How Did You Acquire Celiac?

[Mieux7]

I was finally diagnosed last April after 6 years of misery - it's amazing how many of my "there's no reason you should be feeling that way" symptoms show up in this forum! My trigger was a hysterectomy, followed by Premarin, then a hospitalization w/ vertigo from an inner ear infection followed by a cocktail of Prednisone & Valium. Whew. Symptoms came on fast & severe, then I guess my body adjusted and I spent several years of just feeling icky all the time. I somehow got the idea that eating bread settled my stomach, so ate a lot of it & undoubtedly made matters worse & worse. I've been gluten-free for 10 months now (trying anyway - I never eat or use anything w/ gluten intentionally, but it sure is hard to catch everything!). The hardest thing, though, is that I'm still not feeling much better. I give my doc credit for diagnosing me, but he doesn't know much about the disease. My tests were inconclusive - biopsy yes, blood tests no - so he keeps telling me it's probably not celiac, to go back to eating gluten. But everything I read here sounds SO familiar. Since I'm new to this I'll poke around the forum until I get more educated - and give gluten-free some more time to work. So thanks for being here!

[jerseyangel]

Hi! Welcome in. Yes, there is a ton of good info. here. I predict you'll become addicted . When you said biopsy--yes, did you mean a positive biopsy? I believe a positive biopsy means you have it. Your symptoms would indicate that, anyway. My Celiac, I feel, was also triggered by surgery. Sorry you're still not feeling much better. Are you sure that you're 100% gluten-free? Have you checked your products, kitchen, meds., eating out, etc? Alot of times, we can miss something small but troublesome. I'd be glad to try and help you figure it out. Before I was DX, when I had to go out to a dinner or function, I'd always eat some saltines or toast to calm my stomach, and put on the gluten filled lipstick. You can imagine the results. So, I hear ya about the bread! The good thing is that you know now what the problem is. Once you get the gluten all the way out, you will begin to feel better.

[Rikki Tikki]

Hi Mieux:

I took me about three years to really feel good. I think because I had really severe symptoms for about ten years before I was actually diagnosed.

Like Jersey Angel said you might want to checfk to be sure everything including make-up toothpaste etc. is gluten-free

[Merika]

Hi Sally,

Ahhhh that makes me feel better. I am almost 2 years gluten free and still not completely better. It was a long 12 years of really feeling like cr&p before I got a diagnosis, add in a baby to that time, and my body was wiped out when I finally went gluten-free.

Mieux, I know just what you mean about getting used to feeling sick all the time. It's really really nice to feel better

Merika

[SammieMtz]

I didnt get my symptoms till about a year ago and it was when both my grandmas passed away and my best friend killed himself and my boyfriend of 3years broke up with me all within two weeks. i was a trainwreck and basically after that i didnt eat much and then when i started to i would get very sick and i told my mom and she thought i was like insane or something and so i went to the doctor and they did blood work for various things and nothing seemed to be the problem and i was on the net one day looking for myself and i came across celiac diease and i told my doctor and i got checked and sure enough i had it... that was about a year ago so its been difficult..... everyone else in my family has been checked and no one seems to have it... alot of my cousins and aunt and uncles have gotten checked as well and so far im the only one so its confusing i guess.lol

[Miko]

Hello to all of my new buddies...

Let me introduce myself... Wife & Mom ( of a baseball team) 40 yrs old, farmer, preschool teacher.

I have just been diagnosed with celiac disease. I really don't know where to start. I have always been on the large framed side of fashion- (5x5) , active, and ALWAYS have had a nervous stomach ( with alot of other diagnoses in my life- depression, narcoleptic, asmatic,bypolar etc. Last month I was admitted into the hospital for dehydration, (didn't eat for a week- lost 20 lbs). It took them another week to realize that my gulbladder was shot- ( another 20lbs lost). Then after 3 more days they took it out (gulbladder).

I was then told I had celiac disease. Thats it. I have been doing well on "trying" to follow the no wheat etc- diet. but am Very hungry!!!

