Getting Celiac At A Later Age

[McDougall]

I'm 38 and after reading about Celiac all day today am very excited about my gluten free diet which is 22 hours old (except I already messed up eating a gas-x which I found out is out). I have been very ill the last 6 years, progressively worse, and show nearly every sympton I have read about. I have alos had most of the misdiagnoses. It's pretty easy to pinpoint when it started, I had major surgery, Broke up with my girl and Lost my Mother in a few week span. I'm wondering about others who lived a very healthy active life until they turned 30 or so, I understand this is not uncommon. I was a competitive Athlete most of my adulthood and would run 20 miles and ride a bike 100 miles in the same day for fun. I have actually in the past wondered if my excessive athletics where the culprit to many of my problems. Anyway I feel like crap as always but dang I feel good right now, I got hope.

[baldridgem]

I think many of us have celiac loong before we are dx.

I was 59 before I started having severe adominal pain

and was dx as IBS. I'm 74 now. Its been 15 years trying to

figure out what I can or cannot eat. It's a relief knowing its mostely gluten

and maybe milk products. I'm having more tests done, I'll konw in a few weeks

MB

[darlindeb25]

my sister was 43 and i was 46 when she was diagnosed--we have been gluten-free for over 3 years now--we both realize now that we have been celiac since childhood--so many misdiagnoses in those years--there was apoint when my sister was so vitamin deficient that her doctor couldnt understand how she could even walk----at that point, they still didnt suspect celiacs--she was having iron transfusions weekly at a hospital before being diagnosed and the doctor doing the testing told her outright that he knew she wasnt celiac---- he appoligized big time when he found how bad she was--i think finally doctors are becoming more informed, so maybe so many of us will not have to suffer for so long anymore-- deb

[stef-the-kicking-cuty]

Hi there,

hope you feel better soon . I just wrote it in another post. But since still a lot of people don't know, it won't hurt to repeat it here. You have celiac since you are born. You can't just get it during your life. But sometimes the symptoms and the pain are missing, though you have it. Celiac has to be triggered. The two already known triggers are 1. stress and 2. a surgery.

It doesn't even have to be a major surgery. A small surgery is enough. I had only a little tooth surgery, not to mention. But my major problem is, i'm scared to death of dentists and what they do. The dentist was very unpatient with me and shouted at me and was very rough. It almost took him over an hour to put a filling into my tooth. He said, he gave me that much numbing stuff (i don't know the name in english. i don't think in germany they use Novocane. I think it's something else), it could kill an elephant. Well, that gave me pretty much the rest. I cried the rest of the day. I already started sobbing in the car on my way home. Then i wined around on the couch. And after the numbness started to go away, i went to the fridge. I remember that day till today. I stood there in front of the open fridge and thought: 'Why the hell do i still have pain in my face (and my guts)?' Then i closed the fridge again without taking something and laid back down. This pain stayed till this year. I thought maybe the dentist hit a nerve or something. But i was afraid to go back. I haven't seen a dentist for about 6 years now. I scrub my teeth like crazy. After every food, morning, noon, evening. I'm really paranoid.

Well, the end of the story is, that this dentist incident triggered my symptoms of celiac, which i found out now, 6 years later.

I'm also a very competitive athlete. And because of my symptoms I screwed up one of my major tournaments and some of the small ones. I always think, if i only would have known sooner. But now it's too late and you don't get younger. You just have to learn to live with it.

Well, i hope you get better soon. Stef

[Melinda]

Hi and congrats on the start of your gluten-free habits... don't feel bad about messing up, it will be the first of many trial and errors. But, that is what we learn from!

I was FINALLY diagnosed at age 34 - just this past February. I had years and years of misdiagnosis (irritable bowel, acid reflux, acne, hormones, post traumatic stress - that one I can't figure out, etc.). I finally found a doc that sat down and figured all of this was coming from one source - and within two appointments the verdict was in - I had Celiac disease. I've been gluten-free since and feel the best I have in my entire life. He told me that although I was a carrying the disease my whole life the major onset was during a very stressful point in my career and my father was diagnosed with cancer. I had spent a vacation weekend drinking beer, eating pizza, french bread, pasta and drinking lots of lattes with whole milk (I am also lactose intolerant because of the celiac disease). You want to talk about so sick you can't move? I also began losing my hair (alopecia areata) - another side effect.

Since changing my eating habits and reducing the stress I finally feel like I have my adulthood. Yes, I wish I had been diagnosed years ago, but it is better late than never.

Keep up the good work - it is well worth it. Watch out for those unsuspecting things (like ketchup) that have gluten in them. Now that I have been gluten-free for almost a year I can really feel the effects when I eat wrong (not on purpose).

Best of luck and again, congrats and best wishes - Mel

[McDougall]

Once again everything sounds like me. I had the same diagnosis Melinda (not the acne or hormones). I also have become lactose intolerent over the last few years and gave up dairy for the most part a year ago. My surgery and death of my Mom have always been the clear beginning of my problems but until now it was atributed to post trauma and stress. I'm feeling better with every passing minute right now though:-) I'm so happy. gluten-free 52 hours.

[FreyaUSA]

I blame my eldest for bringing on my symptoms. I was never the same after giving birth the first time . I have to say, for a traumatic event (there was a lot of scary stuff surrounding his birth) the outcome was worth it.

My father was gluten intolerant almost all his life, we know this because he and I had almost identical symptoms (from intense childhood headaches on through all the gastro complaints). I believe he didn't get hit with it full time until he was about 70 though, when all the wasting and such hit him big time. (If only I'd known then what I know now.) His doctors, there were literally dozens, never figured it out. It took an autopsy. It is amazing how much more is known in 2004 than there was in 1997 when it first hit him.

