glutened - maybe by the spices put on the chicken, many contain wheat to make them stick - or maybe from a contaminated surface or where it was cooked, a shared spatula etc. I've had similar experiences going out to eat, been fine once and the next time there was a different chef who perhaps wasn't as careful. Now, I like to speak to the chef or whoever is preparing the food if possible. I've never been glutened this way. It is also possible you might still be healing, since it has only been two weeks, though I think the CC seems far more likely. I actually needed prednisone to help my gut heal, so I'm not as keen as others here on how usual or unusual your healing is progressing. Six months into the diet and I was actually worse than before I began. I think my situation is rare however.


  3. Hi Karrin,

    Mtndog's is right - my husband went on prednisilone to help him heal after 6 months of being gluten-free and not seeing any improvement.

    My husband also has Psoriatic Arthritis.

    After a repeat biopsy showed no improvement in his villi his gastro doc started him on a course of steroids (I believe quite high at first then tapering down each week)

    OMGosh!!...the improvement was DRAMATIC!!

    He went from a man who was sleeping 20 hrs+ a day who could barely muster the strength to eat a few mouthfuls to a chatty, alert, HUNGRY person!!

    He would actually get up in the night to eat (yes, he found it hard to sleep on them)...and a plus was that it totally wiped out any arthritis pains.

    I know some people see immediate results once going gluten-free but my hubby wasn't one of them <_< - the steroids were a turning point.

    You say you've had no endoscopies?..... but if you don't feel an improvement soon I think it would be prudent IMO

    Have you a Thyroid blood panel done (hair loss/skin rashes?)

    Ok, I know you know the dangers of steroids (taper off!!)... but you might also want to have a bone density scan at some point too as you'll be a 'double' risk for osteoporosis now (steroids + coeliac)

    PM me if you have any more questions - really hope you start to feel better soon! :)

    I have had thyroid panels done and they are always normal. I'm thinking it could have been the lack of food absorption that was causing it.

    It's a relief to hear your husband's story. It sounds very similar to my own and I wish I'd heard it earlier. I think it's important to get the word out to those of us who are suffering without result from the diet alone. I had no idea in some cases it wasn't enough. I've not been on the sterioids long but, like you said the improvement was dramatic. I could barely move I was so weak and less than 12 hours after my first dose I started to perk up. I'm able to eat now and actually digest my food. My skin is soft and the rashes I was getting are gone. Even my hair is shinier and isn't falling out like it was. :) Oh and the joint pain is gone - for the most part. I fear there has been permanent damage to my knee, fingers and wrists. The inflammation is all but gone except in one troublesome finger, my stomach is even looking flat. No more preggo belly! I have a waist! The best part is that I'm actually digesting food like a normal person - oh and my reynauld's is all but gone - and in late fall no less. My husband is actually the one trying to snuggle into ME for warmth! hah!

    And thank you! I will certainly pm you if anything unexpected pops up. :)


  4. Thanks karrin- I know that there are several board members here (or their spouses) that have had to go on a steroid when first diagnosed with celiac because the damage was so bad. Nikki-UK's husband was one of them. If the damage was that severe this may be why the prednisone is helping.

    But, if I were you, I'd go back to the doctor and make sure that there isn't anything left to rule out. I don't know how long you were gluten-free before you started relapsing but passing undigested food after having a positive response to the diet sounds an alarm to me. It could be anything from Crohn's (I have a friend with it and that was one of her symptoms) to refractory sprue to microscopic colitis.

    The other symptoms (hair loss, skin rashes) could be a result of your body not absorbing nutrients.

    Hope you find some answers and HEALTH soon!

    Thanks, I'm hoping so too. So far this seems to be doing the trick, but if things turn around again I will go in for that endoscopy without delay. I'm in constant contact with my doctor and he's keeping a close eye on me. My stool turned normal only a day or so after going on the prednisone and the terrible nausea I was experiencing has gone away too. I'm also glad to hear that I'm not the only one who has needed the prednisone after going gluten free.

    As for my response to the diet, I was diagnosed at the very end of May and started the diet immediately (I just start counting from June since the dates are so close). I experienced relief most significantly during June - but was still weak. July and August were still okay, less energy, and September onward everything progressively went downhill. I was pregnant briefly during that time and wonder if that might have put me in a slight 'remission'. Interestingly though, minus the gnawing feeling in my stomach and nausea, my digestive issues were completely different this time. I was always constipated when I ate gluten, had the preggo belly and painful gas - none of these have returned since going gluten free. It was only about a month ago that I started passing undigested food and bright yellow stools, otherwise I was just exhausted/weak. I'm banking on the idea my gut probably was too severely damaged to repair itself on its own.