I have lost a total of 47 lbs (since Novenber 19th 2005) and in my community there isn't much to help my with my new lifestyle.

If celiac disease diet can help me with alot of "my other" prob... I'm IN !!!

I am not one for taking medication and don't!!

Is there anyone who can help me be the healthier ME?

thanks Miko

[nettiebeads]

Hello to all of my new buddies...

Let me introduce myself... Wife & Mom ( of a baseball team) 40 yrs old, farmer, preschool teacher.

I have just been diagnosed with celiac disease. I really don't know where to start. I have always been on the large framed side of fashion- (5x5) , active, and ALWAYS have had a nervous stomach ( with alot of other diagnoses in my life- depression, narcoleptic, asmatic,bypolar etc. Last month I was admitted into the hospital for dehydration, (didn't eat for a week- lost 20 lbs). It took them another week to realize that my gulbladder was shot- ( another 20lbs lost). Then after 3 more days they took it out (gulbladder).

I was then told I had celiac disease. Thats it. I have been doing well on "trying" to follow the no wheat etc- diet. but am Very hungry!!!

I have lost a total of 47 lbs (since Novenber 19th 2005) and in my community there isn't much to help my with my new lifestyle.

If celiac disease diet can help me with alot of "my other" prob... I'm IN !!!

I am not one for taking medication and don't!!

Is there anyone who can help me be the healthier ME?

thanks Miko

Hi and welcome to the board!! The depression, asthma, bipolar and your gallbladder problems may have all stemmed from undx'd celiac disease, or maybe they caused the celiac disease. Anyhow, you are already on your way to a healthier you. But the problem is no wheat diet means you can still be ingesting gluten! You also have to eliminate rye, wheat varieties like triticale and spelt, no oats (I'll explain in a min) and barley and malt products as they stem from barley. Oats - an absolute verdict still has not been reached but this is the latest on oats: If produced in the USA by large companies (ie Quaker) they are almost certainly to be cross-contaminated and so avoid them like the plague (or gluten). There are some brands that can be ordered via internet and guaranteed to be free of cross contamination, but you may still have problems. The protien in oats is very similar to the gliadin protein that triggers the celiac response, and some people are sensitive enough to have a celiac response to oats. I'd hold off on them for awhile. I don't know where you live, but plenty of food stuffs can be ordered from the web. But, if you take your diet down the the basics - meats, veggies, fruits, it's not too bad and you can build from there. Hope that helps. Oh, and the hidden gluten - check your lotions, shampoos, cosmetics and such for gluten - usually wheat starch, but sometimes oats like in Aveeno.

Annette

[jerseyangel]

Hi Miko--In addition, I would say that the hunger you feel is common after going gluten-free. Your body is finally getting what it should from the food you eat and the hunger and fatigue are part of the healing process. In the inital stage of the diet, I tried to give in to what my body was asking for--eat when I was hungry (100% gluten-free, of course) and rest as much as possible. Be sure to drink a lot of pure water. Right after starting the gluten-free diet, I gained 10 lbs. in about 2 months. My Dr. was not surprised. Now, after 7 months, I'm better and am now going back and concentrating a bit on my weight. Right now, though, I feel you should focus on healing and checking everything you use and eat for the hidden gluten. Until it is all out, you won't really begin to heal.

[covsooze]

Wow, this is really enlightening! Had to look up 'mono' being from the UK...we call it glandular fever and I thought: wow! I've always thought I've not been 100% since having glandular fever at college. My sister who's also got celiac disease had glandular fever as well. My GI symptoms started at around the time I started using the Pill (but I also had a miscarriage at that time, so could be that). Everything has got much worse this year, when I've finally had positive blood tests. I had a c-section 2 1/2 years ago, so maybe that caused a flare up, who knows.

[Mieux7]

Hi again everybody! It's so good to have people actually listen to you when you talk about celiac and eating gluten free. Hardly anybody pays attention at work - I can't tell you how many times I've been told "hey there's cookies in the break room, go get some!" Someday I'm going to have to start (or find) a thread discussing how much accommodation you should expect from co-workers. But, another time.

