# IBS & FMS&hypercalicemia strongly connected to Celiac diease



## LoriAnn (Jan 31, 2002)

Hi everyone, I don't know if this subject has been covered before but this week I learned some startling things about celiac disease, I was researching abdominal pain when I came across this site, it blew me away.In one study 76% of FM patients on the diet for celiac disease showed improvement of symptoms, some dramatic improvement.Almost all of the posters on the message boards were first mistakenly diagnosed with IBS, and later found out they had Celiac disease, findings on the IBS-celiac study showed a significant number of people who were misdiagnosed, the conclusion of the study was that ALL people diagnosed with IBS should be screened for Celiac disease.There was also a study linking hypercalicemia although I confess I didn't actually read that oneI encourage everyone to please check out this site, read the posts on the message boards, they sound just like us, before they began treatment, most are showing dramatic improvement. And whats more there are tests that can be done to find celiac disease unlike our IBS & FM. I and taking this find very seriously, I have to, if I don't I will eventually starve to death, and I am so miserable from the IBS & FM that death is looking like a pretty good option right now.I don't think I'm grasping at straws, maybe I am, but if a straw is all I can get I'll grab on to it. Ten years of this #### is about all I can take. The site is www.celiac.com


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## LoriAnn (Jan 31, 2002)

PS I forgot to mention that there is also a strong link to CFS too. There are several case studies on the site.


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## Mio (Dec 19, 1999)

Hi LoriAnn,have you done an upper endocopy? I have had stomach problems since my teens but doctors told me that I had IBS and GERD. In 1999 I did an upper endoscopy and coloscopy and it showed that beside GERD I didnï¿½t had IBS after all but a uncommon IBD called eosionophilic colitis. The large colon looked good at first but when they checked the biopsies it showed EC. I was totally shocked by this because all doctors had told me that I had IBS...Iï¿½m now on a steriod called Entocort and I feel terrific! Anyway, when they did my upper endoscopy they also took a biopsy and checked for Celiac and I didnï¿½t had that. But I think itï¿½s very important to do upper endocopy or/and coloscopy if you have problems, I thank God that I finally got a chans to do it. My doc who did it said that there is many people that never do biopsys and therefor never get a proper diagnose./Mio


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## LoriAnn (Jan 31, 2002)

Hi Mio,I had a biopsy done 10 years ago, but all they looked for was H Prylori. My doctor has been trying to get me in to see a specialist for another one for the past 3 months. When I saw my GP on Thursday he was alarmed by my deteriorating condition and called the specialist from the office but the specialist would not commit to a date, we are desperatly short of doctors, he is the only specialist for 100,000 people, it can take 6 months to get an appointment and another 3 to get in. People admitted under emergency conditions get first priority. I do understand the situation, and I'm only 10 or 15 pounds away from being an emergency so I may not have to wait another 6 months. Its a disgrace that it should be this way but we have no other options. I was told I suffer from GERD too but it has not responded to any treatment, thats why I'm starting to believe its something else. In terms of the IBD, how is it different from IBS as far as symptoms go? One major difference I guess is that they can treat it, and they can find it.







nice to know they can find something if they look hard enough.


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## Mio (Dec 19, 1999)

Hi again LoriAnn,I really hope that you can do your upper endoscopy/coloscopy soon! I had to wait one year to get it and I hope that your GP can get you an appointment sooner, maybe he can explain how serious this is to them? I know how frustrating it is to feel like #### and you canï¿½t do nothing about it...when I got my diagnose (EC) I was, as I wrote, shocked (and angry at the docs that had told me it was IBS). But later when I found out that there was a medicin that made me feel better (for the first time in my life) I was relieved. My symtomps is major D, pain and sometimes fever. I could lose about 10 kg in two weeks when I had my D attacks from hell. Sometimes I had to run to the toilet 12 times a day and I couldnï¿½t eat anything. I canï¿½t eat everything now either, I must eleminate fat, but thatï¿½s ok. Iï¿½m a bit worried though that I have to take steriods all the time...Iï¿½ve tried to stop, but all symptom came back in a second. Luckily, this steriod is a new one and it has very few side effects, itï¿½s not like Prednisone.Take care, Mio


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## ERINSTANDAGE (Dec 11, 2001)

Okay, got a question... You do mean coloscopy and not colonoscopy? I just wanted make sure they were two different things. I couldn't go through with the colonoscopy last week, the prep drink was too much. Couldn't do it. PUKE!!! That stuff is awful! I just got off the celiac.com site also after stumbling across it and was shocked!! I really think that is what is wrong with me. Although I haven't tried gluten free diet yet, I hope to get some tests done asap to see if this is a possiblity. These other tests where they take a biopsy, they are down through the mouth right? Is the prep horrible for that, or is there any except fasting? Thanks guys, I would be so excited to find out exactly what I have so that I could maybe feel better!


