Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Diagnosised Ate Age 68


Karli

Recommended Posts

Karli Rookie

I went to the doctor because of a bad taste in my mouth. Thought it might be acid reflux. He sent me to a gastroent/specialist..... ( not on my spell list) I had an upper and lower GI and a small bowel biopsy as well as photos.... The specialist was certain that I had celiac disease but scheduled blood work for me anyway... The blood work confirmed that I do indeed have celiac disease.

I have been perplexed as to why and when and what triggered this autoimmune reaction in my body... Since I am a woman over 6 foot tall. I am pretty sure I was not effected by this as a child.

I had mono at age 17 and have joked that "I never recovered from mono"... now I am beginning to think that I was not joking.!!!!! (Mono causes extreme fatigue and mild depression.)

I have good days and bad days... my thoughts go back to a book or article I read about prisoners of war after WWII. The prisoners in the Phillipines were very malnourished when they were given a balanced diet after the war... their symptoms got worse before they got better...

New symptoms include... a loud digestive tract... I gurgle and gargle and make unusual noises at weird times... suddem nausea that passes very quickly....

After several weeks 'gluten free' I still have bad taste and dry throat which were my original symptoms.. the dry throat is much less now than before.... the bad taste seems just as often.

I read some posts by people in their 20 and 30s discovering they had celiac and wondering what took so long.... It seems there are many silent cases of celiac out there...


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kenlove Rising Star

I was diagnosed at 55. Read that 20% gets it around age 60, we were just early and late. I'm sure you'll get other detailed answers but your not alone. I never had any problems before celiac.

Ken

I went to the doctor because of a bad taste in my mouth. Thought it might be acid reflux. He sent me to a gastroent/specialist..... ( not on my spell list) I had an upper and lower GI and a small bowel biopsy as well as photos.... The specialist was certain that I had celiac disease but scheduled blood work for me anyway... The blood work confirmed that I do indeed have celiac disease.

I have been perplexed as to why and when and what triggered this autoimmune reaction in my body... Since I am a woman over 6 foot tall. I am pretty sure I was not effected by this as a child.

I had mono at age 17 and have joked that "I never recovered from mono"... now I am beginning to think that I was not joking.!!!!! (Mono causes extreme fatigue and mild depression.)

I have good days and bad days... my thoughts go back to a book or article I read about prisoners of war after WWII. The prisoners in the Phillipines were very malnourished when they were given a balanced diet after the war... their symptoms got worse before they got better...

New symptoms include... a loud digestive tract... I gurgle and gargle and make unusual noises at weird times... suddem nausea that passes very quickly....

After several weeks 'gluten free' I still have bad taste and dry throat which were my original symptoms.. the dry throat is much less now than before.... the bad taste seems just as often.

I read some posts by people in their 20 and 30s discovering they had celiac and wondering what took so long.... It seems there are many silent cases of celiac out there...

ShayFL Enthusiast

From what I have read in these groups, you are lucky they caught it at all.

The bad taste could be something unrelated to Celiac. You could have an overly acidic body. The way to remedy this is to eat lots off fresh fruits and veggies (mostly raw) and cut down on too many meats, coffee and definately sugars. You can also supplement with Ph drops in your water (which you need to drink lots of).

irish daveyboy Community Regular

Hi,

I was diagnosed at 57 yrs of age and I believe my trigger was

my cessation of smoking after 45 yrs.

.

Open Original Shared Link

.

6 months after stopping smoking, I went through 3 months of constant vomiting and diarrhoea where I lost 56 pounds.

.

I thought I was going to die, I honestly believed I had 'Cancer', thank God that was not the case.

.