Anyway, as for getting completely gluten-free - what a journey. The first thing I've been trying to do is figure out if there are any immediate recognizable symptoms if/when I get glutened so I can track what it might have been. So far the only thing I've come up with is I get sores (like canker sores) in my mouth. Last week, I swear it had to have been from the paper plate I ate off of. (I know packaging can be an issue, but sheesh.) I also had gone back to a soap I used to use thinking I was being ridiculous to be so concerned about cosmetics and stuff. Whoo boy that was a mistake, coz it was making me really sick. Once I went back to my gluten-free soap, I got much better (brain fog, nausea, etc cleared up). Experiences like that give me hope that one day I'll feel good again, once I can eliminate all gluten and give my body time to heal.

Question for you diagnostic experts: when I say "biopsy yes" it means that the villi were definitely flat. In fact, I got that diagnosis first after having my first colonoscopy w/ an upper thrown in for good measure. It was so bad the doctor could see there was a problem w/ the villi so did the biopsy, which was "positive". But as I say the blood test results were mixed. Is there anything else that could cause the villi to be flat? or does that definitely confirm celiac? I can't get a straight answer from my doc. Thanks!

[jerseyangel]

If the villi were flat, thus a positive biopsy, then you have it. I don't understand it when people say that they have a positive biopsy and all the symptoms that begin to clear on the gluten-free diet and still the Doctor is reluctant to give a diagnosis. Maybe I'm missing something, but that makes people anxious and worst of all, can delay the start of the diet which is the only thing that will help. The mouth sores, which can be caused by other things, are a symptom of Celiac and I also get them when glutened. I also use only gluten-free soap made in a dedicated factory because I had a reaction to a soap that was gluten-free but made on shared lines with other things. The symptons you describe were pretty close to what happened to me. You will feel good again--the time it takes for that to happen consistantly varies--but most of us see some improvement after a few weeks. There is so much info. here--you can do searches, read old posts and come on in anytime and chat or ask questions.

[Ursa Major]

When did I get Celiac disease? I believe I always had it. My grandmother (maternal) died of stomach cancer when my mother was 20 (coincidence? I don't think so), my mother died of liver cancer at 66, after being sick all her life (typical Celiac symptoms, which were never recognized because she was fat, unable to lose weight no matter what diet she tried).

I've been sickly from the start. I was known for being moody (happy one moment, unhappy the next, with a temper) from the time I was a toddler. Tonsils out at three, asthma ever since. Thin as a stick, pale and sickly looking in all my children's pictures. Always had alternating constipation and diarrhea. My mother tried to fatten me up all my childhood (doctor's orders), with lots of flour products, of course, which made me thinner! Terrible backaches from the age of 7, stomach aches, joint and muscle pains from the age of 3, depression from age 8. Awful menstrual cramps from age 10 (early onset of menses). Earaches, neuralgia, psoriasis, dizziness, low energy, always feeling unwell. Was considered neurotic, lazy, hypochondriac (who can REALLY have that many problems? Must all be in her head!).

Then, after getting married had eight miscarriages (and bled with every one of my five children, babies were never safe until after the fifth month of pregnancy). Gallbladder stones (gallbladder removed at age 40), had three c-sections, hiatal hernia, heartburn, severe anemia, hysterectomy to fix the anemia. Diagnosed with fibromyalgia in Feb. 2000, on codeine 24 hours a day for the awful pain from 2001.

Always bloated, lots of gas, more and more getting horrible, debilitating stomach and bowel cramps, migraines for weeks on end, constant headache, 'dizzy attacks' so bad that I couldn't move without vomiting, that could last several days.

When pregnant I would always gain anywhere from 35 to 45 pounds, being scolded by my doctors every time I saw them, telling me I should eat less (they didn't believe when when I told them I didn't eat much). I was unable to lose the extra weight, no matter what I tried (like my mother). I was gaining more and more weight, getting desperate, especially because my husband was getting disgusted with me for 'being a pig and eating so much' (which I wasn't, but he didn't believe me).

