Just found out :(

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
dlerner
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Re: Just found out :(

Postby dlerner » Fri Mar 01, 2019 1:09 pm

Thanks I will do that. Interesting, I am a celiac carrier. Also just found that out through 23 and me. Haven’t focused on it or read much about it as the APOE has dominated my thoughts. Wonder if there’s any connection. Probably should learn more about that.

JudyH
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Re: Just found out :(

Postby JudyH » Fri Mar 01, 2019 6:58 pm

dlerner wrote:Thanks I will do that. Interesting, I am a celiac carrier. Also just found that out through 23 and me. Haven’t focused on it or read much about it as the APOE has dominated my thoughts. Wonder if there’s any connection. Probably should learn more about that.


Celiac Disease is in the family of autoimmune (AI) diseases. I come from a family with autoimmune diseases in our history. I have 3, my older brother 5 (including PSC which lead to his liver transplant that saved his life) and my younger brother 3. As AI diseases seem to run, we don't share most AI disease just the tendency to have them. Hashimoto's hypothyroid disease are the only one all three of us share and my brothers were diagnosed in their 20's and me in my 40's.

Autoimmune diseases tend to be very inflammatory. So I have to wonder about their connection to this gene. I would also think managing all your AI disease helps reduce inflammation in the body which can only help in the battle to avoid AD.

As far as your genetic link to Celiac Disease, it is very telling in the negative sense. If you do not have the genetic link it is very unlikely that you would ever get CD. If you do carry the gene, it in no way means you will get CD. But I have known more than one person that has zero symptoms and still has CD. No rush but I would ask for blood testing relating to the screening of CD which is what I am trying to get my sons to do. It looks for the antibodies that the body develops as it attacks the small intestines. The main risk of undiagnosed CD is cancer of the small intestine as well as the development of other AI diseases.
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No family history of AD, they drop dead of heart attacks in their early 40's!
Celiac and Hashimotos

NF52
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Re: Just found out :(

Postby NF52 » Sat Mar 02, 2019 6:24 pm

dlerner wrote:My husband and I just got our 23 and me results. His dad had alzheimer's so we were concerned. Surprised to find out I have one APOE 4 variant and he has none. Not what we expected or I was ready for. I'm very proactive and have been reading alot which is how I found this site. Just introducing myself. I'm 57 weigh 118 and am in really excellent shape and exercise all the time and eat well.
Would be interested in clinical trials. Have read about ones that try giving A2 to people who have A4. Anyone know anything about this? Any thoughts or advice appreciated. Just starting to get my head around this. Only found out a few hours ago.

Welcome dlerner!

You have received wonderful support and advice already, proving once again what a great community this is! So I will add just a few tips and also address your question on clinical trials.

First, the fact that your found this forum only a few hours after you got your 23& me results suggests to me that you are proactive, with a resilient and positive mindset and ready to be the captain of your own voyage. If you haven't found a reference to "cognitive reserve and resilience" you will soon: along with prioritizing sleep, managing stress (give yourself permission to not work on that for a few weeks!) and exercise, using your cognitive skills seems to add years of brain health.

Like you, my husband is ApoE 3/3 and yet his mother had what was probably a mixed dementia (vascular and Alzheimers) in her mid-80's, and died at just about the same age as my mother, who was at least ApoE 3/4. Advanced old age is itself a risk for dementia, so in this case "what's good for the gander is good for the goose!" At your current age and weight and health, you have banked lots of brain health during crucial years!

As for the clinical trials, I believe NYU has a very small "proof of concept" trial to see if people with diagnosed Alzheimer's disease (AD) show a slower progression of symptoms when injected with a harmless virus that carries ApoE 2 to their brain. I assume this is being tried with people with AD because the safety and efficacy (benefit) are unproven, and this would be equivalent to a trying a new cancer drug on someone with metastatic cancer who has gone through other treatment options.

However, there are clinical registries seeking to enroll people who may want to participate in observational studies (not taking a specific drug or treatment), online studies and prevention studies.

