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Develop Celiac Disease At 35
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Diagnosed at 55, after 2 years sick and three doctors.

Am convinced the "trigger" was this chain of events:

1) Got bad cold.

2) Went to Doctor, got antibiotics.

3) Cold got better, but got major bad GI problems.

4) Went back to Doctor, diagnosed with C-Diff., got powerfull antibiotics to fight C-Diff.

5) C-Diff cured, but GI symptoms, albiet milder than C-Diff, started probably a few months later and continued 2 years until diagnosed with Celiac by blood tests, endoscopy, and biopsies. Got miraculously better same day went on gluten-free diet.

best regards, lm

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I figured it out myself at 57. Had a horrible time last year. Super high blood pressure and all my teeth are gone. This happened all in a period of approx. 1 year. Avoiding gluten now for only about six weeks and have now stopped by high blood pressure medication. I am on the Gerson eating program. Dr. Gerson solved it all in the 1920's. It's all about diet. I wish I had known this earlier.

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Unfortunatly Celiac disease doesn't recognize or care about your age. Since it is a genetic disease it can lie dormant for many years until a "triggering event" sets it off. That is what happened to me and I am well past 35. The good news is you can manage it and it is getting better everyday with all of the many gluten free food companies that are popping up everywhere. Stay connected to this forum and ask your questions. There are a lot of knowledgable people on this forum that can help you get through this. Good Luck! :D

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I was diagnosed finally at 52. I am having a really horrible time figuring out what I can and can't tolerate. I am at the point where I would rather feel hunger than the pain of eating something "bad". It is a real battle, as you all very well know. It started with a carb-free diet last June, (but I know I have had it for years looking back). I was trying to encourage my daughter, 21, to lose a few pounds, and I needed to lose a few anyway. After 20 pounds I weighed less than I had in years and was very happy. Went back to carbs, and wow, it was awful. I have lost another 30-35 since then, and am still losing. Even some foods that are gluten free seem to bother me. I also have RA, anxiety, depression (which I am on meds for), psorasis, and many other obvious Celiac symptoms. Exhaustion, and my hair is falling out. I'm sure these symptoms are nothing new to most of you, but I am really getting discouraged. I ended up in the ER in December for the most excruciating stomach pain I have ever had in my lifetime, and last night it was almost as bad. The Dr. gave me pain pills, but I really don't want to be taking any more meds than nescessary. Does anybody else have stomach "pain"? And if so, what has helped alleviate it? I will take any advice! Thanks for reading!

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I started having severe symptoms at 36 but looking back I think I may have been some form of gluten sensitive since childhood.

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Thank you for the welcome! That is exactly what I am dealing with! I am taking liquid vitamins, liquid iron for severe anemia, and a high protein liquid supplement throughout the day to try to repair muscle damage. Also B12 injections.. I have been SO weak, depressed, and have very sore joints and muscles, so my lifestyle has taken a huge left turn over the last year. My guy friend was so disappointed that I didn't get a ski pass, but it isn't worth it! I bought one last year and skied one time. I need to get my body back! I sure thank you for the encouraging words.... I look forward to getting better and learning from this site..... Thank you!

I was wondering...do you have to lose weight in order to have gluten sensitivity or celiac disease?

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No, some gain quite a bit of weight because their bodies save everything, they are so starved of nutrients.

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I'm joining in--I find this thread rather reassuring. Good to know I'm not the only one wondering where the heck this came from.

I'm 23, graduated from college last May, got my first job this past September. New city, first apartment, first job (make that a super stressful job with a crazy boss) and a nervous stomach somehow landed me in serious pain for the few months leading up to my birthday. I had settled into work and figured it couldn't be nerves tearing my stomach to shreds every day like clockwork 20 minutes after I ate just about anything. Did a little research and went gluten-free the week before my birthday. I felt better within 24 hours. Hurrah! No way in heck am I ever going back to that way of life again.

(Thanks to all of you, by the way, for sharing your stories and advice. It's ever so helpful to hear about other people's experiences and to realize you're not alone.)

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Thank you for the welcome! That is exactly what I am dealing with! I am taking liquid vitamins, liquid iron for severe anemia, and a high protein liquid supplement throughout the day to try to repair muscle damage. Also B12 injections.. I have been SO weak, depressed, and have very sore joints and muscles, so my lifestyle has taken a huge left turn over the last year. My guy friend was so disappointed that I didn't get a ski pass, but it isn't worth it! I bought one last year and skied one time. I need to get my body back! I sure thank you for the encouraging words.... I look forward to getting better and learning from this site..... Thank you!