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## Mio (Dec 19, 1999)

Hi Erins,sorry about that, itï¿½s colonscopy







. Itï¿½s a bit confusing sometimes to translate from swedish to english, and fibro fog at the same time...














As for biopsy to check for Celiac, itï¿½s through the mouth and there is no preps, just fasting...AND the preps for colonscopy is pretty disgusting, I spoke to a nurse and she told me how to make it easier. I drank the preps and a mouth of lemonade, preps, lemonade and so on./Mio


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## Feisty (Aug 14, 2000)

Hi Everyone!Had to quick post on this one.I had the Endoscopy done a little over a year ago for celiac sprue. It's done by mouth and the Doc put me under for it (or at least I don't remember it). Prep is clear liquids the day before and nothing after midnight. My Gastroenterologist explained the Celiac Sprue thing like this: The stomach lining and small intestine should have "little fingers" (microscopic) that the nutrients from the foods attach to and are slowly digested and absorbed in our bodies. When you have Celiac Sprue, there are very few to none of these "little fingers"----it shows up as a more smooth surface; therefore, the nutrients, etc. can't be absorbed properly and pass through your system at a faster rate. This is what causes the pain, diarrhea, weight loss, etc. If you have Celiac Sprue, it is a LIFE-THREATENING disease and immediate change in diet (to a gluten free) is necessary for survival.Fortunately for me, the biopsies taken showed I have plenty of "fingers", so it's not Celiac Sprue. But, wheat products do tend to make me bloat, and gain weight easily from them, so they are suppose to be consumed in small amounts. Well, You know how that goes!! A person is good for a while and then they fall into those bad habits again. I know I am going to have to make up my mind to go back to the "original plan"----and that was: eat only protein foods and veggies. No fruits or grains for a while, until the body can adjust and "catch up". The introduce a small amount of fruit along with the protein and veggies. And then perhaps in 3 to 4 months, introduce small amounts of wheat (or decide to stay away from them entirely I followed the Eat Right For Your Type diet almost to a "T" and lost 32 lbs. My skin glowed and my nails and hair were healthier. It's not an easy diet to follow at first because a person is so use to eating anything and everything, but it is a good diet to live by.I'm a Blood type O.Those of you suspecting Celiac Sprue type symptoms may want to find out your blood type and buy the book and follow the diet plan for your blood type. LoriAnn, this might be what you need.The book name again is:EAT RIGHT FOR YOUR TYPE by Dr. Peter J. D'AdamoIt should my bible and now I have to go back to it. I keep my book with my cookbooks---then I can refer to it when necessary. After a while you learn which foods are good for you and which ones aren't.Take care,Karen


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## LoriAnn (Jan 31, 2002)

Hi Everyone,Erin, a coloscopy is, I believe a biopsy of cervical tissue. I had cervical cancer about 10 years ago and I had to have one each month for a year. I can understand your confusion, (I was a bit myself at the time)Mio is correct in all the information.Mio, I hate to sound like an idiot but are you male or female? Just so I can say he or she.I go for my biopsy/endoscopy tomorrow. I'm not sure how well it will go over, had a bit of a scene at the hospital today, my doctor sent me over for a "pink lady" to numb my stomach and for an ultrsound but he didn't like the doctor who was on call and bypassed him, that made the attending physician furious and they refused to do as my doc asked, I got to be the victim of hospital politics, never got anything for the pain and its really an even longer story, so I will spare everyone more details than that (except my husband cursed at the nurse and doc that were there, and he NEVER swears). I haven't had anything to eat since Saturday, except for 4 arrowroot cookies and a bowl of Jello, so I shouldn't need any prep, I'm already fasting. I go through such agony every time I eat I just can't stand the pain, being hungry hurts less. I have lost 8 or 9 lbs since Thrusday.Please pray for me that they find something, if they don't I have no hope of getting better.Lori


