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karonruiz

Please Help, I Am Trying To Keep My Elderly Mother Alive

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Long story short, my 78 year old mother has lost 50 lbs. since August 07', been hospitalized 8 times, almost died three times, change GI doctor twice, going on our third; has had celiac genetic test, blood test, two colonoscopy, and an EUD (not sure on that acronym, sorry...). This last week, doc finally came in her hospital room and told us to put her on gluten free/lactose free diet AGAIN, after telling us to take her off of it so she would regain some weight. (we had her on this before but she kept cheating, was in denial) He says tests show inconclusive signs of celiac but is not sure; blood test is negative, genetic test is inconclusive.

Okay, so now we moved her in with me (her daughter) so that she may be monitored because she is very mentally confused (seems to have dementia) and she is now on rigid gluten free diet, I even took her lipstick away from her. We've been honest-to-goodness gluten free for 7 days now. She still has diarreah, is on 4 anti-diarreah pills per day, 2 pretizone per day, one zoloft, and 4 potassium per day. Her stools are still like baby poop (maybe just a tad firmer), she is complaining of fatigue, but other than that, feels okay.

How long, with the strict adherence to this diet, will it take for her stools to normalize?

Will she regain any of her mental faculties - she seems to constantly forget things and repeats things over and over.

This, all from a woman who was very independent less than a year ago; still working part time, and daily swimming laps.

Please help.

Desperate daughter

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HI

I don't have alot of answers but lots of prayers and hugs for you both.

my mom passed 3 months after i was dx'd and I'm positive she had it.

the only thing that helped me get better control of the 'd' was imotil (?) a tiny white pill....and then after almost 3 years, gluten-free, sf, df, pf, cf, ..........I stumpled onto Habba Syndrome. If you google it you'll see this powder that he recomends. I forget the name but there is a thread on here for it.

took this powder a nite and it broke the cycle for me with the 'd'.

good luck

I'll see if i can find the thread.

Does your mom have her gallbladder?

Judy in Philly


Judy in Southern CA

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Long story short, my 78 year old mother has lost 50 lbs. since August 07', been hospitalized 8 times, almost died three times, change GI doctor twice, going on our third; has had celiac genetic test, blood test, two colonoscopy, and an EUD (not sure on that acronym, sorry...). This last week, doc finally came in her hospital room and told us to put her on gluten free/lactose free diet AGAIN, after telling us to take her off of it so she would regain some weight. (we had her on this before but she kept cheating, was in denial) He says tests show inconclusive signs of celiac but is not sure; blood test is negative, genetic test is inconclusive.

Okay, so now we moved her in with me (her daughter) so that she may be monitored because she is very mentally confused (seems to have dementia) and she is now on rigid gluten free diet, I even took her lipstick away from her. We've been honest-to-goodness gluten free for 7 days now. She still has diarreah, is on 4 anti-diarreah pills per day, 2 pretizone per day, one zoloft, and 4 potassium per day. Her stools are still like baby poop (maybe just a tad firmer), she is complaining of fatigue, but other than that, feels okay.

How long, with the strict adherence to this diet, will it take for her stools to normalize?

Will she regain any of her mental faculties - she seems to constantly forget things and repeats things over and over.

This, all from a woman who was very independent less than a year ago; still working part time, and daily swimming laps.

Please help.

Desperate daughter

Call the pharmacy and get a copy of the inserts that come in her meds. Then call the manufactures and see if there is gluten in her meds. Check things like soaps and shampoos, tooth paste, lotion, to see if it in there as well. I don't have the diarreah problem so don't know how long that part of it takes but I am sure someone else will let you know. Have they done tests for the dememtia?

Yellow Rose


27 years of misdiognoses

seziures summer of 1979 lasted 10 years had maybe a dozen in that time Dr.s never could find what was causing them blamed it on lack of sleep and maybe nutrasweet

rheumatoid arthritis May 1980

wrist joint replacement Jan 1984

fibromyalgia May 1980

insomnia since the 80's

diarrhea 1995-2000 blamed on arthritis meds

Crohn's 1998 after two operations to fix fissures caused by the diarrhea

Other symptons over the last 27 years that have been treated for symptoms not causes:

depression, anemia, constipation, tooth discoloration, tremors in hands, tingling and numbness in feet and hands, fatigue, high blood pressure due to arthritus meds, flushing in face, severe muscle pain and thinking I was going crazy thanks to Dr.'s attitudes.