  5. I want to make sure I understand you correctly. You have celiac and you DID test positive for RA? If you did test positive for RA it would explain why the prednisone is making you feel so much better.

    If you have celiac but not RA too, I wonder if you have been tested for Lyme. Its symptoms can mimic a lot of other diseases including RA, lupus and cause many of the symptoms you are describing. Prednison would definitely help with Lyme symptoms because it targets inflammation (esp joint pain and swelling) but in the long run steroids are bad for Lyme as they suppress your immune system.

    However if you tested positive for RA, then that is probably the culprit. I was reading an article on Kathleen Turner, the actress. She has RA and has been on and off steroids. You might want to do a google search and read about her experiences.

    I had a positive blood test for RA and celiac sprue - the only positive blood tests I have had. The reason I feel I have something more than these two, maybe refractory sprue, is due to my continuing digestive issues - which are now clearing up along with all my other problems with the prednisone. I have not had any endoscopies to verify this however, and don't really want to unless necessary. My years of illness and inability to work have left my husband and I in debt over medical bills. If my digestive issues do return though, I will have to have one to rule out cancers or other bad stuff. I would like to exhaust the least invasive options first though and so far this one is working. :)


  6. Have you been diagnosed with refractory sprue? You say you started Gluten-Free diet in june as in 5 months ago? I dont think thats nearly enough time to be healed from celiac. It took me a year for my symptoms to clear all of which were similar to yours. They did come and go and come back with a vengance a few times. And I was not cc'd either. It is such a long, slow healing process. I think your doing the right thing and when I was at my worst, I would have taken any medicine to stop the pain. Give it patience and time, I know how hard celiac can be but it does get better with time. Are you taking any vitamin suppluments by the way? Thats what eventually turned me around was finding out what I was deficient in and correcting it. Its a HUGE part of celiac because you are not absorbint the nutrients your body needs because of the damage in your intestine. Hope it helps. :D

    My only official diagnosises are celiac, ra, endometriosis and reynaulds. I do believe I have another autoimmune disease however. I was receiving no relief from the diet except in my first few weeks. My digestive symptoms were also atypical for me - before going gluten free I was chronically constipated and was inflated like a balloon. For me the prednisone is worth it for my RA alone. I'm very sorry I did not start it earlier. I was too afraid of all the side effects I read about and in the meantime my RA really took a bad toll on my joints. My fingers are slightly deformed, hands weak, and my right knee makes it hard to climb stairs. I was also using my celiac symtoms (joint pain/swelling) as an excuse for the damage and hoping the diet would clear it up. Bad mistake.

    Perhaps my other symptoms might have cleared up after a year or more on the diet alone, however I was and am not willing to take that chance. The last 2-3 months my health had taken a new turn for the worse. I was as bad, if not worse than before starting the diet in June - worse than I have ever been. I really think I was heading for disaster. I was not digesting any of my food - it was all passing through - solid. I must stress my diet has been all whole organic foods - avoiding things like nuts, eggs etc just in case. I've been taking supplements, but I doubt I was absorbing any if I wasn't digesting food. Whatever was going on it has stopped. My stools are normal -solid and brown for once! - and the nausea is gone alone with all my other symptoms. It makes me suspect refractory sprue, which I've read does not clear up with diet alone. It needs help to get there. I've also put on a bit of healthy weight finally! :)

    The dose I'm on is also not nearly as high as some of what I've been reading in this thread. My doctor actually just reduced it. I am on 15mg a day. My side effects have all but disappeared with the lower dose (I was on 20 before). I can not imagine 50.


  7. I too would take prednisone, carefully prescribed by a trusted doctor if I had no other choice. When I was told I had autoimmune liver disease and learned that prednisone would probably become a regular, and possibly long term medication, I was very disturbed. I was more upset regarding the probable use of long term prednisone than I was about having a potentially fatal diagnosis. Of course, I would take it if it prolonged my life. However, if I developed the symptoms I feared most, using the med would severely diminish my quality of life. My purpose in writing a forceful warning was only to make people aware of the drug's consequences and to encourage informed use of the drug. Doctors and pharmacists frequently do not take the time to educate patients regarding the proper use of prednisone. It was never my intent to persuade anyone not to use this med if they believe their doctor has fully explained the potential side effects and they have made an informed choice to take it. I have, and will continue to use it as a short term med to break the cycle of any serious condition that doesn't respond to other meds. I am an asthmatic and very occasionally need prednisone. Most recently, it was prescribed because I had such severe muscle pain and exhaustion. The prescribing doctor used it to rule out conditions that respond to steroids. I apologize, Karrin, if my vehemence irritated you.