May 2005 I thought that maybe a liver cleanse might help (I never gave up on finding a cure for my troubles, but the doctors were clueless). But you can't start with the liver, because the flushed out toxins need a way out. So, I started a herbal bowel cleanse. Within a week I was so desperately ill with diarrhea and cramps and extreme weakness, that I was unable to eat anything for a week, just lying in bed. I was too weak to even get up and see a doctor (who I didn't trust anyway, they never helped me before).

I was ill all summer, eventually seeing a doctor, who ran a ton of tests, which all came back negative. She didn't test for celiac because I was still gaining weight, instead of losing, so she thought it couldn't be celiac disease, even though she admitted I had all the other symptoms. That made me angry!

Anyway, finally, one day I was feeling a little better, I ate a piece of rye bread, and was doubled over with agonizing stomach cramps, within minutes, and explosive D within 30 minutes. That's when a lightbulb went on in my head (a cousin's daughter has Celiac disease, and her mother had told me a little about it), and I looked up Celiac disease on the Internet, and found out that all my symptoms right from birth fit!

I didn't care about proper diagnosis, I had been at the point of suicide and was only just barely hanging on with counseling. I needed to get relief NOW and had no time to waste waiting for doctors any longer.

I went off gluten right then. The next day the diarrhea stopped, the following day the terrible backaches started getting better, and within two weeks I was off the codeine for the 'fibromyalgia' pains.

When I went to see my doctor and told her I have celiac disease, she just said, "Oh, I thought you had all the symptoms, but you were gaining weight, so I didn't think that could be it". I gave her an information session on several facts of celiac disease, including that unexplained weight GAIN can be a symptom as well. She took notes . I told her that there was no way I was going back on gluten to be officially diagnosed, and she told me there was no need, that the amazing change with the diet was all the proof needed, and she wasn't going to kill me by putting me back on gluten.

I dragged my unwilling youngest daughter (14) to the doctor's office to get the blood tests done (here you have to pay for them yourself ($130.00), because our government don't appear to believe in preventive medicine). I hope that the other four will get tested, but they are all grown, so I can't make them. I believe they all have symptoms, but won't admit it.

I am feeling worse again, and think that I might be intolerant to salicylates as well, leaving almost nothing left to eat (that includes ALL spices, fortunately that leaves salt, and ALL sweeteners, especially honey, fortunately, maple syrup is an exception).

Since stopping salicylates yesterday, I am starting to feel better.

Sorry this is a book, but being 52 and having been ill all my life, I guess you'd expect it to be a little longer.

So, the trigger to go into 'full blown', recognizable (at least by me) celiac disease was the bowel cleanse, that put me over the edge. And I'm glad, otherwise I'd likely have died of cancer within the next few years, like my mother and grandmother.

[kristi]

Mine started after getting vac shots and traveling to Central America. I got D there and took Cipro. I got home and was worse so they put me on more Cipro. Saw lots of docs and one put me on Flagyl. That put me in the ER. Haven't been the same since.

[Guest Pixi]

Very good question, I've often wondered how long I've had it.

As a child, I know I definitely did NOT have it. I ate tons and tons of gluten-filled food and I was always bubbly, healthy, gitty, happy.

Then, when I entered seventh grade, I started a long journey with disordered eating.. and that's when my body went haywire. Something around that time triggered Celiac.. it could have been so many things. Unfortunately, I only figured it out (thanks to a fantastic doctor) a few months ago.. after it had already done a lot of damage to my life =/

I believe mistreating my body caused the Celiac gene to "kick in" or something. Not exactly a medical outlook, but it's how I feel about the whole thing.

[natalunia]

I had mono in 1995, and had some GI problems since then, but nothing like the past 9 months. My husband and I caught giradia (intestinal parasite) while in Russia last June while adopting our daughter (who also had giardia). The giardia was treated, but the symptoms remained. Our GP tested my family for giradia again to see if it didn't get caught the first time. We all tested negative, but I was the one with symptoms that remained. I finally got fed up with getting sick every time I ate pasta, cake, etc., so I saw my GP again, and told him I thought I had celiac disease. He didn't feel confident in making that diagnosis, so he referred me to a GI. My GI said it does sound like celiac. My blood tests came back negative, but the GI said he bases his diagnosis on response to diet more than blood tests, since they can be negative. He wasn't even going to bother with the endoscopy. I did have a colonoscopy today (everything is normal) and he told me if I want a definite diagnosis, he can do the endoscopy if I want. I said, "No, I've been gluten free for almost a month, so I really don't want to go back on gluten." I told him even if I don't have celiac disease, I am definitely gluten intolerant/sensitive.

