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Celiac Mom's Dementia Issues


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11 replies to this topic

#1 TombRaiderShan

 
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Posted 25 November 2010 - 09:51 AM

Hi! I haven't been around for a while but I have a very big problem with my Mom now. My Mom was diagnosed with celiac two years ago and has been on a gluten free diet all that time (with the very occasional accidental minute gluten ingestion). She is 65 years old. For the last year, she has been showing signs of Alzheimer's disease (I have checked the 10 signs, and she fits most of them), however, she keeps blaming her dementia issues on celiac disease. She keeps finding articles about people who had brain fog and memory problems before changing to gluten free and then they were more normal. She keeps telling me she is getting better, yet every time I talk to her, she has memory problems.

For example: She has been working on a very major legal issue for several weeks now, and every time I talk to her, she talks about it. Yesterday, however, she starts talking about it again, and she asks me, "Did I tell you about that?" I very gently said, "Mom, we have been talking about that for weeks now." She freaked out on me. She raised her voice and started accusing everyone of saying to her "how could you forget that!" and she told me "I have talked about this legal issue with so many people I just wasn't sure I talked about it with you!" Now, mind you, she has only talked about this with my Dad, sister, Aunt, lawyer and me, so I am NOT one of a multitude of people. Also, we have had very lengthy conversations about this issue.

In the same conversation, we were talking about Christmas, and I asked her if she could send "the budget amount" of money she would normally spend on my boys to me and I will shop for presents for her and Dad and put their names on them. I told her I could get better deals and also take the added stress of shopping off of her. You have to understand that my Mom in the past has been very strict about the "budget amount" she spends on each child and grandchild. In this conversation, she had no idea what I meant by that. I had to explain it to her over and over. THEN she said "Ok, well you just go out and shop for the boys, tell me what you spent, and I will send you the money." This was after explaining to her that it was not feasible for me to spend all that money first, then be reimbursed later. She just could not follow me AT ALL.

One last example: The day before my conversation, my Aunt (her sister) talked to my Mom. My mom asked her to give her a recipe for turkey breast over the phone. My aunt told me that this very simple, short recipe could not be comprehended by my Mom. She said she had to keep repeating it and explaining what to do. She said that a 5 year old could have made this recipe with ease. She has had many exasperating conversations and visits like this with my Mom.

My Mom has always been very organized and bright. She does my parents' bills and is good with numbers. Her personality is changing. She keeps blaming her condition on the effects of celiac disease AND she claims she is getting better. She refuses to believe what she is going through could be attributed to Alzheimer's. The sad thing is, if she didn't have celiac disease, she would have seen a neurologist by now about it. The really sad thing is my Dad refuses to believe the dementia is due to anything else but celiac. I have had a conversation with him about my concerns and flat out said "it could be Alzheimer's," but since one of the possible side effects of celiac is memory and brain issues, he refuses to believe it could be due to something more serious.

Everything I have read about brain issues and celiac disease is that once a patient switches to gluten free, they improve dramatically. She keeps saying she is much better, yet my Aunt, sister and I keep noticing that she "can't remember that." I feel so helpless. I think she has Alzheimer's, but since my Dad is not on board with my suspicions, he keeps enabling her insistence that it is due to celiac disease. The good thing is, she has an appointment at the Mayo Clinic for her terrible gastritis and other side effects of celiac in February. I am going to find a way to talk to her Mayo doctor so he is aware that she needs to also see a Mayo neurologist in order to rule out Alzheimer's. My Mom and Dad my never speak to me again for going above their heads, but if it means she will be diagnosed and properly treated, then I don't care. I just want her healthy. Also, she is still very thin. She went from 160lbs to 120lbs after diagnosis and she is 5'6". I think she forgets to eat!

Anyway, any advice for me? I truly believe that if I ignore this, then I am not being a good daughter and I won't have that, I love her way too much. Thanks to anyone able to give advice.
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#2 starrytrekchic

 
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Posted 25 November 2010 - 11:20 AM

It does sound like you're describing dementia, not celiac-related problems (note, I'm not a doctor.) In dementia, the person affected doesn't know that something's wrong. They're also more likely to lash out when someone brings up their problems.

When we celiacs have brain fog, we know something's wrong. We might not be able to think it through, but we know we're forgetting things and not functioning on all cylinders.

I'm not an expert, but memory-related problems due to celiac should only crop up after a glutening. If her bloodwork is normal (she's following the diet) then this shouldn't be a problem. You might have her vitamin and minerals levels checked just to be sure she's not lacking something important, but I think you should go ahead when some sort of dementia screening. The earlier the better.
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#3 Skylark

 
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Posted 25 November 2010 - 12:25 PM

Sadly, you are describing very classic dementia. I think getting her to a neurologist is a great idea.
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#4 TombRaiderShan

 
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Posted 25 November 2010 - 04:11 PM

Thank you for your responses. I appreciate your help, as you all have a lot of experience with celiac. Now to find a way to get her tested..
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#5 finally diagnosed

 
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Posted 25 November 2010 - 05:41 PM

Thank you for your responses. I appreciate your help, as you all have a lot of experience with celiac. Now to find a way to get her tested..