    Oh it didn't at all and I didn't mean to imply you were in any way demonizing its use! My reply was a general one to anyone who might stumble upon this thread that is not feeling any relief. I think you are absolutely right to caution others and I was trying to do the same, but wanted to make sure they also understood that it had helped me tremendously and not to fear bringing up the option to their doctor it if they were still sick with no other explanations. I have and I am sure most people who come here have known their fair share of 'brush you by' doctors - or might not realize they have one. Very dangerous! I was simply afraid that others might stumble upon this thread and assume the treatment is always worse than the sickness, overlooking possible benefits as I once did (or think it was a way to cheat the diet). I am a big chicken and have always hated the idea of taking medicine, even tylenol, so I know how scary it can be to take that little leap! ;p I was trying to help inform as well, in my own clumsy little way.


  8. I understand it is no ones intention to frighten me off this medication, but to educate. However, I do think anyone stumbling upon this thread that is not feeling any relief from the diet alone might read this and freak. I know I did after stumbling on some older threads on this site regarding prednisone. We read the side effects and think the worst. We think, oh no, do I want to take such a powerful medicine for life and how will it effect me?

    Until recently (like celiac disease) I had no awareness of refractory sprue, which does not clear up with the diet alone. If you think celiac disease is unheard of try getting answers on refractory sprue! Many of us also suffer with other serious autoimmune diseases that go undetected by blood tests alone. For us prednisone is a godsend and worth a look into. I was terrified of the idea of taking it before, but it has already changed my life 180. The worst side effects I have experienced thus far are a bit of sleeplessness now and then (even then I have energy to spare the next day) and a slight increase in appetite in the beginning, which has tapered off and is easily controlled by eating healthily - not hard to do when you're already on a gluten free diet. :) Everyone's body is different and not everyone reacts to medication the exact same way.

    Prednisone isn't and shouldn't be a forever thing, it is only taken to control flares.

    I can assure everyone that I would not, nor would my doctor - a man I trust implicitly after years of bad doctors - be taking this drug lightly. Nor am I cheating on my diet in any way, or should anyone use this as a cheat with celiac sprue - I simply was receiving very sporadic relief from the diet at first and the last 3 months + not at all. I am aware of the possible side effects and dangers of abruptly stopping - as should EVERYONE who takes this drug! Make sure you trust your doctor and have a good rapport. Consequences or none, I personally refuse to live out my life from bed anymore. Honestly, even the worst side effects are NOT guaranteed for everyone, but even if I get every last one I do not care at this point. If it buys me even a year of a real life, even at half the energy of a normal, healthy person I will be happy.

    I pray this medicine isn't one I will have to take for life, of course, but probably will at the very least on and off to control flare ups due to my RA and whatever this other condition is that is making me so ill/weak. My bones grind together painfully in my wrists and knee and I'm terribly sorry I waited so long to begin the prednisone. I could have prevented some serious joint damage that I now have to live with. But for celiacs who do not receive any relief from the diet alone and have ruled out CC, allergies etc, I think living with the continuing symptoms of celiac disease is insanity. Refractory sprue is something serious that must be looked into as well as other autoimmune diseases which can closely mimic one anothers symptoms.

    If you are still not feeling better - be proactive! Just because you have been diagnosed with celiac disease does not mean it is the only thing wrong with you.


  9. I'm curious about a few fertility studies I've stumbled upon online. My husband and I have been trying to get pregnant for 5 years, after going gluten free (blood test confirmed celiac disease) I unexpectedly conceived in June but miscarried (we'd given up it was possible). I've suspected in the past I was getting pregnant, but losing the pregnancies before they had a chance to progress to the point of dectection.

    A long story short, I have other autoimmune problems and have just begun prednisone and am finally feeling GREAT! (YAY!!!)

    I've read prednisone has helped women with autoimmune problems (who've had infertility/miscarriages) - sometimes using heparin or aspirin in conjunction with the predisone. I'd love to hear from anyone whose done this and if they had any success. I'm going in to see my gyn this Monday.

    My rheumatologist has told me it 'might' help my case. Here's hoping! For anyone curious here are two links I stumbled on with some info on the treatments:

    http://www.rialab.com/miscarriages_immunotherapy.php

    http://www.fertilethoughts.com/forums/view...?pg=medications


  10. I was diagnosed with celiac sprue back in June and felt some relief after switching to the diet (yes I am very strict and I have ruled out CC's/other allergies). Many symptoms never went away completely - only sort of fade in and out -, and about September all my symptoms started coming back with a vengeance - minus the constipation and trapped gas which were the worst of most my celiac problems. I had a positive test for RA, but on top of the debilitating weakness and fatigue I was still getting rashes on my face, hair was falling out, reynaulds, brain fog, and I was passing undigested food, nausea, short of breath...etc.

