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My Mom Needs Help Fast!


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11 replies to this topic

#1 Guest_sh3ila_*

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Posted 15 April 2005 - 12:14 PM

Hello, I'm new here and hope I'm doing this right. I know this is a long story but I need help desperately.

My mother is 66 and suffering with Celiac Disease. She weighs 92 lbs (or so she claims) as is physically wasting away. I wish I could describe my mothers toughness, vitality and strength before this all began so that you could have a better understanding of how far she her health has deteriorated. I’m not sure how long my mother has had the disease but a doctor told her (not sure which doctor – GP perhaps?) she had a food allergy, mentioned the term gluten and then referred her to a GI around 4 years ago. Knowing my mother and how tough she was I’m sure that her symptoms started years before that but didn’t ring a bell that she needed help. Certain foods gave her reflux, I guess she just took antacids. Anyway, after the doctor told her she had a “food allergy” as my mom described it I started questioning her further and finally she mentioned gluten. My mom is a very smart lady but only has a 6th grade education. She probably didn’t understand anything the doctor told her. I looked up everything I could find on the internet and printed it out in a binder for my mom. I explained to her that she would have to eat the foods on the list and bought her gluten free foods to try. She by that time wasn’t eating much of anything but still in decent health. I guess the GI prescribed her something for the Reflux and she was given something for the extreme abdominal pains she would experience after eating foods that didn’t agree with her. She started eating just certain items that she could eat that didn’t cause her to be ill for days (I don’t know if these contained gluten or not, she’s a stubborn woman and I guess, new to this, I thought if it didn’t cause her pain at least she could eat something) So started her diet of plain white potato, maybe a scrambled egg cooked without butter, junior baby food vegetables (green beans, carrots) and the little baby food Vienna sausage looking meats. She found she could eat Land o Lakes white cheese, with a salted rice cake and would have 1 or 2 of the candy BB’s for a desert. (I can’t remember which ones but I know they are on the gluten approved list). She is now down to only 1 rice cake (she’s proud that she has gotten it up to 2 for breakfast) with her white cheese on it. She drinks sprite and continues to have her coffee. I think there is some form of tapioca that she can tolerate and is trying to eat grits. She continues to have hunger pains and eats several little mini meals throughout the day. The GI had her in the hospital for around 2 weeks running tests on her. They were never able to run a colonoscopy on her because after a major amount of enemas and her trying to drink the stuff to clear her out she became extremely ill and threw it all up. She lived on popsicles for the 1st week then he brought in a dietician. He gave her an IV with some form of liquid nutrition in it that seemed to give her energy while she was on it. The diet they finally put her on (gluten free?) would be greasy baked or grilled? Chicken, jello, grits, greasy carrots, a plain baked potato didn’t work for her. She could only take a couple of bites and would throw most of it in the garbage or make my dad or older sister take it home so the nurse would think she ate more that she did. They thought that she was eating about 40% of her food when actually it was only maybe 10% and I’m being generous. When I was able to get to Baytown, Texas to see her in the hospital and found out from my sister about this, I promptly called the nurses station to let them know. When the doctor finally came in to see her while I was there, she tried to find out what was going on with her but he just “yes, yessed” her and patted her hand and played at placating her. I trapped him in the hallway and tried to find out facts of her treatment…he came out and told me it was Celiac Disease (Sherlock Holmes he isn’t) but laid out no treatment plan for her.



She is dying bit by bit! He released her and told her he was re-referring her to Dr. Dobbs (a GI) at the Methodist Hospital in Houston. My mom went to see this guy before (I went with her and dad). He apparently passed he chart to a doctor under him and they (admittedly) lost her chart. She waited to hear from them for 6 months. After that she gave up and just ate what she could until she finally (as noted above) went back to see Dr. Riscallah the GI in Baytown. But he removed the port and weaned her off of the IV then discharged her from the hospital telling her to see Dr. Dobbs for further testing. Dr. Dobbs’ office never called her so she called them and told the nurse (or receptionist or someone on the phone) what she thought that Dr. R was sending her back for. An upper endoscopy? Is that what they use to detect celiac? Anyway, the nurse told her that she was not a candidate.



My mother is ready to give up. I cannot and will not sit by and allow these doctors to do nothing while my mother dies from malnourishment. I have never found a case that sounds as hopeless as what my mom is going through and the doctors just don’t care. Do you know of any way my mom could receive the IV nourishment from a home care channel and as she regains the strength a dietician can teach her to cook meals that strictly adhere to a gluten free diet? Do you know of doctors who could help her or studies that are being conducted where she would qualify? Anything other than watching this once strong vibrant headstrong woman die inch by inch…



Any help you could provide, I would be eternally grateful.