After diognoses my mother tells me I have an aunt and a cousin with Celiac. Mother tested negative but thinks she is intolerant to wheat and is changing her diet.

Suspect all three of my children have it as well but still trying to convince them to go get tested.

In answer to my prayer, "Lord Please Heal My Broken Body". May 2007 Celiac antibody test positive

Matthew 7: 8 Ask and ye shall receive, Seek and ye shall find, Knock and it shall be opened unto you.

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She may not be absorbing nutrients from what she eats. Look either online or locally for a product called Benecalorie. It is gluten free and recommended for those who need to gain weight.


Sandi ~ learning to live in a world obsessed and infested with wheat.

"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .

"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)

The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

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I'm a person who arrived at the celiac realization through candidiasis. Both are characterized by small

membrane permeability. I think the connection is the spikes produced by the candida albicans fungus.

Candida thrives on gut sugar. That makes it grow the spikes.

Oxidants, dyes and chlorine kill gut microorganisms. However, candida has a dormant state which

resists these oxidants. So when susceptible people eat sugar and oxidants, that kills competing

microorganisms and "blooms" candida in the gut.

The zonulin flood which gluten causes in celiacs opens gut-wall "tight junction" channels. To me this is

an opportune situation for candida to build its classic spikes through the channels.

I think celiac and candidiasis go hand-in-hand, as can be seen in the association between celiac and

diabetes. Anyone who has celiac, while dropping wheat from the diet, should at least try dropping all

sugar, dyes and chlorinated water.

Once again, what's the cost? ......that you didn't get a doctor's permission?

..

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Antidepressants often cause the very problems they are supposed to treat. Her confusion could be caused by the medications. You might want to try slowly weaning her off those.

Also, it might be a good idea to give her probiotics to fix the bacteria in her gut. Plus, I second the opinion of stopping all sugars, as well as all processed foods (which also eliminates dyes, obviously).

When I first found out that my D was caused by celiac disease, ALL processed food as well as all raw food would cause D for about six months.

I had to cook to the point of almost mushy all vegetables and fruit, or it would give me D. No salads for six months, either. And even now, 2 1/2 years later I don't tolerate raw things well.

The only things I could tolerate was well cooked meat, cooked vegetables and cooked pears and apples. All replacement gluten-free foods would give me D as well.

So, here are my suggestions for how to feed your mother for now: Chicken soup (no noodles or rice). Stir fries with meat and vegetables (and as I said, well cooked).

NO dairy or soy products at all. They are hard to digest and hinder healing.

No grains at all for now. Once the D stops you can try some rice noodles to see what happens. You can try scrambled eggs or soft boiled ones, but she may not be able to tolerate them right now.

Buckwheat (not a grain) cereal (I like cream of buckwheat from Bob's Red Mill) with rice milk (not Rice Dream, it has gluten) and a little maple syrup.

VERY light fare.

Has your mother been tested for the common deficiencies of celiac disease? She should have been tested for levels of ferritin (iron), vitamins B12 and B6, vitamin D, calcium, magnesium, potassium.

Lack of omega 3 fatty acids can cause dementia like states, as well as schizophrenia. Have her take cod liver oil (the best brand, that also doesn't taste bad, is the Carlson's cod liver oil). That will supply her with omega 3 fatty acids, vitamin D and vitamin A and might make a big difference in her mental state.

I hope your mother improves soon!


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Hi. Well, your post really hits home for me, my mother was in a similar situation about 5 years ago when she had diarrhea for about 9 months, was down to 86 pounds. They never did figure out what was really wrong...finally they told her to take pepto bismol 5 times a day and this did make the symptoms go away and she gradually gained weight. However, a year later she was diagnosed with adenocarcinoma of unknown origin, given 6 months to live, and she lived 8 months.

