When Is It Too Late?

[woofer]

Hi, I'm new here, so please be patient.

My mom is in the hospital, I'm looking for last chance info.

She has been diagnosed with Celiac for about 12 years. Does stay on her diet, occassionaly slips, she's human.

She is 73, pretty active, no other medical issues.

Had an intestinal blockage in NOvember, surgery removed twisted intestine. Didn't bounce back too quick, lost a lot of weight. Stuck to her diet and had another "blockage" about 1 month ago. Doctors can NOT find a blockage. Had several scans, does have bowel movements but once she starts to eat again, she keeps it down for about 72 hours and then gets sick. Bowel movements are watery, keep in mind she has no solid foods in this case. I can not get a doctor to explain why she keeps getting sick. We have been very careful about what she eats, gluten free, cottage cheese, mashed potatoes, apple juice, ect.

I am trying to understand what is going on here as the doctors have no info. Is it possible to have damaged the villi so much that they are gone? No way to rejuvinate them? Am I close?

Any info would be appreciated.

Many thanks.

[Jo.R]

I have no help, just wanted to say how sorry I am for what you, your mom, and family are going through. You're in my prayers.

[Nantzie]

I'm sorry you're all going through this too.

Your mom's complications may not be celiac related, but they also could be due to "refractory celiac" which basically means celiac that's not healing.

I hate to ask the hard questions with your mom being in the hospital so sick and all, but I think it's the only way to be helpful.

I'm not sure what you mean by occasional slips. How often is occasional, and is she actually eating gluten, or are you talking about hidden gluten getting in despite her best efforts to be completely gluten-free.

It used to be that doctors would tell people with celiac that they could have a little and to eat based on their symptoms. It's been found that that's the farthest thing from the truth. If someone isn't 100% complient with the diet, they are reinjuring and reinjuring and reinjuring themselves.

It's common for people who were diagnosed more than a few years ago to not realize how vital it is to avoid second-hand gluten (cross contamination). For example, a toaster used for gluteny bread can't be used for gluten-free bread. You can't share containers of things that get knives stuck in them; butter, peanut butter, jelly, mayo, etc. Some types of cookware can also hold gluten. Wooden spoons and cutting boards also need to be replaced.

Things like soaps, shampoos, lotions, cosmetics and other personal care items need to be verified as well. Medications definitely need to be verified because binders for tablets and such can have gluten in them. There are also over-the-counter medications for stomach issues that have gluten in them; Tums, Gas-X, and a few others.

If she's in a shared household (gluten-eaters and gluten-free-ers living in the same house), she needs to be especially careful. There are quite a few people here who have a shared household that can give tips if that's her living situation.

The father of a friend of mine was diagnosed with celiac as a toddler 50 years ago. It was only when I found out I had gluten issues that he ever heard anything about most of this. He has always avoided major sources gluten, but wasn't aware that second-hand gluten, small and trace amounts, and other sources like shampoo had anything to do with anything. My friend is now thinking that maybe that's why his stomach has never quite been right and was having increasing problems.

This whole thing has ended up backwards. It's usually the people who have been diagnosed less than 5 years or so who have the most information, and the people who have been diagnosed the longest who have the least info.

You've come to the right place to learn about all you need to know about the details of the gluten-free diet.

I hope this was helpful and your mom feels better soon.

Nancy

[woofer]

I have no help, just wanted to say how sorry I am for what you, your mom, and family are going through. You're in my prayers.

Thank you

[woofer]

I'm sorry you're all going through this too.

Your mom's complications may not be celiac related, but they also could be due to "refractory celiac" which basically means celiac that's not healing.

I hate to ask the hard questions with your mom being in the hospital so sick and all, but I think it's the only way to be helpful.

I'm not sure what you mean by occasional slips. How often is occasional, and is she actually eating gluten, or are you talking about hidden gluten getting in despite her best efforts to be completely gluten-free.

It used to be that doctors would tell people with celiac that they could have a little and to eat based on their symptoms. It's been found that that's the farthest thing from the truth. If someone isn't 100% complient with the diet, they are reinjuring and reinjuring and reinjuring themselves.

It's common for people who were diagnosed more than a few years ago to not realize how vital it is to avoid second-hand gluten (cross contamination). For example, a toaster used for gluteny bread can't be used for gluten-free bread. You can't share containers of things that get knives stuck in them; butter, peanut butter, jelly, mayo, etc. Some types of cookware can also hold gluten. Wooden spoons and cutting boards also need to be replaced.

Things like soaps, shampoos, lotions, cosmetics and other personal care items need to be verified as well. Medications definitely need to be verified because binders for tablets and such can have gluten in them. There are also over-the-counter medications for stomach issues that have gluten in them; Tums, Gas-X, and a few others.

