Helping Someone Who Wants To Give Up

[SemaphoreSun]

Hi, my mom was just diagnosed with celiac last month and she is having a very hard time dealing with it. I see that anger and grief are a normal part of dealing with the disease and she cycles in and out of depression and other feelings but my concern is that she was feeling better after a few weeks of eating gluten free but now the symptoms seem to be coming back. This is causing her to see celiac as a choice and she is considering abandoning the gluten free life and just dealing with the crippling repercussions. She is also diabetic so the food restrictions are really making her bitter. Does anyone have any insight into how long until symptoms improve or how to be supportive when she is so very angry?

[Curtiss Ann Matlock]

I am so sorry for yours and your mom's experience. Dealing with celiac at the beginning sure is not a walk in the park. It is an entire attitude change about life. I was diagnosed at the age of 50, and my mother was 75. We were so sick that we were simply glad to find the cause and to get better, but I have to say that I went through a great deal of anger. At one point, after listening to me complain for a few minutes, my husband said gently: "Now, I don't want you to get mad, but don't you think you're feeling sorry for yourself." It was the right words at the right time.

I had to decide if I wanted to be healthy, and only I could decide that. No one could do it for me. It is very much like an addict, because in this society we are addicted to eating wheat and fitting in. Did I want to have a life? Being gluten free was the only way. I realized the same for my mother, and frankly, I was too sick to worry about her. I was tempted, when she kept thinking, "a little bit won't hurt me...I'll just take Imodium." She still thinks this way, but I do not. Each has a choice.

CurtissAnn

Hi, my mom was just diagnosed with celiac last month and she is having a very hard time dealing with it. I see that anger and grief are a normal part of dealing with the disease and she cycles in and out of depression and other feelings but my concern is that she was feeling better after a few weeks of eating gluten free but now the symptoms seem to be coming back. This is causing her to see celiac as a choice and she is considering abandoning the gluten free life and just dealing with the crippling repercussions. She is also diabetic so the food restrictions are really making her bitter. Does anyone have any insight into how long until symptoms improve or how to be supportive when she is so very angry?

[mushroom]

Hi, my mom was just diagnosed with celiac last month and she is having a very hard time dealing with it. I see that anger and grief are a normal part of dealing with the disease and she cycles in and out of depression and other feelings but my concern is that she was feeling better after a few weeks of eating gluten free but now the symptoms seem to be coming back. This is causing her to see celiac as a choice and she is considering abandoning the gluten free life and just dealing with the crippling repercussions. She is also diabetic so the food restrictions are really making her bitter. Does anyone have any insight into how long until symptoms improve or how to be supportive when she is so very angry?

We all grieve the loss of gluten from our diets, and anger is a normal part of the grieving process as you know. You must just encourage her and be supportive. It really does take a while for the gut to heal, and until such time she will continue to experience setbacks and recurrence of symptoms sometimes. Perhaps gluten is sneaking in somewhere, she may be experiencing cross-contamination from some other source. Is she living in a gluten free house? If not, everyone (gluten and non-gluten eaters) have to be scrupulous about cleaning up counters and avoiding cross-contamination in things like spreads, peanut butter, etc. No dipping of knives that have already spread gluten bread back into the jar. The non-gluten eater should really have their own jars of these products clearly labelled and stored separately in a cupboard and on a separate shelf of the refrigerator.

Has she made sure to not use old wooden and plastic spoons contaminated with gluten or scratched nonstick pans? She should have bought a new toaster and colander because these cannot be cleaned of gluten. She needs to eliminate gluten from her cosmetics and personal care products, especially things like toothpaste and lipstick/balm, but also hand lotion and hair care products. It can be really hard to track down all the gluten in our houses because it is everywhere, probably in pet food if she has a pet (she must wash her hands after feeding the pet, and some people even get glutened from petting their animal ) She should also use separate sponge/dish cloths because these can be a source of cross-contamination. You can help her read the labels on all these things and help her organize her kitchen.

You can also tell her that she is very early in the healing process and it does get better. She just has to wait for the healing. Allow her to vent her anger at what she has lost. Reinforce that eating gluten free is really not a choice for celiacs, that the damage from gluten is not just the obvious symptoms she is experiencing right now, but the potentially more serious other autoimmune diseases she risks acquiring if she continues to eat gluten. Some of these are not reversible, like my rheumatoid arthritis. She has already developed the diabetes and she may well notice an improvement in that with a gluten free diet--many do. At least with celiac disease, there are no medicines to take to cure it, it is just the avoidance of gluten.

