I fear I have early dementia

Question

Can we talk about our brains? My memory and confusion is getting to the point that I fear I have early dementia. I’ve always had brain fog I assumed was from fibromyalgia but this past year it’s gotten so much worse. I can’t remember if the worsening came along with the stomach issues about a year ago, all I know is that it’s terrifying. Can’t find word, get lost in the middle of conversations, the phone is the worse. If I’m asked my address I go blank. I’m constantly forgetting what I’m doing in the middle of doing it. I have a hard time talking about things with doctors because I forget symptoms. I think it’s gotten worse during this gluten challenge. I’m hoping when I’m able to go gluten free I get better if not It’s time to be tested for dementia. I’m just wondering if anyone else has has severe memory and cognition issues that improved going gluten free.

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Kim 3 years 30 Answers 609 views 0

Answers ( 30 )

  1. I believe my memory has improved after going gluten free. My father had Alzheimer’s and my family would tease that I had ALL-timers (all the time I couldn’t remember) I have also cut back on sugar since some believe there is a link. I would keep notes so when you go to your doctor you can reference them. Good luck!

  2. Mine got better, too. But if you don’t stop the progress now it can become dementia.

  3. I’ve been GF for a long time, this is my only symptom when I get glutened. Not only do I notice but my BFF notices and she’ll say ask if I got glutened?
    It’s the same as you, seems exactly what I go through.

  4. I also have this issue. They tested me neurologically.

  5. Yes I have these issues as well. I try to remember not to go in to long stories because I will forget what my point is or why I was talking about it in the first place. I draw blanks and can’t think of words. The brain fog is terrible. I’m GF and it has gotten better but it comes and goes.
    I also can’t remember things in the past. My husband will say “remember that one time” and I will say “what, no, that never happened” I hate that the most and that I have somehow lost these memories I made

  6. My brain fog went away nd concentration improved after going gluten free… I think u have to wait till u go gluten free

  7. Get your vitamin levels checked? Due to lack of absorption some Celiacs are deficient in B12, D, etc. B12 deficiency can cause brain fog.

  8. I have not been diagnosed. I had a rash and was tested for lupus. Did not have lupus but could not convince rheumatologist to check for celiac disease. Dermatologist would not check either, saying my rash was not in right place to have DH. My biggest concern was I was fearful I was getting Alzheimer’s. And I was becoming anxious about driving, feeling I was not as alert as I should be. My dad had Alzheimer’s. I went to a holistic doctor who said I had a digestive issue and the diet he gave me was probably for leaky gut. Later I thought it might be celiac disease since my sister had it. I gave up gluten about 9 months ago. My memory is better and anxiety also. But still not optimal. Just before this rash started, I had started allergy shots for inhalants . I quit those so my body wasn’t bombarded with chemicals. I asked allergist to be tested for food allergies, but nurse practitioner was there that day and refused to do them saying there was no indication I needed even though years ago I had been diagnosed with many food allergies, including wheat. I have been gluten-free about 9 months. My Eczema as they call it, is better. But I still have itchiness frequently. I have determined I need to eat plenty of fruits and vegetables plus juice a lot of the same. I am trying to eat minimal sugar since I am not sure but what yeast might also be a problem. I recently bought a few books trying to learn bow to take care of myself and also do breathing exercises to get oxygen to organs, etc.

  9. Yes, it can and does get better when you get off gluten. I noticed improvements within a week, but it’s a long process. I’ve read that neurological symptoms can continue to improve for at least 5 years, depending on the amount of damage and how well you heal. I’m working at healing, it’s my new career.

  10. It happens to me too. I am hoping it’s just because I’m still healing. I’m only on month 1. Studies show cutting out gluten actually help with lowering chances of dementia!

  11. Yes definitely. I also started taking some\nMemory helping supplements and I think they have helped also my thinking seems to be clearer and the dog has lifted most days and my response time answering questions has improved I don’t seem to Wonder around not knowing what I was doing as much.