David

munkee41182 Explorer

My cousin was diagnosed at 6, my aunt at 40-something, me at 20 and my grandmother in her mid 70s. My cousin was the first diagnosed and they never thought to test her because they thought that this was something that in "older women of Irish decent." When my cousin was diagnosed (this was almost 15 years ago), that was one of the thoughts because celiac didn't seem as common as it does now. Unforunately it rears it's head at the oddest times. Mine was 3 months before I turned 21 and all I kept saying prior to that was "i want a big a$$ burger and a big a$$ beer for my birthday" and guess who couldn't eat or drink my burger and beer....that's right the girl who just got diagnosed with celiac.

But as PP had said, you should be lucky that it was caught at all....and the bast taste might be related to medication?

Keep your chin up! This just means that you get to stick around for a while longer :-)

jerseyangel Proficient

I wasn't diagnosed until I was 49--I did have symptoms for about 20 years (mostly anemia and nausea), but doctors never mentioned Celiac and I had never heard of it back then.

I believe my trigger was a C-section I had at 29, although I had stomach problems, anxiety and fainting as a child that went away during my teens and early 20's.

A bout with the flu in 2003 was what put me over the edge, as I felt I never really recovered --I began to have horrible GI issues, persistant anemia (hemiglobin of 8), brusing, depression, anxiety, brain fog, tingling, numbness, and nausea. I had to quit my job at that point and luckily read an article about Celiac Disease--prompting a visit to a gastroenterologist.

I often wonder what the "true" trigger was for me, actually. For you, it sounds like the mono could have been it since you don't remember anything from your childhood that may have played a role.

It gets confusing sometimes, that's for sure--glad you found us and let us know how we can help you navigate your gluten-free lifestyle :) Welcome!

missy'smom Collaborator

If you feel like you never really recovered from mono, that very well may be your trigger. I can say the same about my first and only pregnancy/childbirth and my sister can say the same about the second of two surgeries that were close together. Those were our triggers and they are common ones. We can both say that we haven't been well a day since. We were both in our late 20's.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

I was a sickly child and thin. But plumped up in HS. Had a lot of fatigue. But that went away over time. My trigger was the birth of my daughter 12 years ago. Never the same since. :( And it is exactly the reason I only have ONE child. I wanted two. :(

mushroom Proficient

I was self-diagnosed at 67. Had always had some symptoms but they became much worse after a head-on auto accident at 49. People kept asking me if I had recovered from my accident and I said yes, but I wanted to say no because I didnt really feel that I ever did, and then I suffered a mycoplasma infection which made me really ill. By that time I had quit talking to my docs about my digestive problems because of the way they reacted and because I had other things to deal with. So it just took me a long while to come to grips with it.

My niece was diagnosed as celiac in her 20's after a bout of mono. It seems like there is usually a trigger which throws us over the edge.

Karli Rookie
Hi,

I was diagnosed at 57 yrs of age and I believe my trigger was

my cessation of smoking after 45 yrs.

.

Open Original Shared Link

.

6 months after stopping smoking, I went through 3 months of constant vomiting and diarrhoea where I lost 56 pounds.

.

I thought I was going to die, I honestly believed I had 'Cancer', thank God that was not the case.

.

David

interesting!? I was a smoker too but did not have similar problems when I finally was able to quite after umpteen tries... I did have drastic stomach problems the summer that I tried to quit using nicotine gum.... Then it was about 6 months before my system settled down...

jerseyangel Proficient

The years that I smoked (age 16-25) were the most symptom-free of my whole life. :)

Karli Rookie
I was self-diagnosed at 67. Had always had some symptoms but they became much worse after a head-on auto accident at 49. People kept asking me if I had recovered from my accident and I said yes, but I wanted to say no because I didnt really feel that I ever did, and then I suffered a mycoplasma infection which made me really ill. By that time I had quit talking to my docs about my digestive problems because of the way they reacted and because I had other things to deal with. So it just took me a long while to come to grips with it.

My niece was diagnosed as celiac in her 20's after a bout of mono. It seems like there is usually a trigger which throws us over the edge.