I know I am reaching here, but has anyone checked your mom for a UTI. Elderly people exhibit urinary tract symptoms different then what we do... they have memory loss, confusions, delerium... it's a reach but someone should get a urine culture and check to see if she is dehydrated... they don't get the usual such as burning w/urination, cramping etc....

my dad's sister was 68 when they diagnosed her with dementia... she also was a very bad asthmatic and used alot of inhalers and had many asthma attacks... it makes me wonder if this had anything to do with her memory issues..

good luck..
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#6 cassP

 
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Posted 25 November 2010 - 08:23 PM

i definitely agree you need to get her to a neurologist! its always good to get everything else checked- even tho gluten can greatly affect the brain and so many other organs besides the intestines- a lot of these symptoms overlap and you dont want to miss a serious diagnosis because you could explain the symptoms away...

hope she gets everything checked out- and will be ok :)
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#7 eatmeat4good

 
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Posted 26 November 2010 - 04:27 AM

It would be worth looking at whether she is taking vitamin supplements (or is she forgetting?) Vitamin B deficiency is known to cause dementia-type symptoms. If she was only diagnosed with Celiac 2 years ago there may have been long-term malabsorption of the B vitamins. I am reading about symptoms of vitamin deficiency causing memory and behavior problems. It happened to me. The B vitamins must be taken regularly as they only stay in your system for a day or two. With long-term undiagnosed Celiac, it becomes ever more important to take the B vitamins to avoid the negative effects of B deficiency on the brain. The 3 D's are indicative of B deficiency...diarrhea, dermatitis, dementia. This is just one thing to consider in your search and seeing a neurologist is a great idea. I wish you and your mom the best.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#8 ravenwoodglass

 
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Posted 26 November 2010 - 02:51 PM

I do agree that she should be seen by a doctor. You may want to contact her regular doctor and let them know of your concerns if you don't think she would bring them up at a visit. It would be a good idea for her to get her antibody levels run as well as vitamin and mineral panels and you might suggest that to her, and while the doctor is seeing her for that she can be evaluated for dementia at the same time.
The idea for supplementing with the B's is a good one, some sublingual B12 may help a great deal if she doesn't take it already. In addition some of us are very, very sensitive to CC issues so if she is having frequent glutenings that could slow the healing process if the brain problem is part of her celiac impact. Also when the brain gets severely impacted it can take a long time to heal, it does not happen quickly. I am about your Mom's age and it took me 2 years to be able to read and remember what I read well enough to enjoy reading short stories again but it took another 5 years before I had healed enough to be able to return to college and finish my degree.
I hope she will agree to a doctors check up soon.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#9 TombRaiderShan

 
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Posted 28 November 2010 - 02:56 PM

Thank you all for your concern! I told her to get checked for B12 deficiency. She has taken Lame Advertisement all of her adult life, so she always has vitamins on hand and she keeps them on the table so she doesn't forget.

@finally diagnosed: That is interesting you say UTI. She just told me that her GP told her she has pus in her urine. She told me she has no other symptoms of a UTI. I am so happy you mentioned this! I will tell her to speak again to her doc about antibiotics. Since she has always been a health nut, she detests taking medication, but she really needs to lighten up. She does have to take blood pressure pills (runs in the female side of the family), but she really doesn't like taking antibiotics. I will tell her she needs to.

Thanks again everyone!!
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#10 SGWhiskers

 
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Posted 01 December 2010 - 01:59 PM

I agree that she is very suspious for Dementia. There are other forms of dementia besides Alzheimer's that are less common, but treatable (I'm thinking normal pressure hydrocephalus). Talk to her doctor and let the doc know your concerns and let her know that your mother would be upset with you for talking to your doctor. The doc may have a way of approaching the need for a neurologic assessment without upsetting your mother. In regards to her weight loss, have your father in law help with making sure her food is really gluten free. Alzheimer's patients often do forget to eat or lose their appetite. Red plates have been shown to help increase caloric consumption due to their high contrast with the food.

At first, my mother in law needed reminders to eat. Then she needed someone to put the food in front of her. Now she needs someone to tell her to keep eating. If your mother does get a diagnosis, look at getting her into a clinical trial. Most want patients to be on the normally prescribed meds in addition to the therapy they are trying.

Best wishes for you and your family.
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#11 plumbago

 
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Posted 01 December 2010 - 07:36 PM

There could be more than one physiologically based cause of dementia. It may even be temporary. Others have mentioned the B12 problem. There's also pernicious anemia that you may want to get her checked out for. I'd just research it as much as possible. Blood tests! I was concerned about the drastic weight loss.
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#12 Skylark

 
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Posted 01 December 2010 - 08:51 PM

There could be more than one physiologically based cause of dementia. It may even be temporary. Others have mentioned the B12 problem. There's also pernicious anemia that you may want to get her checked out for. I'd just research it as much as possible. Blood tests! I was concerned about the drastic weight loss.

I missed the weight loss. That's 25%! She needs medical care and blood testing sooner rather than later. As far as I know, Alzheimer's doesn't cause that kind of weight loss until it's progressed really far.
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