Need help with my sister's Celiac Disease

[my3labs]

Hi everyone,
My oldest sister has Celiac Disease and has been struggling with it for about a year. She's currently 98 pounds and is about 5.4" tall. I just saw some pictures of her taken on Saturday and I'm scared that she is literally starving herself to death. She's 47 years old but looks like she's around 60. Her eyes are sunken in and her BMI must be around 1%. She seriously looks like a concentration camp victim.
I know that CD is completely manageable with diet and I'm afraid that she's either not taking it seriously or that there's something else going on. My parents seem to have this "we'll see what the doctor's say" and "there's not much we can do" attitude which infuriates me.
I testified against her in her daughter's custody case a few years ago (drug related) so our relationship is basically non-existent. I don't even know if she'll talk to me or our other sister but we feel like we need to do something immediately before her organs start to fail.
I think the problem is that she just won't adhere to the diet for whatever reason or maybe she thinks she looks good this way. I don't really know but I'm scared and looking for advice.
:hug:

[Bowwowmeow]

I'm awfully sorry to read this, my3labs. It is crucial to refrain from eating any grains with gluten in them, as the gluten flattens the intestinal cilia and renders them unable to absorb any nutrients in the food people eat. If celiac patients do not adhere srtictly to the diet, they essentially die of malnutrition, even though they may be eating more than a healthy person. If no one can convince her to follow the diet, your sister is going to get very ill.

I've read a bit about it when I got curious about gluten-free baking. People who rely on rice, quinoa, amaranth, and corn for their grain intake, and eat a variety of all other foods, can be very healthy, and without the use of drugs. But they've got to give up the gluten containing grains, which include wheat, rye, oats, spelt, kamut, and possibly barley. I hope someone can get through to your sister soon. :hug:

[1vegan]

I know that CD is completely manageable with diet and I'm afraid that she's either not taking it seriously or that there's something else going on. My parents seem to have this "we'll see what the doctor's say" and "there's not much we can do" attitude which infuriates me.
I testified against her in her daughter's custody case a few years ago (drug related)

She's ignoring it, or something else is going on.

What's the (official) source that siad Celiac Disease?

It could be just a false reason for covering up drug use (meth?) or some kind of anorexia from the problems in her life?

For some reason, I don't believe it's really CD, and if it is, then something else is going on too, cause with CD you don't have to "starve" :(

:hug:

[Oracl]

Sorry to hear about your sister, my3labs. :sorry: A good friend of mine in Cairns had CD. He was quite sick and lost a lot of weight until it was diagnosed and he changed his diet. Then he was perfectly fine and regained all the weight. :) So it does look as though there is something else going on with your sister's health. I think she needs help quickly if her weight is so low. :(

[paul]

Sorry im no usei dont know anything about Celiac Disease. hope you sister gets the help, and the rest of your family My3labs.:hug:

[Gliondrach]

The only thing we can do is send good thoughts to your sister. What's her name?

She needs someone to convince her that she has to eat a good diet. Someone who can show her how much she has to live for and be healthy for. Is she still on drugs, do you know? Does she see her daughter? Do you see her daughter? Perhaps she can tell your sister how much she loves her and how important it is for her to have her mother living in a healthy way in this world.

But until the reasons are known it could be counterproductive to make plans about what to say or do.
:hug:

[my3labs]

I don't think she's on drugs, and yes, she sees her daughter (she's only 13). Her name is Cindy. She told my stepmom that I could shove my head up my ass and to butt out.
From what I understand it has taken her five months of badgering her doctor to get a diagnosis. Although I thought she was diagnosed with CD about a year ago. Apparently the doctor now thinks that she's lactose intolerant and that is what's causing the sudden weight loss?????? the 98 lbs that she weighs now is supposedly an improvement from a few weeks ago.
It's just so hard to know what to believe or what to think since she won't talk to me or my other sister.
The pictures I saw look like she's on her death bed. She looks around 20 years older than she actually is, her eyes are sunken in, and she looks pale.
I spoke to some people at an eating disorder hotline and they said that when a person gets below 15% of their normal or healthy body weight, the system will start to shut down pretty quickly.
I'm worried that she might die.

[thevegantwins]

I can't imagine that CD or lactose intolerance could cause such a drastic weight change. I would think that something else would have to be involved whether drugs or an ED. Or both. Sounds like she needs both the medical profession and the psychiatric profession as well. You can only try your best to help since she doesn't want anything to do with you. Good luck. :comfort:

[Bowwowmeow]

Oh yes, celiac disease is a killer. Before they understood what caused it, children afflicted with it used to die of malnutrition before reaching maturity. The gluten acts just like glue to people who cannot tolerate it, preventing the intestinal cilia (or villi, I can't remember which) from standing up and absorbing nutrients. Celiac disease is very serious, and is fatal if gluten containing foods are not absolutely avoided. It is much more serious than gluten intolerance, or any other sort of intolerance.