She might try taking a gluten-free probiotic to promote healing in the gut, and if her digestion is still poor the addition of a digestive enzyme may help her. Has she been tested by her pcp for vitamin and mineral deficiencies which often occur in celiacs because of the inability of the gut to absorb them?

Well done for trying to help your mom. The more you can learn about the disease the more you can help her. This forum is a great place to start (for her too, if you can persuade her).

[missy'smom]

There have been times since my diabetes DX, crazy as it may seem that I thought that I would rather just have diabetes than be gluten-free because at least diabetics don't have to worry about cross-contamination and I have run across some diabetics who were subsequently DX with celiac disease who found that to be a big stumbling block to them accepting the Dx of celiac disease. In truth, and most of the time, I would rather just be gluten-free. I can relate to some of your mom's feelings though. I have both diabetes and celiac disease. Having both and managing both is a bit overwhelming at times. It can be very compatible but it takes alot of resolve. I found about about my problems with gluten first and my great sensitivity to gluten taught me good skills to manage a restrictive diet that helped me when I was Dx with diabetes 2 years later. I had already given up alot, what was a few more things?! I felt better immediately when I went gluten-free but it took me a good 2 years gluten-free to feel close to what I thought normal should feel like. Many things about diabetes can cause us to not feel that great. Gluten can cause us fatigue but with diabetes high blood sugar can cause us fatigue too so if you just replace gluten carbs with gluten-free ones you may not end up with a balance that will cause the energy level to shift enough to a better balance. I manage with a very low carbohydrate diet. It means more restrictions but I feel so much better than if I follow the ADA guidelines. Dr. Richard Bernstein had T1 diabetes himself since he was a teenager and has lived a long, healthy life and reversed some of his complications so I follow and recommend his methods. That's the best advice I can give. His methods are compatible with gluten-free and very effective. gluten-free made me feel much better but getting a diabetes DX and following Dr, Bernstein's methods to lower my BG has made a big difference. It's still alot of work and a big sacrifice. There is a forum for those who follow his methods to support each other and he holds monthly teleconferences where he generously spends a great deal of his time answering, even personal, questions from anyone. I'm still angry sometimes about the diabetes Dx-angry that the Docs ignored me so long and that I would have had much more freedom, fewer restrictions if it had been caught earlier. The kind of help I appreciate the most is practical help with kitchen work or other household chores so that I can free my time for other things or just relax. I have the skills to plan and prepare meals and the resolve to stick with a diet for the most part but it's ALOT of work as I eat 4 regimented meals a day. I never eat spontaneously, always measure portions, count carbs, weigh proteins etc. If someone washes the dishes , puts them away or preps meals or ingredients according to my needs or helps with other household chores so I can have time for other things it helps ALOT! I would LOVE someone to come in and help me once a week with a prep and freeze day. In the end, as others have said, we are all responsible for our own health.

Just FYI, celiac disease is an autoimmune disease and has been linked with T1 diabetes and an autoimmine attack on the pancreas, which means that even if someone is not T1 they could progress to that IF the immune attck with celiac disease causes an attack on the pancreas, destroying the insulin producing beta cells. Not a fun thing to think about but a possible reality check. Google T1 diabetes and celiac disease. Good motivation to eliminate gluten.

I hesitate to share that as it sounds so harsh perhaps.

[Juliebove]

It's possible she is still consuming gluten and not realizing it. For example... My mom has food allergies. She annoys me no end because she keeps eating that which she is allergic to then complaining when she is sick. The other day it was eggs. She made a big deal about how she wasn't going to eat eggs at dinner. Then ordered waffles. When I pointed out to her that waffles contained eggs, she got angry. In her case it is a combination of things. She never liked to cook so perhaps doesn't really know what all ingredients go into to things. And she is elderly so her memory is going.

I have diabetes and food allergies. The diagnosises didn't come at the same time. First was the diabetes. I was very bitter for a couple of years and refused to go to any food related activities. My mindset was... Why should I have to go and watch people eating all that food I can not?