Thank you,
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#2 aaascr

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Posted 15 April 2005 - 12:59 PM

Oh my..
Thankfully, your mom has a daughter as tenacious as her mom.
I don't know about home health care and iv's - but don't give up
until you get your mom situated. Maybe there's someone on this
board from her area that can recommend a better doctor.

As far as what your mom is ingesting, it is critical at this point
that she gets no gluten in her. I personally ate (and still do) lots of
small meals~ simple plain foods~ when I first became sick. I email or call the manufacturer of foods (packaged) that I buy to make sure it's gluten free
before I purchase it.
Reading ingredients for your mom will be most helpful.

You'll find tons of info on this site regarding ingredient terminology
cooking, cookware, recipes etc.
It helped me more than any of my doctors, dietitians etc.

Some of the things I take to help healing:

Distilled Aloe Vera Juice - start off w/1tsp and
work up to 1 tbsp - too much can act like laxative.

Enzymes to help digest foods (I use Whole Foods Wholezyme)

My doc also had me take MSM and DGL, they can be found in
health food or vitamin stores - just make sure they are gluten free.

These are merely suggestions, things that help me start to heal. Question though,
have you been tested for it?
Good Luck - let us know how things are going..
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alicia
been gluten-free 4 yrs.
too many food allergies to list!

#3 KaitiUSA

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Posted 15 April 2005 - 02:01 PM

What your mom needs is to be strictly gluten free. This will take away alot of her problems, help her gain weight, etc. She needs to be dedicated to it. There are lists on here of safe and forbidden foods. Has she attempted to be gluten free? It does not matter how much food she eats she will not get better if she is not gluten free. I understand about not being hungry because of not feeling good and feeling malnourished...I went through that but the gluten free diet fixed that.

I recommend she get on a good LIQUID vitamin(people who are malnourished will benefit more from this because of the way it is absorbed). Also I think that Enzymes and Probiotics are very essential as well.

She may want to consider getting on Ensure Plus because they have 350 calories for a little bottle(1 cup) It will give nutrients as well and it is gluten free(make sure it is chilled it tastes so much better chilled)

Just about everything can contain gluten. Below are brands that will label wheat,rye,barley, oats right on their label...if you do not see those ingredients on these labels then they are safe:
Aunt Nelly's
Balance
Baskin Robbins
Ben & Jerry
Betty Crocker
Blue Bunny
Breyers
Campbells
Cascadian Farms
Celestial Seasonings
Country Crock
Edy's
General Mills
Good Humor
Green Giant
Haagen Daz
Hellman's
Hershey
Hormel
Hungry Jack
Jiffy
Knorr
Kozy Shack
Kraft
Libby's
Lipton
Martha White
McCormick
Nabisco
Nestle
Old El Paso
Ortega
Pillsbury
Popsicle
Post
Progresso
Russell Stover
Seneca Foods
Smucker
Stokely's
Sunny Delight
T Marzetti
Tyson
Unilever
Wishbone
Yoplait
Zatarain's

Hope this helps and let me know if I can help you....this is definitely a good place for support and info. :D
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Kaiti
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Gluten-free since January 2004
Arkansas

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#4 Guest_sh3ila_*

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Posted 15 April 2005 - 02:22 PM

Thank you so very much for your reply. For a while there I was despondent thinking no one here cared either. Thanks for suggesting I be tested. I am adopted but my sister is already consulting with her doctor about being tested. She just turned 50 and is starting to experience symptoms. Her oldest son has always had food allergies but I just recently resumed my research into celiac disease (my last research was 3 - 4 years ago) and remembered the hereditary factor.

Thank you for your suggestions. I will get those items for mom. I have had friends suggest the Aloe Vera for general health purposes. What are the DGL and MSM? Also the enzymes....will they affect her liver? When she was in the hospital and on the IV nutrition (although I don't know exactly what he was giving her in the mix) after they removed her from it they insinuated that her liver enzymes were elevated due to the mixture.

Unfortunately or fortunately for me I've never experienced her symptoms so I don't know if the setback and excruciating paid she feels after eating something on the gluten free listing is because of the celiac or because her stomach is so small it can't handle the food.

She's only eating according to the doctor 400 calories daily. I have tried to tell her that she should try say adding a green bean (just pulled that as an example) to her rice cake and cheese for one week. Then adding 2 beans until she can get her stomach stretched back out. Does that make sense?