Here's some links you may want to reference:
Together We Make the Difference! Participate in Alzheimer's and Related Dementias Clinical Research is from the National Institute on Aging (a division of the National Institute of Health
Learn About Clinical Studies is a helpful NIH website, with a tab for searching (try Advanced Search to find studies near you, or of certain types.)
GeneMatch is sponsored by the Banner Alzheimer's Institute and sends a cheek swab for DNA testing, then notifies you of studies for which you may be eligible.

For tips on how to quote users so they are notified of your reply, how to "search" and "subscribe' to topics, and how to check unread posts, see the "How-To" Get the most out of the ApoE4.info website

And on the topic of telling your adult children, here's a forum thread with lots of views:
Tell my children or not?

Please keep posting; we love to meet new friends. Hugs from a healthy and happy 66 year old with ApoE 4/4!
4/4 and still an optimist!

dlerner
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Re: Just found out :(

Postby dlerner » Sun Mar 03, 2019 4:47 am

Wow
I am overwhelmed by the incredible support I’ve received from those of you who have responded. That strangers have taken the time to write me such detailed, informative and supportive replies I find truly remarkable and unbelievably touching. I can’t thank you enough. I followed Judy’s suggestion and by looking at my raw data and the interpretive link learned that I am a 3/4. Although that isn’t surprising there was a part of me holding out hope that I would be a 2/4 which in my mind averaged 3 and would have made things so much better. Oh well. Are any of you familiar with the ADDF. The Alzheimer’s Drug Discovery Foundation? There are so many Alzheimer’s organizations out there. Are you involved with any of them and do you attend any of their functions? I’ve expressed my interest in clinical trials which you guys have given me information on. Do you guys participate and what do you think about them. I am going to spend some time reading about telling my kids but for now have decided that until they ask I’m going to stay quiet. Unfortunately we told them that we were taking the test. You would think they would ask but we will see. Going on a trip with them next week. I’m very nervous about that as they both had mixed feelings about us doing it. Have any of you gone to a geneticist for blood work or to be monitored? What are your thoughts on that? Again I can’t thank you guys enough. One last question (for now :) ). What have you done about sharing this information with your friends?

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Re: Just found out :(

Postby slacker » Sun Mar 03, 2019 7:23 am

dlerner wrote: Have any of you gone to a geneticist for blood work or to be monitored? What are your thoughts on that? Again I can’t thank you guys enough. One last question (for now :) ). What have you done about sharing this information with your friends?


I am not an expert on the professional role of a geneticist, but am not sure that they order blood work or perform any kind of monitoring. Here's an explanation I found from a google search.

As far as sharing information with friends, I think that depends on your intention and personality. As the old Chinese proverb states, "Once spoken, words run faster than horses." If you have a close friend who you trust to keep your information confidential, and is comfortable listening without telling you what to do, sharing information may be helpful for you.
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mike
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Re: Just found out :(

Postby mike » Sun Mar 03, 2019 6:04 pm

I myself work for government and I'm close to retirement. I've chosen to share with my co-workers, since that way I can talk about the research I've been reading about...
Last edited by mike on Mon Mar 04, 2019 10:01 am, edited 1 time in total.
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JudyH
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Re: Just found out :(

Postby JudyH » Sun Mar 03, 2019 7:33 pm

dlerner wrote:Wow
What have you done about sharing this information with your friends?


For the most part, I am keeping quiet about this until I learn more. I live in Michigan and am headed to warmth and FL at the end of the week to visit my closest friend and her husband who is also a close friend of mine (I introduced them to one another). I plan to tell them because she will notice the change in my eating habits! Also she is a great person to bounce my concerns and thoughts off of. But in general. I am not ready to tell other people until I learn more about my own risk and plan for the future. Too early for me (Dec 2018), I am still processing, questioning and learning.
e3/e4
No family history of AD, they drop dead of heart attacks in their early 40's!
Celiac and Hashimotos


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