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Hi everyone,

 

My name is Alannah, I'm 21 and I was diagnosed last week with celiac. I went in to my GP in November for upper GI pain. She thought it was my gallbladder, did a few tests, and sent me to the general surgeon. The general surgeon was, as expected, hesitant to take out the gallbladder without ruling out anything else so she ordered an abdominal CT and an upper endoscopy. The endoscopy showed inflamed stomach and duodenum, so the doctor took some biopsies. I received a call later that week that I had celiac sprue. After blood tests, it was confirmed. My biopsy showed a Marsh level 3c (total villous atrophy) and the blood test showed extremely high antibody levels.

 

I've been eating gluten free for about a week now, and I'm already getting relief from a lot of my GI symptoms, like bloating, pain, nausea. I'm really surprised how much it has helped already.

 

I'm still kind of reeling about the diagnosis, though. I don't know anyone in my family that has celiac and I never had any symptoms until 2 years ago. About 2 years ago, I had a major surgery, and my medical team has hypothesized that this could have been the physiological stress that triggered my celiac. I'm just surprised it got so bad in only 2 years! 

 

Now that I look back over that time, I can see some of the non-GI symptoms of celiac that were present. I had anemia after my surgery that took FOREVER to fix and a wound that didn't close for 6 months even though it wasn't infected or anything.

 

This post was just to introduce myself and hopefully get to know a few people a little bit. Does anyone else have similar stories? Or completely different? I'd love to hear them all. :)

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Hi everyone,

 

My name is Alannah, I'm 21 and I was diagnosed last week with celiac. I went in to my GP in November for upper GI pain. She thought it was my gallbladder, did a few tests, and sent me to the general surgeon. The general surgeon was, as expected, hesitant to take out the gallbladder without ruling out anything else so she ordered an abdominal CT and an upper endoscopy. The endoscopy showed inflamed stomach and duodenum, so the doctor took some biopsies. I received a call later that week that I had celiac sprue. After blood tests, it was confirmed. My biopsy showed a Marsh level 3c (total villous atrophy) and the blood test showed extremely high antibody levels.

 

I've been eating gluten free for about a week now, and I'm already getting relief from a lot of my GI symptoms, like bloating, pain, nausea. I'm really surprised how much it has helped already.

 

I'm still kind of reeling about the diagnosis, though. I don't know anyone in my family that has celiac and I never had any symptoms until 2 years ago. About 2 years ago, I had a major surgery, and my medical team has hypothesized that this could have been the physiological stress that triggered my celiac. I'm just surprised it got so bad in only 2 years! 

 

Now that I look back over that time, I can see some of the non-GI symptoms of celiac that were present. I had anemia after my surgery that took FOREVER to fix and a wound that didn't close for 6 months even though it wasn't infected or anything.

 

This post was just to introduce myself and hopefully get to know a few people a little bit. Does anyone else have similar stories? Or completely different? I'd love to hear them all. :)

Not uncommon at all. Celiac is genetic, yes, but that does not mean that everyone who have the gene(s) will get it.

 

That would cause celiac to occur.

 

Good thing is you caught it when you did. Some go for years without knowing what is causing their issues.

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Thats true, its good that you have found out early. ­Just cause you have the genes doesnt mean its definite you will get, environmental factors play a big part too.

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Hi Alannah,

 

I had mono when I was 19 and noticed my abdomen bloating after that.  I had symptoms before that, but afterward it really was undeniable.  Still I just thought I gained some weight which would not be unusual  at about that age.

 

I had 2 DQ2 and 2 DQ8 genes and yet had no relatives diagnosed with celiac!  I nearly died about 8 years ago.  I kept afloat these past 7 years by taking supplements.  However, it had been only 1 1/2 years since I got diagnosed with celiac disease!  I am feeling much better.  My nutrient levels went from low to adequate to high since last November, so I finally got some objective indications that I am healing.

 

I hope for you to continue seeing improvements and have energy for your young life.