    I recently started predisone and I have never felt better. Minus a slight bit of insomnia I feel absolutely amazing. I have a lot of my energy back, my reynaulds is gone, joint pain and swelling is gone, no more brain fog, and my stools are returning to normal. My skin is also 'young' again. I just turned 27, but when I'd get sick I got large backs under my eyes, the rash and even the texture of my skin looked old.

    Except for celiac sprue, my blood tests are always negative for other autoimmune, thyroid etc diseases. I was wondering if anyone else here has had this problem? Anyone with refractory sprue? Or lupus? I can't find much info on refractory sprue, but I think it might explain some of my digestive issues that only now are clearing up with the prednisone. Can lupus cause digestive issues too?


  11. My closest friend and I are both retired RNs. When I was told I had celiac I did hours of research on the web and found that almost everyone contributing to a forum believes that minute amounts of gluten, as in CC, are important enough to avoid at all times. Issues like cutting my food on a board that is also used to prepare food with gluten, grilling on a surface with gluten residue, salad that has had croutons in or on it, or other CC in the kitchen due to using "contaminated" utensils are examples of encountering gluten in my "gluten-free" order are beyond my friend's comprehension. This is a lady who fully understands medical sterile technique, but if it ain't a germ she refuses to believe it can matter. I have an irritable bowel and have had it all my adult life (I am now 65) but it has never been as severe as sprue. I have been on a strict gluten-free diet for six weeks and don't see any improvement in my many symptoms that are considered possible expressions of celiac disease. If I were "glutened" in a restaurant I wouldn't know it so I am observing avoidance of CC on faith. I need proof in respected medical journals that minute amounts of gluten are harmful and must be avoided. My doctor was no help. I was told by an office nurse on the phone that I needed to see a dietitian and go on a gluten-free diet. Absolutely NO discussion of how to follow a gluten-free diet has come from my doctor or his staff. I learned everything I know from the internet. I haven't seen a dietitian because I am a nurse and I have found plenty of information on the net. Also, I have read that some people got very little help from the dietitian--all they received were some handouts and it didn't appear that the dietitian knew any more about a gluten-free diet other than the handouts. I don't know exactly what I believe because I have a positive transglutaminase and genetic tests but a negative biopsy. I am staying on the gluten-free diet because I am still hoping I will eventually feel better. For now, I avoid CC and my friend continues to think I am reacting to my diagnosis hysterically.

    So, if any of you have been told by your celiac specialist that CC is a big issue, or if anyone comse across a journal article of a double blind experiment to measure the importance of CC, please let me know.

    Thanks.

    I have had similar problems with family members not understanding the smallest drop of gluten hurts (despite every effort to explain I still get, 'oh just a bite of stuffing') - and that it hurts beyond an upset stomach, it absolutely debilitates me for weeks. They can't seem to wrap their heads around the fact it isn't an allergy let alone what an autoimmune disease is like. The sad thing is I've seen in a lot of newsclippings and articles it referred to as such - and people tend to think of sniffles when they hear allergy, sadly. Celiac disease is grossly misunderstood and not nearly enough is knowledge has been taught to doctors yet. I too received no help from the gastroenterologist I was referred to. :( What people did before the invention of this forum or internet is beyond me. I'd never have gotten well.


  12. I've read a lot on it as well. There have been a few times inflamation was mentioned. My periods have always been clockwork - different than your situation. My husband and I had been trying for roughly 5 years to conceive and less than 2 weeks gluten free I discovered I was pregnant. I did end up miscarrying shortly afterward. But I do tend to agree with the hypothesis that for whatever reason I was probably conceiving prior to starting the diet but losing them before it ever progressed enough to be noticed. I just stumbled upon an interesting bit of info the other day while researching side effects of prednisone (my doctor just started me on it - we have been suspecting other immune related disorders like RA and lupus).