I don't want to scare you, my3labs, but your sister's got to realize that she's got to stick to the diet rules. Her life really does depend on it.

[my3labs]

That's basically what's happening...she's starving to death.

I emailed her a few days ago and again today and she replied. She's willing to open up the lines of communication with me!!! I'm so very happy.

I'm going to call her tomorrow so I'll keep you all posted. Of course, good thoughts and well wishes would be greatly appreciated. :agree:

[my3labs]

BowWow,
Do you know if someone with CD is following a strict gluten free diet, can the lactose intolerance continue to cause the same problems of not absorbing nutrients?
I'm not sure at this point if she's truly following a gluten free diet but she or her doctor seem to be pinpointing her severe weight loss to the fact that she's also lactose intolerant. I didn't think that being lactose intolerant could cause such dramatic problems but I don't know squat about CD and am trying to understand what's going on.
I've been reading up on CD for the past few days and it's pretty extensive. At least with veganism, if we make mistakes, it won't physically hurt us (well, you know what I mean) but CD seems to be very dangerous if there are slips or cross contamination. I've spent the last two years educating myself on animal products and ingredients and I feel like I'm starting over with a brand new issue.

[Bowwowmeow]

I've never heard of lactose intolerance doing anything more than causing indigestion to sufferers. Its hard to say whether a person with CD might be more susceptible to lactose difficulties too, but I've never read of lactose intolerance causing major malnutrition.
Sending good thoughts, by the way! :hug:

[Gliondrach]

It's good that you two are communicating. As you know, it's important to avoid saying or doing anything to cause a cut off again. I think the best bet is to get her daughter to gently cajole Cindy into following a strict diet and eating enough. A few tear-filled entreaties from her daughter could do it.

Many of us are sending good thoughts Cindy's way.

[Oracl]

Good thoughts on their way! :)

[Phoenix]

Good thoughts on their way! :)
Ditto. :agree:

[Charmagne]

Yes - we are sending good thoughts.:comfort: Hope you can help her in some way.

[Fauxmage]

Any updates on how your sister is doing, my3labs?

[my3labs]

Thanks for asking. I'm going with the strategy of reestablishing our relationship first and then tackling the CD. Things have been going surprisingly well in getting her to talk to me. We've been communicating via email for the last few weeks. As far as her CD is concerned, she seems to be struggling. She recently was out of work for 7 business days due to an ear and sinus infection. My guess is that her immune system is so weak that any infection is causing her harm.
I can't "fix" her...even though I wish I could. I can only be here for her in the event that she needs me or wants to talk. I'm going to propose a visit (she's about 7 hours away, by car) within the next few weeks. Her daughter is graduating from middle school tomorrow night and I had hoped that Cindy would be there but she can't take any more time off of work so that won't happen. I am however, really excited that we're talking again so I guess that's the first step.

[Bowwowmeow]

That's the most important thing. She may not be receptive to your ideas about her condition, but having a good relationship with her is vital for both of you.

[Gliondrach]

I saw this in the links in an article I quoted in the 'Natural Remedies: Share Your Favourite Here!' thread. There are some links in the below abstract - to the rigtht of the page - that might be useful.

Appl Environ Microbiol. 2007 May 18; [Epub ahead of print]

Highly efficient gluten degradation by lactobacilli and fungal proteases during food processing: new perspectives for celiac disease.

Currently, the only effective treatment for celiac disease is a life-long gluten-free diet. This work used a new mixture of selected sourdough lactobacilli and fungal proteases to eliminate the toxicity of wheat flour during long-time fermentation. Immunological (R5-sandwich and R5-competitive ELISA, and R5-Western blot), two-dimensional electrophoresis and mass-spectrometry (MALDI-ToF, SCX-LC/CapLC-ESI-q-ToF-MS and HPLC-ESI-IT-MS) analyses were used to determine the gluten concentration. Assays based on peripheral blood mononuclear cells (PBMCs) proliferation and interferon-gamma production by PBMCs and iTCLs from 12 celiac patients were used to determine the protein toxicity of the pepsin/trypsin-digests from fermented wheat dough (sourdough). As determined by R5-sandwich and R5-competitive ELISA, the residual concentration of gluten in sourdough was 12 ppm. Albumins/globulins and gliadins were completely hydrolyzed while ca. 20% of glutenins persisted. Low molecular weight epitopes were not detectable as determined by SCX-LC/CapLC-ESI-q-ToF-MS and R5-Western blot analyses. The kinetics of hydrolysis of the 33-mer by lactobacilli was highly efficient. All proteins extracted from sourdough gave an activation of PBMCs and induced interferon-gamma as the negative control. None of iTCLs demonstrated immunoreactivity towards pepsin/trypsin-digests. Bread making was standardized showing the suitability of the detoxified wheat flour. Food processing by selected sourdough lactobacilli and fungal proteases could be considered as an efficient perspective to eliminate gluten toxicity.