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Diagnosis After Age 60


Chakra2

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Chakra2 Contributor

I read on an NIH webpage that GI symptoms are more common in childhood celiacs, while non-GI symptoms are more common in adult celiacs. I have a parent investigating celiac disease and that trend would fit. Would anyone diagnosed after age 60 be willing to share what your symptoms were? Since my parent doesn't have noticeable GI symptoms he or she (who doesn't trust Internet annonymity!) is wondering about whether or not celiac disease could really be an issue.


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burdee Enthusiast

I read on an NIH webpage that GI symptoms are more common in childhood celiacs, while non-GI symptoms are more common in adult celiacs. I have a parent investigating celiac disease and that trend would fit. Would anyone diagnosed after age 60 be willing to share what your symptoms were? Since my parent doesn't have noticeable GI symptoms he or she (who doesn't trust Internet annonymity!) is wondering about whether or not celiac disease could really be an issue.

If I would have waited for a doctor's official diagnosis, I probably would have been in my 60s, when I was diagnosed. However, I self-diagnosed at age 56. Then I did the Enterolab test panel which diagnosed gluten intolerance, casein intolerance, soy intolerance, positive Ttg (consistent with intestinal inflammation) and one of the main celiac genes. When I finally found a celiac naturopath, he agreed with my Elab results and 'officially' diagnosed me 2 years later.

Nevertheless, my self-diagnosis came after years when my symptoms were misdiagnosed as 'gastritis', IBS, malabsorption syndrome and even bulimia! So I suspect I had obvious celiac symptoms at least since age 52 after abdominal surgery, but I had lots of gastrointestinal symptoms, which were misdiagnosed for about 20 years before that.

So I think people can be diagnosed after age 60, especially if they find a doctor who recognizes their symptoms as celiac and will test them. However, many doctors still think celiac disease is a childhood disease and dismiss those symptoms as 'ibs' in middle aged people.

mushroom Proficient

You will see from my signature that I was over 60 when diagnosed (by me, not by a doctor - they had missed it all these years) and once I found out about the gluten I found out about all the other things. Previous generations have put so much faith in doctors; I had not put my faith in doctors and knew they were misdiagnosing me, I just didn't know what the diagnosis was :angry:

lovegrov Collaborator

My father had DH but virtually nothing else in the way of symptoms. Yet he was highly positive at age 70.

richard

Roda Rising Star

I work with a lady whose husband was just diagnosed about 6 months ago and he is mid 60's. However she said he has had symptoms for at least the past 30 years and was misdiagnosed with everything but celiac. He missed out on alot of school functions and trips because of his debilitating diarrhea. He was a truck driver and always kept plastic bags and a bucket with him on the road. He went in for another EGD and the doctor didn't like how his bowel looked so the took biopsy samples and then sent him for blood work. Both were off the charts positive. What I would like to see is that when people go in for an EGD that a small biopsy becomes standard. As of right now for the most part it isn't unless there is concern from the start. If that was the case he probably would have been diagnosed alot sooner. SAD, but now he is doing great and enjoying trips to visit the grandchildren without bathroom fears according to his wife. Also I suspect my father has it, but according to his doctor his blood tests are normal. He has a very distended abdomen despite his weight, has been on protonix for longer than I can remember, had an operation when I was about 8 for some bowel that twisted and became gangrenous, low vitamin D and phosphorus, neuropathy in his feet, and below normal low cholesterol. He takes so many various "pills" to fix all the "problems". He is almost 64. My mom's doctor (same one as dad) is sending her in for a 72 hour stool fat test because something was wonky on her last blood work. I mentioned to her to get retested (blood) for celiac too. She has arthritis and osteoporosis bad and it is progressing because she can't take any of the medications for it because of bad reactions. She is the same age as dad. My dad has had previous EGD's but no biopsy and mom has never had one. I think they both should get it done with biopsy. I suspect at least my dad's would be positive.

SaraKat Contributor

I am not 60 or even close (I'm 35), but I have no GI symptoms at all (except I have always been gassy- esp when I eat junk food).

My main symptom was that I had this nagging pain in my left upper quadrant near the lower left ribs. I was dx'd with costochondritis after having CT scans, XRAYS, and ultrasounds which all were normal. After the pain seemed to be getting worse I kept going to different Dr's (I've never even heard of celiac) and last week my rheumatologist did some random testing and it came back positive for celiac. Another symptom I missed- I have been iron def anemic for a while and never really knew why, I would take iron and it would go up, but the iron related levels (RDW, HCT, MCV, etc) would always be off, they never all went up to normal and my ferritin was very low (5). I had no clue this was all related. The rheum told me I needed to go to a GI Dr to have an endoscopy for get the official diagnosis.

I had my appt with him this morning. He told me that many celiac's don't get diagnosed until they are in their 50's or 60's.

What symptoms is she having? Is she anemic? I guess that is a biggy.

  • 2 years later...
tossy Newbie

I was 60 when diagnosed with celiac. I went to the dermatologist as I had a really wired rash. The Dermo biopsied the rash and called me and referred me to mayo to check for celiac. I could not believe it. So I have been eating gluten free and reading whatever I can get my hands on. Oh btw sure enough after lots of blood work and an endoscope I have celiac.


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    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
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      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
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