Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Develop Celiac Disease At 35
0

44 posts in this topic

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

1

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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

1

Share this post


Link to post
Share on other sites

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!

1

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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?

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.)

1

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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 :(

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!!!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,419
    • Total Posts
      917,670
  • Topics

  • Posts

    • Formal dinner suggestions
      You could take shrimp cocktail -- just ice it & no need for heating that then. How about following up with some coconut crusted fish with some nice veggies on the side? That could just be nuked to reheat & only takes a minute or two. Make sure when they put it in the microwave that it is covered in case there is gluten lurking on the ceiling of the microwave that can fall down into his food.
    • Formal dinner suggestions
      Hi people. I'd just like some ideas for what I can take for V to a formal family dinner. Unfortunately the restaurant has stated there is no gluten-free safe option so I have to take his meal and dessert.  I can make him gluten-free chocolate cake so thats fine.  But its a three course dinner, and I need to transport it there. Hopefully they will be happy to heat it if needed.  Something really nice and special would be good because everyone else will be eating really  nice meals.  
    • Italian pasta
      Get some celiac travel cards to print off and keep in your wallet.  Present them to your waiter.   http://www.celiactravel.com/cards/ Tell the airline that you need a gluten free meal, BUT take food with you because odds are the airlines will make a mistake.   As far as the wheat pasta.....some folks say the wheat is different.  I personally think they are kidding themselves.  There is no scientific proof that I have found to support this theory.  (Anyone want to present such data?)  Italy, from what I heard is great for celiacs.  I'll know for sure this summer!  I'll be there!   As usual, we plan on bringing some packable food, but we are good at shopping at grocery stores for food and picnicking when traveling.  I expect foods at grocery stores to be clearly marked as they were in Great Britain since they are part of the EU.  
    • Villous atrophy with negative tTG IgG/IgA, high Gliadin IgA!
      It looks like you have a few options that you need to consider pursuing: 1.  Get back to your doctor and tell him to figure out what's wrong with you.  Take a friend because it helps to have someone listen and take notes who is not the patient.  Get copies of all lab reports and doctor notes always and keep a file on yourself to share with future doctors or to monitor your progress.   2.  Ditch this GI and get a new one (SIBO is real per my celiac savvy GI).  Take a friend with you.   3.  You say you are lactose intolerant.  Experiment by going lactose free for six months -- not just a few days.  This will help to promote healing and help determine if milk (lactose or proteins) are causing villi damage and not gluten. 4.  Recognize that some celiacs test NEGATIVE to antibodies.  Per Dr. A. Fasano and Dr. Murrary, based on their clinincal experience and recent data just published, they estimate that 10 to 20 percent of celiac disease patients test negative to the serology screening test. That means consider yourself a celiac and stop your gluten intake for at least six months.  Normal vitamin and mineral levels do not rule out celiac disease.   5.  Recognize that you can multiple reasons for villi damage.  That's why a second consult with a celiac savvy GI is important.   Good luck!    
    • Continued Symptoms
      Try keeping a food and symptom diary.   She could have allergies or intolerances.  But, again, I am not a doctor!  I am healed from celiac disease, but I still react to certain foods and have allergies.  Those will probably never go away as I have been plagued with them all my life (as my siblings have too).  She could have a milk protein intolerance and not just lactose.  Eliminate all dairy too see if it helps.   Speech really normalizes by the age of 8.  I can not say if your public school will evaluate her.  My home-schooled friends are still monitored by the state and receive state funding.  So, I would assume they would receive all the same benefits.  Try calling.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,551
    • Most Online
      1,763

    Newest Member
    Cwilson2345
    Joined