[Devsmom]

My sons was trigered by systemic strept bacteria/antibiotics. He was miss diagnoised & put on pennisilin for 1 1/2 years(thought he had sydenhams corea) He had high strept antibodies for almost 2 years. Both times they took him off pennisilin he got really sick. He would get sick while on pennisilin also. They finally gave him a double wammy of antibotics which kicked the bacteria out of him but he continued to be ill. That was 4th grade. After 15 doctors he found out celiac in 9th grade by the allergist, now 10 grader. I think I counted 60 symptoms in total.. A few remain. His growth was delayed, still alot of eye problems.

Before 4th grade he was healthy as can be. So I know he had his "trigger" then.

Devsmom

[slpinsd]

I now know I was born with 2 Celiac Genes. I believe I've always had problems with gluten. As a child I had what was passed off as a "nervous stomach". I would feel sick in the morning if I ate a peice of toast. I could never keep weight on. When I was 23 I started vomiting if I ate a lot of pasta. Pizza made me sick. I got tested for a "wheat allergy" but it was negative, so I stayed clear of pizza and pasta. One year later I became lactose intolerant. Over the next 8 years, I had bouts of weight loss, nausea, D, abdominal rumbling, dyspepsia, increased hunger, vertigo, and then horrible reflux that I was off and on meds for. Then later depression and anxiety, heart arrhythmias, peripheral neuropathy, candida, H. Pylori, and then asthma all leading to adrenal exhaustion--all caused by gluten. I finally figured it connected to food since the "anxiety attacks" only happened after I ate. A severe B12 deficiency was found, but my biopsy was negative. Substantial improvement from going gluten free.

[katrinamaria]

when researching/reading about celiac, i have often read that you "have it" your whole life but certain things (like chronic stress) can trigger enough symptoms to cause alarm. i recently "offically" have it and now looking back it makes sense. i've always had stomach & headaches, low weight, GI problems, all those weird things. then i started my freshman year of college, my parents announced they were splitting (out of nowhere after 25 years), i was lost in school, trying to be there for my family... just spread too thin--i think all that stress combined made my serious symptoms really appear. in a way i am glad, because now after following a gluten free diet, i feel better than i ever have.

[prinsessa]

I am pretty sure I got the gene from my mom's side. She is from Sweden and said that my grandma had GI problems her whole life. My mom also has some GI problems, but doesn't seem to want to go gluten free. I had some symptoms my whole life (like anemia), but didn't get GI problems until 2 years after the birth of my second child. Luckily I figured out what the cause of the problems where pretty fast (within 6 months). I thought it was lactose intolerance at first until my mom suggested Celiac. My blood test came out negative, but had very positive results from going gluten free (and got sick when I ate gluten).

[elonwy]

I've always had a touchy tummy, and was considered borderline autistic as a small child and had an "attention disorder", in high school it got much worse and I had serious behavioral problems. After high school I got hooked on "low carb" and felt fine for a number of years. I caught a flu on a plane back from Europe that turned into Pneumonia about 4 years ago and my symptoms got progressivly worse after that. I was diagnosed last August at the age of 27, but I believe its always been with me. I've never had mono.

Elonwy

[rsavage]

Hi,

I didn't really know where to put this but here it goes...

Just out of interest, I was wondering how everyone here acquired celiac...born with it? induced by illness/pregnancy?

Its been confusing for me to try and figure out how long I have actually had celiac disease and what actually caused it so I am interested to hear people's stories.

