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Diagnosis After Age 60
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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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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.

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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:

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

richard

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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.

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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.

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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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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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