  12. My son’s blood work came back and was slightly elevated. He was tested because his brother was just diagnosed with celiacs. The GI told me if he had any symptoms he should get scoped immediately. I told her he didn’t so she suggested waiting 6 months and having the blood work repeated. After speaking with her and learning more about celiac I realized that I think he does have the symptom you are all talking about. Even in preschool they called him the nutty professor because he can be so intelligent sometimes and then do and say really dumb things. His test scores are also all over the place. He tests above average on some tests and below on others. We always kind of wondered if he had ADD. Do you guys think it is a symptom?

  13. Mine improved after removing gluten, soy & dairy. I sounded like you, I’d forget where my phone was and mention it to the person I was on the phone to, lol. I’d stop talking in the middle of a sentence, with no idea what I was talking about. But after about 6 months I don’t have any more brain fog!

  14. Just before I got diagnosed I had no clue what was wrong with me- but one day I couldn’t remember how to write my name ! I was terrified. Going gf cleared that up thank goodness!

  15. I have the same issues. Currently being tested for lyme, lupus, b12 deficiency, mono and they are debating redoing celiac tests as mine was negative 5 yrs ago.

  16. Try Paleo diet. Get food sensitive testing done by functional medicine Dr. I did and I’m so glad I did it.

  17. Do you have any liver issues?

  18. I have this issue but I’ve been gluten free since 2013 and it’s just started within the last year or so. I have a horrible time forgetting everyday words and my brain will just go blank at random times. I sell auto parts so I’m always writing what people on the phone are telling me. I’ve noticed someone will be telling me something and I’ll start writing something totally different and have no idea why I’m doing that.

  19. If your B12 is deficient for too long, the cognitive issues can be permanent. That is what happened with me.

  20. My forgetfulness continues to clear up – with better sleep (finally) and supplements and adding more protein to my diet – adjusted thyroid med (actually lowered the dose) and started some hormone supplements (I am 56). It’s amazing what hormones can do…I did have a neuro-psych evaluation in 2015 that indicated I was fine and that my symptoms were probably stemming from anxiety and depression (those are 2 of the side effects for me when “glutened”).

  21. After reading all the other comments, I decided to share my experiences in hopes that it will help someone. At 63 years of age, my neurological issues started a very long time ago. While in my 40’s, I had symptoms of seizures, where I would go unconscious. They never recorded as seizures on the tests. However, every MRI of my brain was positive! My hippocampus (the signal center of the brain), is smaller on one side than the other & deteriorating. My current neurologist said that usually only happens with an AUTOIMMUNE disease. He said: “You don’t have one.” I said: “Um, doctor, I have celiac disease.” “That’s right! You did tell me that! That is an AUTOIMMUNE didease!” He said. That was two years ago. I’m going to be scheduled for a new MRI soon as I have pain in my head above my left ear, sometimes a little, sometimes almost unbearable. So, in conclusion, all the symptoms everyone mentioned are not necessarily dementia or Alzheimer’s disease. Yes, the brain Is involved somehow…it’s difficult to figure it all out. Like so many other celiacs, I forget names, can’t always think straight, have difficulty concentrating, can’t remember many things, and I have a 4 year college degree! I’m glad I’m a musician, because that part of my brain still works! I hope you can all find a silver lining!

  22. I think it’s something to do with having an autoimmune disease

  23. Me Too actually

  24. It will be worse when you are eating gluten. Sounds like you have some nutrition deficiencies. Get you vitamin Bloodwork done.

  25. Between having sleep apnea and celiac disease I can totally empathize with you. I’ve been having some of the same problems from both diagnosis… All I can really say is they told me that over time there was a chance that it could repair itself

  26. I have this issue. Mine was caused by low vitamin B12. I take a daily supplement of liquid vitamin B12 and it helps. It took awhile to see a difference. My levels were on the low side of normal when tested. Now, they are on the high end and I am so much better.

  27. I lived in a nightmare haze before going gluten free, exacerbated by a whopper of a histamine intolerance.

  28. I am going through the same thing right now…waiting for my scope and the brain fog is getting worse. I am getting super forgetful – having to write down all my symptoms bc I cannot recall them and I also find I am struggling with basic math and finding words (SIMPLE words and SIMPLE math). It’s getting very scary and I really hope this goes away when I go gluten free!

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