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## Feisty (Aug 14, 2000)

LoriAnn,You are in my thoughts every minute.Take care and keep us posted, please.Love,Karen


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## Guest (Feb 19, 2002)

Dear Lori,I am so sorry to hear of all your pain, your ordeal at the hospital yesterday and your weight loss.And I fervently hope that these tests will show something that is treatable.You are in my thoughts.Love,calida


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## weener (Aug 15, 2000)

LoriAnn, you are in my thoughts and prayers. Please let us know how you are doing.


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## Mio (Dec 19, 1999)

Hi LoriAnn,you will be in my thoughts! I hope they find out whatï¿½s wrong today... I really know how depressing and painful it is to have stomach and bowel problems.Please keep us posted and let us know how you are./MioI almost forgot, Iï¿½m a 35 year old female.


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## LoriAnn (Jan 31, 2002)

Hi everyone, thanks for the support. I actually wanted to move this up the board a bit, for anyone who hasn't been tested for celia disease. Celiac can be life threatening if it goes untreated,so its important that everyone here either be screened for it or ask their doctor if they have been screened, lots of doc's don't tell you unless you ask.I started the GF diet this week and I am very much improved, still weak as a kitten from the weight loss but no pain and no Diarrhea attacks and the foods not bad, and some of it is great! I have also stopped reacting to milk! Big bonus! I have to give up somethings but I get back a lot of things I had to give up years ago, including my beloved CHOCOLATE!







I'm doing good and loving it, first time in many years. Many of my FM symptoms are disappearing, the vivid nightmares and insomnia are gone, I sleep like a rock! And I'm med free, also for the first time in 10 years, cross your fingers for me everyone, hoping I got it figured out this time and its not just a temorary remission!Lori


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## Feisty (Aug 14, 2000)

Good for you, Lori!!!!I'm glad it's helping.Now I need the determination you have to get back on that diet, also. The sad part about it is that I have to cook 2 separate meals. One way for me and something different for hubbie because he just can't/won't/doesn't want to eat those foods. It's so hard and boring that way!!Good luck with your Endoscopy tomorrow.Keep us posted.Karen


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## weener (Aug 15, 2000)

Lori Ann, just wondering how everything went yesterday? Hope you are feeling better, please let us know how you are doing.


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## LoriAnn (Jan 31, 2002)

Hi everyone,Actually I'm not doing that well. I had my endo yesterday and I was awake for it, it was a nasty experience. The GI didn't make a follow up appointment, told me to get my results from my family doctor next week, I was really upset about that because he said he would work with me until this was resolved. The freezing they gave me to swallow really set my stomach off again, and I'm still so weak, and to make matters worse, today I started to come down with a cold, which I don't need. I just generally feel really crappy. Its hard to believe a simple procedure could set me back so far. I'm really starting to think I can't survive this. I wish I had something positive to say, seems like I never do anymore, I'm sorry I can't seem to do anything but complain.Thank you for your prayers and good wishes.Lori


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## weener (Aug 15, 2000)

Lori Ann, two steps forward, one step back. YIKES!!! I'm sorry to hear that you are feeling crappy today. I can empathize with the endoscope. I've had 4 of them over the years and have to agree that they're nasty. I found the worst part was the spray they put in your throat. Reminds me of gasoline . Did they sedate you when they did the procedure? Hopefully, your family doctor will have some answers for you next week. In the meantime, take care of yourself.


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## LoriAnn (Jan 31, 2002)

Hi weener,I'm doing ok, I'm still alive at least. They did TRY to sedate me, but it wasn't working. I have problems like that. Like I had my last 6 teeth pulled without freezing because it wouldn't take after about 6 shots. I told him he was killing me with the needle and the teeth were aching so bad to just get on with it. I still have 6 very bad teeth that need to come out but I'm too afraid to go back. The endo, being awake was a nasty experience, one I would rather not repeat. How is the medical system in Ontario now? I haven't been there since 98. Its so bad here that when they did my EKG the girl said it was standard practice to have only a 45 second strip done to save on paper! Its disgraceful, I think I am for privatizing some of our health care, the quality of care has to improve in this country and the Government can't even run the post office effectively, but we leave them in charge of our lives and our health? its sick, literaly.I hope once I get past this cold I will be able to start getting back on my feet. Right now I'm feeling a bit