    I plan on bringing it up to my doctor on my next appointment.

    http://www.fertilethoughts.com/forums/view...?pg=medications

    Aspirin/Heparin/Prednisone

    The use of heparin, baby aspirin, and prednisone may be suggested to help you achieve or maintain a pregnancy. Although there is little published evidence on the benefit of these medications (except in cases of recurrent spontaneous miscarriage and pregnancy complicated by preeclampsia), the premise is that the unexplained infertile woman may actually be able to achieve fertilization and embryo development but the embryo fails to implant. In that sense, they are having very early miscarriages. There are many theories on why this occurs: lack of blocking antibodies, the presence of autoimmune disorders that activate the immune system to over-respond and injure the pregnancy, the prevalence of silent hyperclotting states. We believe that patients with endometriosis, salpingitis isthmica nodosa, Hashimoto's thyroiditis, Raynaud's disease, lupus, rheumatoid arthritis, and other autoimmune disorders may initiate a response that makes a woman's blood more likely to over-clot.

    In infertile patients, blood flow in the ovary and uterine lining/endometrium is predictive of outcome. In other words, the ability of the endometrial to develop adequately to support a pregnancy determines whether or not the pregnancy will be successful. The use of low dose aspirin pre-conceptually (cycle day three and on) has improved pregnancy outcomes. Dr. Alan Beer, Chicago, has published improved pregnancy rates among women who suffer recurrent miscarriages using heparin, also starting on cycle day three.

    Infertility is associated with higher perinatal morbidity and mortality: three fold risk of stillbirth, five fold risk of preeclampsia, four fold risk of miscarriage, two fold risk of pre-term labor, and increased risk of intrauterine growth retardation. Current literature is beginning to pose associations of these complications with increased clotting and fibrin formation. Since 1993 we have suggested that the invariance among all these things may be fibrin deposition with vessel spasm and abnormalities in implantation and development of the placenta. This means there may be a hidden clotting disorder (s) that is unmasked during pregnancy and interferes with the maternal-fetal interchange. Excessive fibrin deposition is the most common finding of the placenta in these situations. If soluble fibrin monomer (SFM) in a non-pregnant state is greater than 40, the risk of stillbirth is 5%. In our experience of 8 patients who had SFM greater than 100, 6 achieved pregnancy and 4 of the 6 delivered babies between 30 and 34 weeks.

    Recent literature shows a direct connection with polycystic ovarian syndrome, insulin resistance, and increased net clotting. The defect, a deficient anti-clotting mechanism, makes normal clotting a problem. The end result is an elevated fibrin deposition. (A scab is made of fibrin.) It is our belief that elevated fibrin is also associated with many abnormal reproductive states.

    Over the past few years, there has been much interest focused on the role of nitric oxide (NO) as an enhancer of uterine blood flow as well as a mediator of blood vessel smooth muscle dilation in other areas of the body. Heparin increases nitric oxide that in turn leads to improved blood flow throughout the body: Hands are warmer and less blotchy and most of the thin endometrial linings we see improve. Because we have seen a significant number of women with defined clotting problems, heparin appears to address the clotting issues as well as the vessel spasm issues and improve pregnancy outcomes. Other medications that may produce increased nitric oxide formation include Viagra and calcium channel blockers (used to treat high blood pressure).

    Heparin, a naturally occurring substance produced from our blood vessels, helps maintain the blood flowing as a liquid. Given by injection (subcutaneous or intravenous), it is a large molecule that does not pass through the placenta. Excessive amounts of heparin, however, will prevent blood from clotting that can lead to bleeding. For this reason, heparin doses are monitored through blood tests (prothrombin time, or, PTT) drawn four to six hours after the morning dose and carefully titrated to keep your PTT slightly above normal. Short-term use of heparin is considered safe. Long-term heparin use, however, is associated with increased bone loss. Pregnancy is a bone-losing situation and heparin adds to that loss. As a result, the risk of a bone fracture is thought to be as high as 15%. The fracture could be as slight as a stress fracture in the hand or foot or as significant as a vertebral crush fracture as seen in elderly postmenopausal women. Unfortunately, taking calcium does not appear to reverse that effect. Another risk associated with long-term heparin use is a drop in circulating platelets. Platelets help initiate the blood clotting mechanism that blocks small holes in the vessel walls. If platelet counts drop, heparin will have to be discontinued and another medication considered. A drop in platelets, called thrombocytopenia, occurs in 1-3% of the patients on long-term heparin therapy and most often resolves spontaneously once the heparin has been discontinued. Heparin can also cause bruises and wheals to form at the site of the injection and an infection can develop if the injections are not done using aseptic technique.

    A daily baby aspirin has been shown to be effective in several disease states during pregnancy including preeclampsia and recurrent miscarriage associated with antiphospholipid antibodies. Aspirin, in conjunction with heparin, is used to treat women who have


  13. How many years have you been trying to live a gluten-free life? Started June 2009

    How often or many times do you think you've been hit with wheat? Probably once a month in small cc'd doses.