I debated about whether to share my story with you, because the last thing you need is perhaps the fear of cancer on top of everything. However, part of my mission in life since my mom died has been to help prevent such suffering. Since then, I found out that i'm celiac, and i'm convinced that that was my mom's problem all along...and also the reason she got severe osteoporosis at 60 yrs. among many other issues she had over the years. I wish I had known then what I know now when my mom had the diarrhea problem, becasue perhaps the cancer could have been avoided. Now, my mom was also a heavy smoker which didn't help her body fight cancer either.

In any case, now is the time for you to really help her heal. And you can. Everything Ursa Major suggested I think is great advice. I"m not sure you can't have white rice...but you can see how it goes. I have heard stories of people having mental confusion as a result of gluten problems too, and those clearing up after a month or so...so there's hope for that as well. The main thing is to be really strict with no gluten, and i'd definitely cut out dairy and soy as well. Those 3 are vital to do...the rest is recommended that Ursa major said, but at the minimum to that. Also vital is to make sure she is not getting any excitotoxins like MSG, aspartame (in diet sodas/gum/ etc) or food dyes or colorings/artificial flavors as these have major effects on the brain.

I would hire a dietitian knowledgable about food sensitivities/celiac to work with you if you can becasue you really want to make sure your mom gets adequate nutrients. You could try juicing vegetables to get high nutrient dense foods that are easily absorbed into her system. Is she being compliant with your restrictions?

There's a book called "Digestive WEllness" by Liz Lipski that is really good for all the info about how to heal digestive problems, includes alot of info on probiotics etc. Knowledge is power. You need to somehow do the research to help your mom because the doctors just don't know and don't have the time or care enough to REALLY help her. Try to find a good holistic MD in your town as well. Some of them do vitamin C intravenous infusions and that might be really good to boost her immune system and fight against any cancer cells that might try to grow in her weakened condition.

The body has an amazing ability to heal itself once the toxic stuff (ie. gluten) is taken away...so there is loads of hope that now that you have caught this thing and are addressing it, that your mom can get better. I will be praying for her and for you, don't give up, and keep fighting.

Liz


Liz

Positive enterolab results 11/07:

-antigliadin IgA: 56 (normal <10)

-antitissue tTG IgA: 39 (normal <10)

-anti-casein IgA: 34 (normal <10)

-HLA-DQ: 2,1 (2,6)

Positive blood test IgA and IgG 12/07

Gluten-free Casein-free since 12/07

mostly soy free since 12/07

Diagnosed with adrenal fatigue 08/07

Diagnosed hypothyroid 01/08

Still have mercury fillings, high mercury and lead

Multiple chemical sensitivities

9 year old daughter positive enterolab test for gluten, casein, soy and egg with HLA-DQ 3,1 (7,6)--mostly exhibits behavioral reactions to foods including food dyes, MSG, aspartame

Mother passed away 3 years ago of adenocarcinoma of unknown primary. Two years prior had diarrhea causing her to weigh 86 pounds...Mayo clinic told her to take pepto bismol. NO test for celiac, lifelong hx of ulcers, osteoporosis. I now know she had the celiac gene (my dad has DQ1) and was probably undiagnosed her whole life.

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I just lost my mom, she was 87. COPD not celiacs. Anyway, I know emotionally what you must be going through.

Ursa has some great points. The medication can be causing her confusion. Any chance you can take her to a geriatric specialist? They know which meds do this. I've read that anti-cholergenics are the worst.

Also, a very simple, unprocessed diet without grains or dairy might really help her heal. If you can try to make her some fruit smoothies with MCT oil. MCT stands for Medium-chain trigylcerides and they're absorbed into the blood, not through the digestive system (I think), so you get the energy from them even if you're not digesting food well. I'd toss several Tbl spoons of those into a smoothie for her. This is what they're supposed to give people that aren't absorbing nutrition well, but I don't think it gets done all that often.

If she tolerates coconut milk, you can make the smoothies with that. Otherwise I'd use water, fruit, a bit of sweetener if necessary, lemon juice for nice tartness. No dairy. Maybe some rice protein powder, don't use whey or casein (dairy). MCT oil.

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