Lori


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## weener (Aug 15, 2000)

Lori Ann, did you say 6 teeth pulled without freezing? I can't imagine having that done without freezing. I ask the dentist to numb my gums before giving me a needle for anything. Is there anything they can give you prior to the teeth pulling? After reading some of the posts on this board, I think Ontario's medical system isn't too bad. I think the big problem was in the emergency depts. If you end up in a city hospital you can expect to wait a long time. Since they give priority according to your problem. I think the average wait for me to see a specialist was 6-8 weeks. I think it depends on how serious the problem is. My sis-in-law use to work for a doctor and she said even specialists keep a few extra appts. aside for emergency patients. I started seeing a new family doctor last month and it took me almost 6 weeks just to get in for a physical. I'm not sure about privatization of health care, but it looks like we are headed in that direction. The two tier system. I guess if you can afford to pay for it then you get first dibs. Over the past 10 years Ontario has lost many doctors and nurses. Many were fed up with the tax burden and being overworked. I guess the government and hospitals have to provide incentives for them stay in Ontario. Small towns have a big problem with doctor shortages. First, they have to entice the doctors to live in a small community and secondly, the doctor's patient load is quite high. Then they have to do hospital duty too. That's what happened with my old doctor he decided to leave because he was starting to get stressed out. He told me that in a couple of years 2 doctors from his medical centre were retiring and they probably won't find anyone to replace them. Can you imagine 2 doctors for about 20,000 people. So he got out before it got bad. I found a new doctor about 35 minutes from my home. Funny you mention the post office. My brother and stepmom (she's retired now) work at the post office. So I have to be careful what I say around them. You know all the post office employee jokes!!! I can get a letter from Saskatchewan in 2 days and other times it takes 7 days to get a letter within Ontario. When I use to work for a small town newspaper I discovered that mail goes to different sorting centres. I couldn't figure out why it took a newspaper 7 days to arrive to a town 20 minutes away. I could personally deliver it faster. The postmaster told me that the paper went to Mississauga sorting centre and then to Kitchener sorting centre and then from there to Arthur. Good God can imagine how many people handled that paper. As much as I like to b...tch and complain about our country, it still is a great country. Just needs some fine tuning. Hang in there and I'll talk to you soon.


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## LoriAnn (Jan 31, 2002)

Hi weener,I'm all for privatization if it lightens the burden on the public health system, no one should be denied health care ever, based on how poor they are, but right now even the wealthy are being denied proper care right along with the poor just to keep things fair. A system like New Zealand's would work much better for us than the American system though. Our hospital is an embarressment, doors hanging off the hinges, some missing completely, holes in the walls, holes in the bedding, you have to bring your own pillows if you are admitted, along with your own tylonal -even a hot water bottle. I feel bad for the people who don't have family or friends to go in and help them wash and be feed, especially the elderly. It would be better if everyone could at least get adequet care. I waited 3 months to see the GI and I was put through as an emergency case, if it had been cancer it would have sealed my fate, and it has sealed the fate of quite a few people here. Something must be done because people are dying, that shouldn't happen in a country like this.I'm thinking about asking if I can be sedated next time I go to the dentist, though its unlikely they will agree.As for me, I'm coping, just. Took a setback last week, and another yesterday, (shouldn't have had the gravy yesterday) but I'm alive and still waiting for the test results. Its all one hour at a time, I just wish I understood why.Lori


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## Courtney (Mar 4, 2002)

Oh Dear,At times we feel like giving up, were at a dead end and hopeless. I am 24 and been sick for years, a list that fills a page. Every time you feel like giving up think of someone you love standing in front of your casket. I have been there and determination helps. i also have bipolar disorder and maybe Celiac Disease, never give up on life! I have been at the bottom and worked my way up with hard work. You can to, never give up, I know what your going through, I have been there but please don't give up. Fight it anyway you can and if people don't understand and there not there for you, think of it this way: they haven't been where you are and don't know any better. You can win this, its within yourself. I feel sad for you and it brings back tones of memories but you are worth fighting for, even if it means doing it alone because I did and Im proud that I did and you can be to. If it get so bad see a therapist or psychologist and don't be ashamed to, its the strong people who are fighters who nerve it up to go. Just hang in there, one day at a time. Good Luck!!!!!!