    Anyone been diagnosed with cancer, kidney or liver problems? Just got over a kidney infection.

    Have you ever said "what the hell" and just ate something you aren't supposed to?

    Yes, homemade pumpkin custard that I suspected might have been cc'd.

    What is your age?

    27


  14. I know that I'd been feeling the definite brain fog/zombie-like state thing every time I ate food containing gluten since March or April this year. But before that, I think I got "silent" or less obvious symptoms.

    In 2007, I had grand jury duty. Every day, they'd serve donuts. And I'd have one. And after having one, I got very tired and stayed that way throughout the whole session, even if I had plenty of energy before. Was that just the sugar or something in the donuts, or was I mini-glutened back then?

    In 2008, I used to eat lots of apples. Until they started making me hungry. A search on Google for "apples make me hungry" showed I was not alone. It was later discovered that celiac can cause fructose malabsorption, in which eating fruit (even a single grape was enough to cause the problem) can cause you to start craving sugary foods - other than fruit! (This appears not to be a problem anymore, so that part probably healed)

    Also in 2008, I was eating a lot of whole wheat bread, but over time, it seemed like the bread did a poor job of filling me up. I would go to it often because of its nutritional and fiber content, but it didn't seem to fill me as well as other foods did. Was that because of gluten? Come to think of it, other gluteny foods, such as macaroni and cheese, which I used to have a lot of in college, seemed to be less filling over the years than they were in the past. They just satisfied me for a shorter amount of time.

    So even though I started to suffer overt symptoms in or around March 2009, I think I may have been suffering "silently" before that, in subtle ways, particularly in the form of gluten foods not being very filling. It wasn't until I suffered overtly that I got to the "gluten makes me crave food" problem afterwards.

    Has this been your experience? Have you, in hindsight, noticed that you'd been having problems with gluten before it actually caused obvious symptoms? Was gluten-containing food unfulfilling before it became an active problem?

    I suspect I had a sensitivity to it through my teen years. I was lethargic a lot and had periods of time where I would gain a lot of weight and then suddenly my appetite would disappear and I'd drop it all, becoming a bit scary skinny. I had a lot of head fog too as well as bouts of constipation/diarrhea. I have enamel missing too that started in my teens. It was only in my early twenties that everything became a million times worse.

    I'd never heard or thought back to how certain foods made my appetite increase, but I do remember going through boxes of mac and cheese and, later after I changed to a mostly veggie diet, becoming ravenous - after eating apples in particular!


  15. Hi All,

    I'm fairly new to this site. Been to so many doctors with my daughter for 2 years and still trying to find answers. As you all are aware, it is so difficult to get a doctor to discuss nutrition and/or supplements. My daughter was diagnosed with Ulcerative Colitis and a liver disease 2 years ago. Since then the diagnosis has gone back and forth from Crohns to UC repeatedly. Tried every medication know for these diseases and sometimes five at a time. At one point she was taking 22 pills a day. Her white blood count is so low due to the imunosuppresents. I started to do my own research on Celiac since the doctors never tested her. The doctor she has now, just did some testing for the first time and it came back negative. From what I've been reading, that is not too uncommon. I have to believe that something must be going on in her body that is continuously aggravating her intestines. Why else would none of these medicines work after two years?

    We went gluten free almost 3 weeks ago. She has been coming off of some of her meds and her condition is stable which is a good sign considering at one point she spent a week in the hospital due to dehydration, extremely high fever and bleeding. It's so hard to tell if it is the diet or she is just responding to some medicines. I am a thorough believer that we have to heal the body, not just treat the symptoms and will do anything to help my daughter live an easier life. We're getting used to the gluten free concept.....although it can be a bit challenging to get what you need in your pantry to cook all your meals. Luckily, she loves to cook.

    My big question is this. Before we started the diet, she used to have blood and mucus (occasionally) in her diarrhea which has been a permanent thing for two years. Bleeding seems to have stopped, but on the gluten free diet, she has a lot of mucus and things seem to digest less. She went away on a school trip and had to eat some food containing gluten and she found that she had less mucus and more form to her stool. This just seems a little backward to me.

    I can't seem to find any answers as to what the diet does to the intestines that may be causing all of this mucus and is this a good thing or a bad thing. We don't want to stop since she has been sticking with it for so long now, but it just doesn't make logical sense to me.

    Has anyone had this reaction to the diet change? Are there any resources available to look into this since the doctors don't seem to want to acknowledge diet as possibly the culprit of her problem. I'm considering going back to the naturapth we saw about a year ago.

    Any help would be greatly appreciated.