If she's in a shared household (gluten-eaters and gluten-free-ers living in the same house), she needs to be especially careful. There are quite a few people here who have a shared household that can give tips if that's her living situation.

The father of a friend of mine was diagnosed with celiac as a toddler 50 years ago. It was only when I found out I had gluten issues that he ever heard anything about most of this. He has always avoided major sources gluten, but wasn't aware that second-hand gluten, small and trace amounts, and other sources like shampoo had anything to do with anything. My friend is now thinking that maybe that's why his stomach has never quite been right and was having increasing problems.

This whole thing has ended up backwards. It's usually the people who have been diagnosed less than 5 years or so who have the most information, and the people who have been diagnosed the longest who have the least info.

You've come to the right place to learn about all you need to know about the details of the gluten-free diet.

I hope this was helpful and your mom feels better soon.

Nancy

Thank you for all the info. She does stay on a gluten free diet exept for the hidden gluten unknown to her. Right now I feel like her stomach, small intestine is not absorbing or passing on the food she is eating. It sits until there is too much and she gets sick. Does celiac disease eventually kill your intestines over time? I know that is a blunt statement but given our doctor situation I can't get any answers.

tricia

[corinne]

It does sound like something else besides celiac (microscopic colitis often hits older women and can lead to water D even when not eating or possibly another type of colitis). Hopefully, you can get the doctors to listen that she has been active and has stuck to her diet and that they need to find the source of this problem.

[Nantzie]

I agree. It sounds like something else is going on. It sounds like it's time for second, third and fourth opinions until the doctors figure it out.

Doctors, and those of us with celiac, tend to blame everything on celiac. It's important for the doctors to put that to the side and rule everything else out before they point the finger at celiac at this point.

I would also just re-verify any food and products she's using, although it doesn't sound like she's eating much. Sometimes a re-formulation can sneak up on you and cause problems. It may not be the cause, but might be adding to the problem.

Other than that, insist on some second opinions.

Colitis sounds like a fit to me too.

I did a search online to see if I could find anything else for them to look into. I don't know if any of this has anything to do with what is going on, but it might help get some ideas flowing.

I found a description of pyloric stenosis, which is narrowing of the passage between the stomach and intestines, which blocks the passage of food into the intestines. It is usually a structural abnormality that a person is born with, found and corrected surgically in infants. But can also be caused by pyloric and peptic ulcers, or pressure from a tumor on the outside of this area. I'm guessing they've done scans and exploratory surgery to rule this out as a possibility, but wanted to bring it up just in case.

You might want to ask them if they've determined what is causing the food not to pass from the stomach to the intestines. Not the reason why it's happening, but the basic issue. Is the pyloric opening swollen or obstructed in some way? Or do they think that the problem is in the intestines themselves? Have they determined if the food is going into the intestines and then back to the stomach? I think the opening between the stomach and the intestines is one-way only, but just throwing ideas out.

Isn't there a scan they do to determine how fast food is passing through the system? Has she had something like that done?

Nancy

[Karen B.]

Hi, I'm new here, so please be patient.

My mom is in the hospital, I'm looking for last chance info.

She has been diagnosed with Celiac for about 12 years. Does stay on her diet, occassionaly slips, she's human.

She is 73, pretty active, no other medical issues.

Had an intestinal blockage in NOvember, surgery removed twisted intestine. Didn't bounce back too quick, lost a lot of weight. Stuck to her diet and had another "blockage" about 1 month ago. Doctors can NOT find a blockage. Had several scans, does have bowel movements but once she starts to eat again, she keeps it down for about 72 hours and then gets sick. Bowel movements are watery, keep in mind she has no solid foods in this case. I can not get a doctor to explain why she keeps getting sick. We have been very careful about what she eats, gluten free, cottage cheese, mashed potatoes, apple juice, ect.

I am trying to understand what is going on here as the doctors have no info. Is it possible to have damaged the villi so much that they are gone? No way to rejuvinate them? Am I close?

Any info would be appreciated.

Many thanks.

Sorry you and your Mom are having to go through this. I was scanning the responses thinking I wouldn't have anything to offer more than what has already been covered, but I remembered something from when I was first diagnosed. They told me the first damage to a Celiac tends to be to the tips of the villi that produce the enzyme that helps us digest dairy products. You may want to try cutting out the cottage cheese. Also, I've been told bananas are easily digestible and can be mildly constipating (in large amounts) which might help her absorb more nutrition. One other item is that apple juice can bother people's stomach where fresh apples do not. The juice is much more acidic with no fiber. Applesauce is a good compromise.