Thanks again for your reply...I really, really appreciate your help.
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#5 celiac3270

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Posted 15 April 2005 - 02:56 PM

We care...it's just that the time it takes for us to get back to you depends on how many people are on the board...and the traffic tends to come later in the day.

You said that her oldest son always experienced food allergies. Was he tested for them and if so, was he also tested for celiac? Many celiacs have some intolerance or allergy in addition to celiac disease: problems with lactose, casein, corn, rice, etc. And if you're mother has celiac, all relatives (symptomatic or not) should be tested since, as you already seem to know, celiac disease is genetic.

Your idea of slowly increasing meals makes sense. She can't just try to start packing it in or she'll feel very sick, but it's a good idea to add a little bit at a time. Also, if she eats very little, she should try to find the foods that have more nutrients.

I agree that it would be good to try Ensure. It's gluten-free and packed with vitamins and nutrients.
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#6 Guest_sh3ila_*

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Posted 15 April 2005 - 03:16 PM

Thanks celiac3270...

I can't remember if my nephew was ever tested or no...I have fibromyalgia so I have alot of brain fog these days. I do remember it was allergies and ADHD - you know controlling his attention and hyperactivity through diet. Never tested for celiac. I know once my sister is tested she will have him get tested also. After seeing my mom go downhill so fast...wow never knew eating the wrong foods would do this!

I think my mom tried ensure before but again with the brain fog...I will check with her to find out what happened with her on that.
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#7 judy05

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Posted 15 April 2005 - 05:39 PM

Sheila,

The" brain fog "as you describe can actually come from dairy. If I were you I would advise her to eat very simply, boiled chicken, bland veggies and applesauce.
If she has intestinal damage to the "villi" then she can't digest dairy either. I was sick for a whole summer 2 years ago and this is what I ate with a little variation for 3 months. My brain fog did not go away until I completely gave up dairy. I hope your mother feels better, I will keep her in my prayers. What is her name?

PS I meant to say to try the rice cake with a little jam or PB instead of the cheese.
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The one resolution, which was in my mind long before it took the form of a resolution, is the key-note of my life. It is this,always to regard as mere impertinences of fate the handicaps which were placed on my life almost at the beginning. I resolved that they should not crush or dwarf my soul, but rather be made to blossom, like Aaron's rod, with flowers-Helen Keller



Judy- Gluten Intolerant

#8 judy05

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Posted 15 April 2005 - 06:01 PM

Sheila,

Another important thing to know is that she needs to see a good gastroenterologist
and to have a scope or endoscopy done. I don't know why a nurse would tell you that she was not a good candidate, that's only a decision that only a Dr. could make. I didn't want to have the endo done because I was so sick but my doc insisted and found that I had severe acid reflux, which is called Barrett's ring, and I have to be scoped every year because it can turn into cancer. I have been on Nexium or Prevacid for a year. My villi were not damaged, my Dr was so cute he called them "willi" because he has a very heavy accent and it took me awhile to figure out what he was talking about. ;) I will always be so grateful to him because he was able to help me after so many years of not knowing what was wrong with me. :rolleyes:
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The one resolution, which was in my mind long before it took the form of a resolution, is the key-note of my life. It is this,always to regard as mere impertinences of fate the handicaps which were placed on my life almost at the beginning. I resolved that they should not crush or dwarf my soul, but rather be made to blossom, like Aaron's rod, with flowers-Helen Keller



Judy- Gluten Intolerant

#9 Rikki Tikki

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Posted 15 April 2005 - 07:10 PM

Hi Sheila:

I can only tell you about my own experiences. I have a hard time gaining weight, my daughters have had the same worries about me. They also would say that I was strong and vibrant before all of this.
Part of the issue for me is that I really do miss the old food. I don't eat it or even cheat because I hate the symptoms so much. The new food does not taste the same to me regardless of what others say. I was always an old fashioned type of cook. I loved to cook from scratch and nothing pleased me more than sitting down with my family for a good old fashioned dinner topped off by a good old fashioned dessert.
My daughters worry that I am going to waste away to nothing, if I do that's my choice not their burden to carry. I am 5'7" and weighed yesterday at the doctors 115 pounds. He doesn't seem to notice. Before this I weighed 135-140. I was sickened by what I weighed and vowed to do something about it. I think as with your mom a little of depression may be at play.
Everyone can tell me this gluten-free food is ok, but it's really not ok with me. I may say there are worse things I could have, that's true but to be honest I hate having this. To pay so much for food that I don't even like. The only things I have tasted that has been somewhat normal were items I ordered out of the gluten-free store, with shipping and the cost it's not something I can do much of.
I would be sure she has vitamins, maybe make her some ensure milkshakes. Start with things that are easy to swallow because it's almost a feeling like you just can't think of swallowing the food. Have her drink lot's of water. Rice cakes with peanut butter are good for me. Green beans, probably not. Now some of amy's frozen dinners gluten-free are ok, they have a good taste. It's like anything, we get tired of eating the same thing over and over. She does need a good doctor, someone to help her with her dietary needs. I wouldn't do the endscopy unless she get's worse or until she is stronger, but I am not a doctor or in the medical field. Maybe you need to advocate for her and then she will be strong enough to advocate for herself. Many of us spent years being told it was stress, all in our heads, depression etc.
To all my celiac buddies: I hope I didn't get too depressing on this e-mail. You guy's have been wonderful and very helpful. You have helped me
to get beyond my own feelings.
Maybe for the first time I saw myself through my children's eyes. Regardless, it's about my choices and not something I am doing because of them. On the other hand they do need me. I decided reading your post that I would eat more, even if I feel like I can't.
There are a lot of people that do indeed care here Sheila. Just that you have taken the time to do research, find this site probably means a lot to her, maybe she just can't say it.
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Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"
"blood work show's a disease called celiac,
but it can't be that because it's rare!"
Diagnosed via blood and biopsy 2003


Not a medical professional just a silly celiac
offering support, my
experience and advice

#10 Merika

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Posted 15 April 2005 - 07:26 PM

Hi Sheila,

Good for you for being strong for your mother while she cannot do so herself! I think what she is experiencing is common among celiacs, but as you say there's a point where losing weight can be dangerous. I have been gluten-free for one year and am 5'7" and 110 lbs. I am trying to gain weight.

Being gluten-free and celiac all of a sudden can be a shock - both physically and mentally. Physically, I continued to lose weight for about 12 months after going gluten-free. I think it just took my body that long to stop the downward spiral.

I also rejected food. It makes a certain amount of sense, psychologically - the food is making you sick so you stop eating it. Unfortunately, it seemed to me to apply to just about everything eventually and eating was just plain out depressing. It still is sometimes. I don't mind being gluten-free, but my tummy is just so screwed up that even gluten-free foods upset it. They're not "dangerous" foods in that they'll cause permanant damage, but they still can make me feel like cr&p for a while.

It is important that you hang in there and persist. I really needed my dh to encourage me to eat. He still does :)

Have you looked up any local celiac support groups? They may be helpful for local resources, docs, and assistance. I'd stay away from the aloe juice personally, as my experience was instant cramping and diahrea with just a 1/2 teaspoon of the stuff. Go with real foods, simple foods, WELL COOKED foods, and mix it up a bit.

Btw, dieticians can be useless, as many folks on this board will attest, so be careful about any advice gotten there.

hth,
Merika
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#11 mytummyhurts

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Posted 15 April 2005 - 08:44 PM

I don't claim to be an expert on this because I've only known I've had it for a few months. But one way to think about safe foods for celiacs is all natural. If man made it you don't want it. Which is basically true even for people who don't have the disease. So many things are added to basically everything to gain shelf life, stop caking, etc. So all natural foods, fruits, veggies, meats (with no additives, not the packaged stuff) are the best. And lactose intolerance can be a big problem with celiacs too because of the intestinal damage. So I'd stop the cheese until she is gluten free and stop any creamers in coffee, etc. Make sure any peanut butter is gluten free, maybe get the kind with only peanuts in it, nothing else added. And make sure nobody is sticking a knife in it with bread crumbs on it so she would then spread these onto her food. Cross contamination is something to remember too.

It sounds like the doctors aren't really that sure of what the problem is. Maybe it's not celiac disease. There's no way to know for sure without the endoscopy. :(

I'm sorry your mom and your family are having to go through this. I hope you are able to find out what is wrong and she gets better.
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#12 Rikki Tikki

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Posted 16 April 2005 - 05:03 PM

Hi Sheila:

I wanted to see how your mom was. Your post really made me think and today I am feeling a lot more perky and hopeful.
I just wanted to thank-you for making me think. :D
I would have your mom checked further, also your mom has to want to get through it. I really think our minds can make us sicker.
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Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"
"blood work show's a disease called celiac,
but it can't be that because it's rare!"
Diagnosed via blood and biopsy 2003


Not a medical professional just a silly celiac
offering support, my
experience and advice


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