    I used to get mucus in my stool as well, more so after I started the diet. My stool also seemed to soften a bit. I think it might have been due to a hemmoroid however, which has gone away over the months. I was chronically constipated before going gluten free and that is a contributing factor to hemmoroids. It might be worth checking? Hope she feels better.


  16. Sorry you are having so many issues. Some things to check for...have you had your ferritin levels checked? Celiac can cause all sorts of malabsorbtion issues and my ferritin levels were really low and it was causing all sorts of weird issues. Especially fatigue and it can cause hair loss.

    Your ferritin levels should be around 70 even though the normal range goes all way down to 20. Mine was at 7 and at that level I really felt bad. I was not anemic either, all my other bloods were good so you need to check for ferritn and not just the normal stuff.

    You should be on a good gluten free vitamin. (I take the Gluten Free version of Bio-35.)

    You also need to really be on a good dose of probiotics I have tried several and I have found PB8 to be the best but you might have to try a few until you find one your body likes. I'm also adding in Culturelle as well. Probiotics can make a huge difference.

    I also had H Pylori pretty bad and that was messing up my digestive track even more.

    My doctor told me that something like 70 percent of the immune system resides in the gut and if you don't heal your gut you get all sorts of other symptoms and problems.

    It can take a long time for things to heal up but you can do things (like probiotics) to help speed it up. I take 4 capsules of PB8 daily and it has really helped. I also completely cut out soda from my diet and it has helped as well.

    You could also try digestive enzymes as well to help the food digest better.

    There is also a good possibility that you may have some type of intestinal yeast overgrowth like candida. You could try adding in Candex for a few weeks to see if that helps. Yeast overgrowth can cause all kinds of weird symptoms and problems and getting rid of it is just part of healing your gut. If you have been on any antibiotics in the past it wipes out both good and bad bacteria.

    Hope that helps.

    I've never heard of checking for ferratin. I'll have to look into that. As for the rest I'm doing great today. :) I'll keep everyone's suggestions in mind though if the medicine I'm on doesn't do the trick.


  17. My mood is just starting to normalize. It was annoying how my mood would fluctuate wildly. Some days I felt like I had roid rage or bipolar disorder.

    In May '09 I was diagnosed with gluten sensitivity which quickly progressed to intolerance because I was having difficulty maintaining my diet over the summer. It was torture watching friends party and enjoy food and drinks I had to abstain from.

    At the end of the season I finally caved in to my cravings and over indulged at a large gathering. It happened during the time I had to stop the gluten-free diet to be tested to GI. The onset of arthritis and other autoimmune symptoms was so fast and severe, I thought I would die. Within days I returned to my gluten-free diet.

    It has been 3 months since that incident, and I am grateful to abstain from gluten products. Now, I view gluten products like toxic chemicals

    All the arthritis and autoimmune symptoms are gone. I'm in remission, and carefully monitoring my diet again.

    Hope you feel well soon.

    Ugh, I know what you mean. I always can guess when I've accidently cc'd myself (I generally don't get GI symptoms anymore). I get so moody - crying one moment and the next ready to tear someone limb from limb. I also get creepy crawlies under my skin which makes it hard to rest - the traveling itch you just can't scratch!

    I was (I thought) in remission as well (about 3 months), but I suspect now something more is going on with my immune system after all. I've started my autoimmune suppressants and within hours, immediate relief! I'm hoping this is it and not some fluke coincidence. My joints are sore today, but not quite so bad and I actually managed to read a book last night and hold it for a few hours straight. Normally this would have killed my wrists and fingers (and head)! I even have a bit of color back today. I'm crossing my fingers...


  18. Wow that sounds like a bummer. Im sorry to hear about your recent bout of sickness! I wish I had more to say that would be helpful but... MAN, that bites!

    A lot of people can sometimes develop other food sensitivities. In my experience, my thyroid is out of whack and until I got that under control, I was very tired, sick feeling, cold all the time. They also say that hair can start falling out and digestion can get funny again as well. If you can, I would get your thyroid function checked. It's an autoimmune thing, and is more common in those of us with gluten intolerances and other autoimmune issues. Good luck!

    Thanks. I'm feeling a lot better today. I started the predizone yesterday morning. I woke up feeling wretched, pale yellow skin, rash, achy joints, sick to my stomach etc, etc, but around 4pm it was like someone had flipped a switch. I had energy and a clear head! I can hardly believe it worked so fast. I'm feeling great today too. I'm optimistically pessimistic (hah) that it is the medicine. I've had sudden recoveries like this before and a day, week, month later I'm worse than ever again.