 

D

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Hi Flutteringby :) Nice to meet you! I am sure glad you have the answers to your problems. My problems were severe "D" pain , bloating , I didn't even know I was bloated , I thought it was normal! But the pain was awful!! double me over pain! No energy, I was at my wits end!! I kept going to the Dr. They searched found diverticulitis, and that was it. I complained they took my appendix out, I complained they took my other thing out! I still had all my problems not one thing they took out helped!! So I had a really bad bout and I complained to my Daughters ! My Oldest said Mom you should look into Celiac . I looked and thought OMG that is so me!! So I made an appt. with my Doc and asked him to test me. He really didn't think it was Celiac. So I lied and told him my sister had it. He did the blood work. They called back said my blood work was fine. So I continued to eat Gluten. About a week later they called again and said I had Celiac. Not only do I have it but I also have the gene. So there ya have it!! Now I know what was causing my problems. Within days of going Gluten free I was feeling so much better!! My energy levels are slowly coming back . Good days and bad days yet , but better!! AMAZING!!! Absolutely Amazing!! :) 

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hey alannah! I am 21 as well and got diagnosed a year ago - just like you, nobody in my family has had it before. i had stomach surgery a few years back, and i kinda also think it might've triggered celiacs. im also pretty surprised it got bad so fast! two years ago, I was eating gluten and drinking beer like nobodys business. now, I get pretty messed up from just a little bit. still trying to learn a lot about it but it's nice that there's someone out there who is my age and going through the same thing! 

 

the biggest issue for my is being in college and still trying to do everything - go out to the pub, and all that stuff. which still I do most of the time, but sometimes I feel pretty shitty =\

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I think there are alot of people who perhaps have a triggering event that seems to initiate or worsen celiac disease.  I was like that too.  For me, my triggering event was a really bad fall on a sailboat.  When I fell I fractured my shoulder blade (scapula), my shoulder was really messed up for 2 years.  This event triggered all of my muscle and joint issues that I now know was part of my celiac disease and shortly thereafter all the abdominal symptoms started as well.  Although, this event clearly changed things, looking back I do know I had symptoms even before that.  w8in4dave - I understand what you mean when you say, I was bloated and didn't even know it.  That was me too.  I was bloated for at least 8 - 9 years before I was finally diagnosed.  I just thought I was getting older and spreading out :) so I bought new pants.  It wasn't until I was gluten free for about 3 - 4 weeks and now those pants practically fall off of me. 

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Hi Alannah! I'm 22 and got diagnosed roughly 2 years ago. I have a similar story to you and found out rather quickly what was going on with my body. The only big difference was that both my grandfather and father have celiac disease so I think in my case the gene was probably very strong. My story probably started after I got home from studying abroad (where I ate tons of bread) and I was feeling so sick and bloated on top of other symptoms. I honestly thought that I had caught a really bad bug at first and was following the BRAT diet to try to get better. Little did I know that was definitely making things worse. Thankfully I was able to see a gastroenterologist who did the blood work and an endoscopy within a couple of weeks which confirmed that I had Celiac disease. The first year is probably the toughest especially at our age where going out to eat and drink is the norm but it definitely gets easier once you find places that you know are safe.

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Hey Alannah! I'm 19 and was diagnosed 3 years ago, so I can understand what you are going through! Firstly, I must say you're quite lucky with the doctors that you have. Before I discovered that I had celiac disease, I was very very malnurished and was literally on the verge of dying. I've been misdiagnosed many times with the most rediculous things; one doctor even had the nerve to tell me that I didnt have anything at all- that it was all in my head! So my road to diagnosis wasnt the best, it was actually my mom who came up with the idea that I had celiac disease. Be prepared for a very hard year ahead of you, there are going to be some tough times. You'll also discover how sensitive you are to gluten. Some people have it very mildly, and will only get a stomach ache, whilst others like myself only need a crumb in order to end up in hospital in need of morphine to make the pain go away. But don't be too alarmed, dont mean to scare you! After a while it will all become normal to you :)

Best of luck!
Tess

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    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
    • So ok, I get the pain/bloating thing, but it still feels so crazy. But my god, I look 6 months preggers after dinner and 4 months the rest of the time. How long will this last?! I have not gained any weight but have to hide me belly now. I can hardly breath! Omg, that does take me back to pregnancy.  I had "acute marked focal duodenditis" a few weeks ago and an elevated DGP. the pain sometimes makes me seriously think I must be bleeding somewhere. It is actually worse then 3 weeks ago. Although many of the other glutening symptoms are finally vanishing. Even my mid and lower back is tender to touch. Sometimes it burns, aches or like someone is stabbing me in my side. My ribs hurt and everything is tender.  I am on protonix and fish oil. I have a prn for xanax which helps the pain (off market use for muscle relaxant).    I am fair skinned and notice a red under-the-skin discolored rash that comes and goes on my upper stomach. Sometimes it travels down one side. Not itchy. Almost like I can actually see the inflammation under my skin.  1) when will I stop looking knocked up?  2) Any other fair-skinned folks notice a purpleish-red rash on your bellies? It mostly goes away and comes back, which I tske to be a good sign. 
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