My Mom Needs Help Fast!

[Guest sh3ila]

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

[aaascr]

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..

[KaitiUSA]

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.

[Guest sh3ila]

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.

[celiac3270]

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.

[Guest sh3ila]

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.

[judy05]

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.

[judy05]

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.

[Rikki Tikki]

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.

[Merika]

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

[mytummyhurts]

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.

[Rikki Tikki]

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.

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.