    I've had my thyroid checked a few times - I can't recall when the last was though. I've had so many tests taken I can't recall half of them. It was always normal.


  19. I was diagnosed with Celiac disease via blood work back in June, felt great for awhile, but am now back to how I felt before - if not worse. On top of celiac disease I've tested positive for RA. I also have endometriosis, reynaulds, and my rheumatologist and I are on the hunt - possibly for lupus. I've been feeling really overwhelmed. I stick to the diet and it doesn't seem to be doing me any good. I'm tired of being tired and sick of being sick. Recently my hair has begun falling out in nice handfuls and my stool is yellow/brown and the food doesn't seem to be digested. The gnawing feeling in my stomach is back and I'm nauseous all day. I'm also getting migraines and a bit of head fuzz (which I blame more on my total fatigue - I can barely make it to the shower most days). I've never had migraines before, the head fuzz yes, but never headaches! I generally get constipated when I get glutened. I've also noticed everything tends to get worse about the time I ovulate and around my period. I'm really at a loss as to what's going on. I've been so careful.

    I was wondering if maybe it could be ulcers left over from the disease? I indulged in two cups of coffee back in September and had one (alcohol) drink (at a gluten free restuarant) and that's when my digestive symptoms seemed to return (I'd been feeling tired previously). I got pretty ill from both, a lot of nausea and back pain. I'm grasping at straws. I begin predizone Monday and if that doesn't help me I might lose my mind.

    Has anyone else had ulcers? Or perhaps something similar? Anything! :(

    My husband and I desperately want to get pregnant, but I had a miscarriage in July after years of nothing and I know it is because something is still wrong with me.


  20. I have read that the wax coating they put on apples in the supermarkets can have gluten in them and to avoid eating them. I'm not sure if this is true or not, but since I don't dare buy from any place other than a local apple orchard I love. Once they're out of season though I'll really miss my apples! :(

    I also notice a coating of wax on turnips too, though again I'm not sure about the status there of gluten.


  21. I seem to encounter different opinions on this. I was wondering, for those of you who had more of a problem with constipation rather than D, after going gluten-free was this able to be corrected by going gluten free? And how long did it take for you personally to see some improvement?

    Initially when I first started having symptoms, I experienced D daily for months then it changed to mostly C.

    Thank you very much. :)

    It's nice to stumble across this thread as I read often about people having the big 'd' and rarely do I see the constipation. I was like you, bouts of D at first, and scattered here and there throughout, but mostly years of constipation - I was lucky if a laxative would get me more than a little...rabbit pile, for lack of a better way to say it. I'm only 2 months into this, but I'm pretty regular these days! Woo!! :D


  22. I keep hearing that about Qdoba but that was not my experience. I think it depends on the franchise. I looked on their website and they said they had soft corn tortillas, and that the hard shell corn ones could be cc'd from the fryer. When I went to the Qdoba (downtown Boston), they said the only corn tortillas were the hard shells, all of their soft tortillas were made from flour. This has been my experience at pretty much every "americanized" Mexican restaurant. Sigh.....

    I've gone to a few different Qdobas and haven't been glutened yet, even though all but the one with a fellow celiac working there gave me the 'your what' look when I told them I couldn't have gluten. I'm so addicted to mexican food I don't know what I'd do without them as I absolutely despise cooking. Maybe my success is in that I always get the naked burrito (almost always vegetarian) with the above ingredients?

    I have seen their soft corn torillas, but I'm not a fan of them so I haven't ordered any. The girl with celiac disease working their attested that she never had gotten ill from them though, but to avoid the items with barbecue sauce, even though it is stated by Qdoba as being gluten free it has made her ill.


  23. If there are any Qdobas around you they've been great to me (I need my mexican food fix)!! Just make sure if you get a corn tortilla that you don't get it steamed or pressed. They're regular chicken is safe, the lime rice, beans, salsa, guacamole, sour cream, cheese...that is generally what I have (naked burrito), but the girl who worked there, who just happened to be a fellow celiac, gave me a menu with all the safe items circled. Here are most:

    all Naked or with corn tortilla!

    Queso Burrito

    Poblano Pesta Burrito

    Grilled Veggie Burrito

    Mexican Burrito

    grilled steak

    grilled chicken

    pulled pork

    shredded beef

    grilled steak

    vegetarian

    cheese

    sour cream

    guacamole

    beans

    rice

    salsa

    tortilla soup - minus the tortilla strips

    I'm very gluten sensitive, a drop will make me severely ill, and I've been going there quite often lately without incident! Just make sure you mention you can't have gluten and that they change their gloves. :)