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## LoriAnn (Jan 31, 2002)

Hi everyone, just wanted to give an update.My doctor has agreed I have a gluten sensitivity. I am slowly getting better on the GF diet, many of my FM symptoms are also showing improvement, the headaches which have plagued me for years are almost gone, my jaw has stopped aching and alot of my general aches and pains are gone, I'm sleeping without meds and don't have the vivid nightmares that plagued me all my life, I'm not perfect but I was very sick and I don't expect an overnight cure. But in just the last two days I've gotten much better. The whole family has started the GF diet to support me, the kids actually like it. But my daughter, after 2 weeks gluten free, took a half a cookie from a friend and within 2 hours she was covered by hives and a nasty rash, so this diet may prevent her from ever becoming as sick as I did, I pray I'm right. Sensitivities are also inherited. Just wanted to let everyone know.Lori


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## LoriAnn (Jan 31, 2002)

I just had to post again, I had a weird experience last night, I told my husband I felt strange.....after a couple of minutes I realized what was different, NOTHING hurt, no muscle pain, no joint pain, no headache, no stomach cramps, absolutely no pain, that has never happened before. This morning I woke up and had such a feeling of well-being, I have never felt so good in my life! (knock wood)I just had to tell someone.Lori


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## Feisty (Aug 14, 2000)

Lori,Glad to hear you're feeling better. That GF diet must be working for you. I'm so glad. Now if only you can get some answers to that heart problem of yours. Any word on the appointment with the Cardiologist and that 24 hour monitor your Doc said you should do?Take care.Karen


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## Guest (Mar 10, 2002)

Lori wrote:"This morning I woke up and had such a feeling of well-being, I have never felt so good in my life! (knock wood)"Oh, Lori, I am so delighted to read that.







I'm knocking wood with you and hope you continue to improve every day.calida


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## LoriAnn (Jan 31, 2002)

Karen,No word about the appointment but I have to try to stay off line during the day so I don't miss the call.When are they laying the carpet, monday?Calida - thank you so much! You are a sweetheart.Lori


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## Feisty (Aug 14, 2000)

Lori Ann,They will be here by 8 a.m. and will hopefully replace all the carpeting in the bedrooms and closets and down the hallway tomorrow (Monday). Then we have to move all the furniture back into those 3 rooms so that they can replace the livingroom carpet on Tuesday. Monday night we will be busy moving the bedroom furniture back in and the livingroom furniture out. What a fiasco!! Hopefully the carpet replacing it will be done efficiently with no problems this time around.Karen


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## joey (Sep 7, 2000)

I HAVE A DUMB QUESTION: CAN YOU HAVE A GLUTEN SENSITIVITY WITHOUT HAVING CELIAC SPRUE? I SOMEHOW THINK THIS DIET WOULD WORK WITH ME.JOEY


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## LoriAnn (Jan 31, 2002)

Hi Joey,If I understand my research correctly then yes. There seems to be different categories (according also to my Doc but he is a bit of an idiot), celiac, celiac sprue and refractory sprue. The first one is gluten sensitivty, the second is GS with intestinal damage that can be repaired with diet, and the last is where the damage is so severe not all can be repaired with diet.According to the mayo clinic, about 40% of Celiac diagnosis are missed even with the biopsy, because samples were taken too close to the stomach, or the celiac damage is in patches and the sample missed the patch.You could email me directly if you have any more questions, I would be pleased to tell you whatever I can or you could check out www.celiac.com, go to the bottom of the first page and click on links, there are some great links to reputable sources, like the Mayo Clinic, Columbia University etc.Also, according to a research study posted on the site, 76% of FM's treated with the GF diet showed improvement in their symptoms, some dramatic. Hope this has been of some assistance to you.Lori


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## LoriAnn (Jan 31, 2002)

Has joey been here since he posted here last week, just wondering if he got my reply.Lori


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## LoriAnn (Jan 31, 2002)

dahhhh, now I feel like an idiot, his post right there







Lori


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