[hapi2bgf]

Hi and welcome!

Pregnancy kicked off all the fun for me. At 33 I finally had a diagnosis of Celiacs. The wonderful news is that a year after my diagnosis my Mom finally made the connection that when I was so sick as an infant and the doctor told her "my villi was flat" it was probably Celiacs. Nice to know that some things have changed in all that time. It's nice to see other parents here searching for what is going on with their babies and children. I am sorry that anyone has this disease, but it is nice to have a place to look for help. This board is a huge help!

Best of luck to everyone!

[darlindeb25]

from what i understand and from everything i have read--celiacs is with us when we are born--it may lay dormant for years and something triggers it at any time of our life--but, we are born with the gene--i guess we thank our parents for that my mom used to say--"sorry i shared the bad things just be lucky you dont have this bright red hair" i just have the red highlights---deb

[Melinda]

FreyaUSA - You said that your father was gluten intolerant almost all of his life - same here. Now that I've been somewhat thinking about my family's "health" I can see the hereditary connection. My father and his mother had terrible gastro complaints, severe heartburn and fatigue. My mother's father had the same and he died of intestinal cancer. All have passed away so there is no real connection I can make, but it really makes me wonder. I'll never know for sure, but it's just another strong reason for me to remain gluten-free! Thanks for sharing...

Mel

[Mosaics]

I was going to say the same as some of the previous posters did...you are born with celiacs, but it often doesn't manifest itself until you are much older. And it is usually triggered by an injury, trauma, or surgery.

I am 45 and was diagnosed about 18 mos. ago. Fortunately, I hadn't had a "trigger" and I didn't suffer for years with anything. My story of diagnosis is kind of long, so I won't tell it here, but suffice it to say, I found out we had celiac disease in the family. Knowing it is genetic, I had myself and my children tested. We all tested positive and are now gluten-free.

After going gluten-free, I have realized that I had mild symptoms most of my life, but I just didn't know I wasn't normal. Even reading some of the posts tonight (I'm new here), I have read a few symptoms that the posters have, which I have, but really never gave it a thought...such as dizziness, or a kind of "foggy" feeling. One of the things that really surprised me was finding out that the little flecks of white that I have had in my fingernails occassionally throughout my entire life are not normal. I thought everyone had them. When I read that they can be a symptom of celiac disease, I started asking friends if they had the flecks and they didn't have a clue as to what I was talking about.

[stef-the-kicking-cuty]

Oh, these flecks are related to celiac disease??? I always thought they are normal, too. Wow, awesome, no that you mention it i didn't have them for a while, but actually didn't realize it. Cool! What does that mean, when you have them actually?

Stef

[Mosaics]

I don't know exactly what it means. I just happened to be reading on a celiac diagnosis site and that was one of the symptoms it listed. When I mentioned it to a friend who also has celiacs, he said it was some kind of vitamin deficiency, but didn't know which vitamin.

[cdford]

It is my understanding that the white flecks occur as a result of a specific vitamin deficiency...I am just in a brain fog right now and can't remember which one. Sorry, but tonight is one of those nights when I am so tired I can't think but I also can't sleep. Apparently I can't type either because I had to try that last sentence three times before I got it right.

[cdford]

It's Donna again. I just had to take a few minutes and get my brain and fingers in order.

I was fully disabled at age 40 with all the complications that the endocrinologists, the internists, the rheumatologist, and the gastro doc could not figure out before my 11 year old daughter became so ill she missed a month of school. She was the youngest fibromyalgia patient either her pediatrician or her pediatric rheumatologist had ever seen. When the allergist saw that she showed strong immune diffiency and was also "allergic" to all the celiac grains, they all started putting two and two together. We are both now gluten-free for almost two years. She is off all but one medication and is beginning to lead a normal life for a 14 yr old. The damage was so bad for me that the best I can hope for is to be out of a wheelchair and using a walker at some point. That and some pain relief would be a blessing.

If I can encourage any of you to get your family tested early, let me do so. Don't let your family members ever get to the point where I am. Looking back we can now see that it went back at least three generations but no one knew what to look for. Now if I could just convince several in my family who are showing early symptoms but are afraid of the answer if they get tested I'd be doing great.

[FreyaUSA]

Donna, it makes me want to cry to read all the pain and suffering you and your daughter have gone through! I'm so glad they finally figured it out and you two are healing. Yet, knowing what you've gone through and where you are, knowing that you could have avoided maybe all of the debilitation, it must be incredibly frustrating that other members of your family are reluctant to be tested. Yet, this is so common! (I'm one of five kids and my siblings are doing the "I don't want to know because I couldn't give up blah blah" routine. I even have a sister who's son tested positive and she's doing the "It's impossible to do, so we've decided not to worry about it" thing. AAARGH!)

I'm very curious about what vitamin is the one causing flecks. I just looked at my fingers and, 9 months gluten-free, and I don't have even one! Totally, absolutely amazing. I've ALWAYS had them.

[Mosaics]

Cdford, several of my family members have celiac disease also. Some of them have gladly been tested. My younger sister, who has more symptoms than any of us, held out for over a year. She didn't want to know. She finally got tested and her blood tests came back negative. Now she thinks she's home free even though she was diagnosed with RA by age 36, has suffered from stomach "ulcers" since she was in high school, has terrible acid reflux, and many other symptoms. I still think she has celiac disease, but can't really say any more about it since she has a doctors diagnosis to the contrary.

Mom also has many symptoms, but tested negative. **sigh**

Frey, I don't have any white flecks any more either!