Have you thought about asking the doc for a dietician referral? Especially if she is eating hospital food. Not all dieticians are knowledgeable about Celiac but a good dietician might be able to assist in at least getting food to your Mom that she can absorb.

Have the doctors made certain that all of her meds are gluten-free? Some meds are held together with wheat starch which can be a real problem for a Celiac. It sounds like a small amount, but it can be important. As someone else mentioned, some docs think exposure is a matter of degree, but I speak from experience -- a little bit can create a major gluten reaction, especially if you are already down from something else.

You didn't note where you are located, but local Celiac groups usually know the doctors in the area that are knowledgeable about Celiac issues. I'd contact one of them for a second or third opinion. Here's links that can refer you to someone in your area...

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

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[terridavis11]

So sorry for what you are going through. I know what you are going through and recommend you find a specialist in celiac to come into the hospital or assist the drs. there. My father went through this last October. He cheated on his diet often thinking that he'd get sick for a few hours but no harm would be done. When my father went into the hospital no one really knew much about celiac and he continued getting sicker and sicker. They tried giving him potassium through IV treatment and he would get a little better than get sick again. At one point they did an emergency surgery thinking he had cancer or deteriation of his bowels and found no cancer but found that his celiac had damaged his villi beyond repair. We had a specialist come in and that was when we got this unfortunate diagnosis but I felt before that we were just having to explain the disease to everyone and sometimes they were looking at things that later we found were not important. My father also began displaying signs of dementia which made it impossible for him to make any rational desicions. Before we had a specialist come in I had to tell the dietician what my father could not eat. They gave him pancakes one morning, when no family was around. Unfortunately my father passed, my thoughts are with you and your loved one.

[crosstalk]

Though this thread is dated (and I just ran across it) I would look for anohter food inolerance. I suggest using the tests at enterolab.com. The problem is that if there is another food intolerance, it can cause the same problems as Celiac's, and it may not be readily apparent.

[grantschoep]

Back in 2005, I was diagnosed with Celiac. At the same time I was told I needed open heart surgery to repair a very damaged heart(rare disease.. heck I was 29 years old...) I had a rough time at first(spent almost 70 days in the hospital). I had a rough time, but after they actually fixed my heart, I felt so much better. My body was just so weak and jacked that I couldn't recover. I was having reactions to meds and the like.

Note, I did get great gluten free food from the hospital. Two of the nurses had gluten free familys. They talked with all the nurses in the cardiac wing and made sure they were educated. I really was lucky.

[Granny Garbonzo]

This is July 19th in the evening, and I hope your mother can still benefit from another reply. I just got on here after a long time, and this is the first time I've seen this call for help.

I am 50 years old, my mother is 77. We have known for about 20 years that ourselves and most of our family, possibly even my late father, are Celiac The way we found out was by my mother nearly dying in the hospital, much like your mother.

Some things come to mind....first, my own gluten response is for a swelling to occur just after the place where the food leaves the stomach. When I eat at that point, I vomit, and I have watery movements....and much pain just below the rib cage. When I experienced this, I took very very small amounts of bland foods, gluten-free of course, and liquid vitamins and minerals, and anti-inflamitory drugs. The doctors tried to tell me it was my Gall Bladder and wanted to do immediate surgery to remove it. I went home in great pain and doctored myself back to health, and still have my fully operative gall bladder 18years later.

Steroids....if it is not too late, suggest that the doctor give her steroids to rebuild her intestinal lining. This will buy her a lot of time to figure out what is wrong. My mother took them, and they saved her life.

Also, I had a friend who had the dissorder spoken of in one response, about the opening between the stomach and intestine being blocked or too small. This woman was elderly and had not had this all her life. The doctor in this case did not know what was wrong and he finally had her swallow somthing attached to a string thing, and he watched it on a screen as it digested. This is how he learned that it could not pass through the opening into her intestine.

My mother is still alive and fairly strong, but she lives in denial and eats a little gluten foods here and there, blaming her swollen abdomen and gas and loose stools on other foods or circumstances. It is really hard to watch her kill herself slowly. Please, if your mother is reasonable about gluten-free foods, help her research and find all the many many foods that can injure her system. Don't trust the doctors or the dieticians....they will all give you different answers. Learn yourself, become your own expert. And take lots of food supplements and health food options to build your system.

The best of hopes for you and your family, remember that the example you show in caring for your own health and the health of your family will effect your children and grand children....don't underestimate the need to be completely gluten-free and to make gluten-free foods interesting and the experience an adventure into new varieties of foods.

gluten-free Grandma in Oregon