I think the vitamins and minerals will certainly help. I, too, have the sore muscles and joints and it doesn't help my piano playing at all because it's mostly in my shoulders and wrists. A bit of neuropathy, too. I'm a very active, multi organization volunteer person who was diagnosed with celiac only 4 years ago, when I was 73! Talk about surprise!! It was awful. I finally let go and went with the flow and tried to laugh about what symptoms would appear "tomorrow", I suffered from what I call "migratory" pains. Anyhow, that is slowly getting better but not being able to jump in and out of the car and get my work done is truly frustrating. Not eating various forbidden foods really doesn't bother me very much. Just my two cents worth. As you heal your gut, you will feel better!

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I got it at 28, my father at 68, my sister at 38, my niece at 1 and nephew at birth. Stress brought it on for me :(

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I was diagnosed with Celiac at age 28. I think it's a common misconception that Celiac only occurs in childhood, which is why so many people go un or mis diagnosed.

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It's funny, I am 46 and figured it out for myself after many years of being told I had IBS. So many different symptoms have disappeared or have improved I can't believe it. I don't even WANT my old favorites that have gluten.

But looking back, I also wonder how long I had this. I was very anemic starting when I was a child. And the IBS has been around for so long I forgot when I didn't have it. Now by eating no gluten I have not had diarrhea except a couple of times I ate things I didn't realize had gluten in them.

I don't even know what my trigger was.

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Ask your dr about iron IV. I was and currently am severly anemic and always tired. When my iron is low it feels like I have to use every ounce of energy to do ordinary tasks. With the iron IV my levels return to normal within two weeks. Much faster than the months oral iron can take. I am also on liquid iron to try to maintain a good level. It is amazing how my life can completely turn around within only to weeks. I literally felt like a new person!!!! Just got another IV today looking forward to feeling better. You may not need it more than once but I also have a bleeding disorder. My dr said it's a double whammy. Don't absorb it and can't keep it. Good luck and I hope you feel better soon!

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I turn 31 on Sunday, and just went gluten free. I'm 5 weeks in and feeling so much better. Looking back, there's been signs all the way back into my early teen years, but they were never an issue so I just overlooked it.

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I was 31 when I was diagnosed. I was largely asymptomatic, or so I thought. It wasn't until after I went gluten free that certain things I thought were normal (regular headaches, frequent random nausea, joint pain, fatigue) actually weren't normal and were caused by celiac. Looking back I'm nearly positive I've had this since I was 21 and had a severe case of mono.

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I'm pretty sure mine dates back to age 27 and the year 2001. I had two personal crisis surrounding the week of September 11th and I think the stress was too much for my body and activated the Celiac Disease. I had already had some issues (mostly migraines) but that was when I really got sick.

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I am 44, was diagnosed last August, I had symptoms for 5 years,but thought they were all realated to working nightshift and the stress of being a nurse. I think it would have been easier being diagnosed as a child. As an adult I miss so many things I used to eat.

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No, some gain quite a bit of weight because their bodies save everything, they are so starved of nutrients.

I am 35 as well and recently found out about my gluten intolerance...am hoping to get results back from endo this week regarding Celiacs. Anyways, I could not lose weight for the life of me, I gained 60 lbs after my daughter was born in 2006 and I couldnt understand why. I tried everything to lose it but it just didnt matter. Now, the weight is coming off like crazy. It is reassuring to know that some people do gain weight from this. I felt like such a failure because I was close to 250 lbs. I would explain to my doctor that I wasnt eating much and still gaining. She would look at me like I was lying and tell me to exercise more. It is so nice to finally have answers!!!

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Similar story here...

I've just turned 40 and pretty much that was when the celiac disease got triggered. I've always had symptoms I guess. I remember eating 4 slices of toast when I was a teenager after school and being unable to fight the urge to fall asleep. I've always had a troublesome stomach but just assumed everyone did and didn't complain as much as me :)

Then I got a massive infection, 5 months of antibiotics and BOOM I can't so much as look at gluten now. I'm fairly convinced it's the antibiotics wiping out my gut flora which did it for me. As is my neurologist. Annoyingly, my GP seems to think that my symptoms are unusual for celiac disease but from coming on this forum and doing a lot of research I know that it's very common. He put me on the wrong path for months imo.

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    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
    • 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.
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