Obviously there is the genetic element, but I think I acquired it after food poisoning when I was in Belgium in Aug. 2004. The next day we travelled to Spain and I ended up in the hospital for 4 days there as, during the food poisoning, I got a terrible infection. Anyway, it is my belief that from my stay in the hospital there (where I was given very high doses of antibiotics and was in extreme pain) that I got celiac, in addition to external endometriosis. The doctors don't seem to want to ever help explain this to me. Its difficult to try and get answers when you have to see so many specialists and there is no communication going on.

Regardless, I think I'm pretty lucky to have been screened for celiac when I only complained of dizziness to a doctor at a drop in clinic at my school two months later. I think I only had celiac disease for those few months until i was diagnosed for sure by biopsy in April 2005. It is hard to tell though, because the previous January I would feel dizzy once in a while after exercise. Maybe illness sped up the process? It seems like my doctors don't consider the body as a 'whole' at all that is affected by everything, at least in my somewhat uneducated opinion

Anyway, please share! Thanks.

This is a really interesting question and one most of us can't really answer. I believe my mom had Celiac because she was always complaining about "gall bladder". My grand mother died from a gallbladder surgery so the connection is there. Both my sister and I are Celiacs. At least 2 of my 7 children have it. Only one that has been tested does not have the genetic component. I have had skin rashes and allergies since I was very small. They seemed to start around the time I had measles. I was always a "healthy kid" except I had allergic dark circles under my eyes. Around the time of my 4th child my thyroid quit working. At menopause, I developed arthritis and was diagnosed with a variety of ailments until one doctor gave up on me and her partner wouldn't even talk to me on the phone. Now, when did this start? Obviously, not when I was 58 and near death. Looking back I can see symptoms throughout all of my life. I just wish they had tested earlier. I would probably not be suffering with arthritis now.

[JodiC]

I just found out I had mono at some point in my life though I can't remember when. I think I had symptoms my whole life but only showed up when I was with grandparents and dad. My mom was an atkins fan and never cooked anything out of a box. I remember as a child wishing we could go to McDonalds, now I'm glad we didn't. Ended up with anemia at 12 and progressed from there. (I was living with dad not mom).

I spent too many years feeling sick as I wasn't diagnosed until age 29. Even at that I suggested to my doc that we test for this because I had been tested for everything else, why not this? In my opinion, we eat better than the general population. We have to eat food that is as close to nature as we can get it. After all, our bodies obviously recognize fruits and most veggies and not preservatives and all the junk they add to food now adays. Maybe we are not the ones who should say we have a disease?

[Lister]

i had no symtomes besides diareah on a off week basis, until i got the stomic flue about a month ago then i got really sick and still am not diagnosed celiac yet but its what my doctor thinks i have after finding folds in my small instines from a upper gi

[olalisa]

I began having grand mal seizures at age 8, for which a cause was never determined. The seizures stopped around age 18, and I had a period of relative good health, I guess for maybe 10 years or so. I have been plagued with a touchy tummy all my life, and edema which has gotten really bad the past 10 years or so, even with meds to control it. I hemorrhaged 10 days after a tonsillectomy in 2001 and almost died. I believe all these things were because of celiac/gluten damage.

The past few years symptoms have gotten worse, after a surgery and my mom and brother both dying (stressors, to be sure). It took serious anemia, lactose intolerance, muscle cramping and extremely dry skin and worsening edema and BEGGING the doctors to figure it out to finally get tested. They kept trying to tell me it must just be depression. I actually told them that if they tried to tell me I was depressed again that I would punch someone!

Tested positive on every marker and was biopsied, which showed completely flattened villi.

So here I am, week 3 of gluten free living. My color is coming back, the foot cramps have almost completely cleared, and the edema is resolving. Energy is up, and I'm learning so much here on this forum. You guys have been a godsend!

[klemmen]

this is a really interesting post.

i think mine got 'triggered' when i got pleurisy, before getting that ther only times i'd ever been ot the dr was for vaccinations, mum used to just call me the carrier because everyone else would get ill and i was always so healthy. That was when i was 19, a year ago, and since then i've never been healthy again lol. I guess my bodys making up for the overdose of good health i got