When the doctors asked me about foods that bothered me ... possible allergies... my list was 3 pages long.... 3 pages of foods and ( products ) that I avoided... when I look at the list now.... I can see that some of my "allegeries " were reaction to gluten... the oily after taste and digestive turmoil after eating baked goods was probably not reaction to oil but to gluten... like wise I can now trace my avoidance of fake dairy products to gluten... so in a sense... I had self-diagnosed too... but I did not have a name for it... I just kept adding " things" to the list.... in a way that makes it easier for me now... because I have spent the last 30 years being a "food dective"/

mushroom Proficient
The years that I smoked (age 16-25) were the most symptom-free of my whole life. :)

Me too (age 17-29)--well except for the chronic bronchitis and shortness of breath :unsure:

PeggyV Apprentice

Has anyone else had symptoms, only have them to disapear after several years? Then come back a few years later (often after triggers, birth of daugher, divorce, etc.) Also very small and thin until 16 then I finally grew.

Fiddle-Faddle Community Regular

Could the bad taste in your mouth come from mercury amalgams (the silver-colored fillings)? They can leak mercury, which is a horrible toxin, and can cause all kinds of bad things in your body, including (drum roll) gluten intolerance.

Another possibility is that the bad taste is acid reflux--which might improve on a gluten-free diet, but also might be a sign of a common bacterial infection called helicobacter pylori.

flourgirl Apprentice

As I look back I see many, many times that Celiac raised it's ugly head. Problem was, no one knew anything about the disease back then...at least in my corner of the world. I had chronic infections from infancy....kidney, bladder, ear, sinus. Until I was in my late 30's I could expect to have ear infections. I was tested for allergies as a child and reacted to every single thing. My otolaryngologist told me that my body was reacting to allergens by attacking itself!!! So close.....but still so far. Many times I had anemia (most of my life), and it was just considered to be normal for me...except when it got so bad I was one giant bruise head to toe. I had migraines and ulcers in high school....doctors advise was to learn to deal with stress and basically get over it! When I was pregnant with my son I was sick for 8 months. I actually lost weight for the first 5 months. I thought it was because I was working so many hours, and because of the severe nausea.

Through my 30's and 40's I was having a terrible time with inflammation of my joints and tendons (which since going gluten-free I have not had one incidence of tendonitis), on top of everything else. What finally caused the search for answers was a case of the flu that not only didn't go away but got worse. My doctor (a new one for me) thought I had cancer. Just when I reached a point that I could not function at all, I had a colonoscopy; and because I had such severe pain in my upper abdoman it was decided to do a endoscopy at the same time. Thank God, because I FIANLLY got a diagnosis....almost by accident, if you will.

I'll soon be 50, and for the first time in my memory, I'm feeling fairly healthy. I look forward to good health and peace in this stage of my life. If only I could get my family members to all be tested and get their own health issues under control.

Puddy Explorer
Has anyone else had symptoms, only have them to disapear after several years? Then come back a few years later (often after triggers, birth of daugher, divorce, etc.) Also very small and thin until 16 then I finally grew.

I was always told I had a 'nervous stomach' as a child. Remember alot of mouth sores, 10-12 cavities everytime I went to the dentist, always covered in black & blue marks. I had 2 really bad years at 16 and 22 with diarrhea and huge weight loss. At 22 I discovered I was lactose intolerant and that's what I attributed the diarrhea to at that point. I stayed away from milk and used Lactaid and seemed to be fine. Fast forward 30 years later and at 51 I went for my bone density test and physical and doctors discovered I had osteoporosis and severe anemia. After further testing my GI doctor diagnosed me with celiac disease - positive blood test, positive biopsy, positive gene test. So yes, my gastrointestinal symptoms disappeared for 30 years, but the disease was still doing it's 'work' on me.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - marlene333 replied to Grace Good's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Bee balm lipbalm not gluten free

    2. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

    3. - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

    4. - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

    5. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,261
    • Most Online (within 30 mins)
      7,748

    Pbaentine
    Newest Member
    Pbaentine
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • marlene333
      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    • Mari
      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.