After a while I got over it. I realized that everyone has their own problems. Some are obvious to others while others are not. So for me, one of the issues is food. I have to deal with it. If that means bringing my own food to a party, or eating something beforehand and not eating at the dinner or just having some green salad with no dressing, then that's what I'll do.

But when I was in my funk? I don't think there was a thing anyone could have done to help me out of it. It was just something I had to go through in my mind and deal with it.

When I was diagnosed with the food allergies, it was much easier for me. My mom and daughter had been diagnosed prior to me. By that point I was really good at reading labels and since we shared some of the same allergies, I knew what was and wasn't safe for me to eat. Could be your mom hasn't gotten to that point yet. I know there were a few times I glutened my daughter because I thought a food was safe.

[Lynayah]

I am so sorry for yours and your mom's experience. Dealing with celiac at the beginning sure is not a walk in the park. It is an entire attitude change about life. I was diagnosed at the age of 50, and my mother was 75. We were so sick that we were simply glad to find the cause and to get better, but I have to say that I went through a great deal of anger. At one point, after listening to me complain for a few minutes, my husband said gently: "Now, I don't want you to get mad, but don't you think you're feeling sorry for yourself." It was the right words at the right time.

I had to decide if I wanted to be healthy, and only I could decide that. No one could do it for me. It is very much like an addict, because in this society we are addicted to eating wheat and fitting in. Did I want to have a life? Being gluten free was the only way. I realized the same for my mother, and frankly, I was too sick to worry about her. I was tempted, when she kept thinking, "a little bit won't hurt me...I'll just take Imodium." She still thinks this way, but I do not. Each has a choice.

CurtissAnn

Bravo. Great post, as are all the posts here. This is a wonderful topic.

[Lynayah]

Hi, my mom was just diagnosed with celiac last month and she is having a very hard time dealing with it. I see that anger and grief are a normal part of dealing with the disease and she cycles in and out of depression and other feelings but my concern is that she was feeling better after a few weeks of eating gluten free but now the symptoms seem to be coming back. This is causing her to see celiac as a choice and she is considering abandoning the gluten free life and just dealing with the crippling repercussions. She is also diabetic so the food restrictions are really making her bitter. Does anyone have any insight into how long until symptoms improve or how to be supportive when she is so very angry?

Please forgive me if this has been posted earlier in this thread. I saw your post and my gut told me to jump right to my thoughts:

Where do you live?

Is there a GIG (Gluten Intolerance Group) support group in her area? Open Original Shared Link

I am a member, and the understanding and support I've been given has been a greater blessing than I can say.

It really helps to be with others who are going through the same thing.

[Lynayah]

We all grieve the loss of gluten from our diets, and anger is a normal part of the grieving process as you know. You must just encourage her and be supportive. It really does take a while for the gut to heal, and until such time she will continue to experience setbacks and recurrence of symptoms sometimes. Perhaps gluten is sneaking in somewhere, she may be experiencing cross-contamination from some other source. Is she living in a gluten free house? If not, everyone (gluten and non-gluten eaters) have to be scrupulous about cleaning up counters and avoiding cross-contamination in things like spreads, peanut butter, etc. No dipping of knives that have already spread gluten bread back into the jar. The non-gluten eater should really have their own jars of these products clearly labelled and stored separately in a cupboard and on a separate shelf of the refrigerator.

Has she made sure to not use old wooden and plastic spoons contaminated with gluten or scratched nonstick pans? She should have bought a new toaster and colander because these cannot be cleaned of gluten. She needs to eliminate gluten from her cosmetics and personal care products, especially things like toothpaste and lipstick/balm, but also hand lotion and hair care products. It can be really hard to track down all the gluten in our houses because it is everywhere, probably in pet food if she has a pet (she must wash her hands after feeding the pet, and some people even get glutened from petting their animal ) She should also use separate sponge/dish cloths because these can be a source of cross-contamination. You can help her read the labels on all these things and help her organize her kitchen.

You can also tell her that she is very early in the healing process and it does get better. She just has to wait for the healing. Allow her to vent her anger at what she has lost. Reinforce that eating gluten free is really not a choice for celiacs, that the damage from gluten is not just the obvious symptoms she is experiencing right now, but the potentially more serious other autoimmune diseases she risks acquiring if she continues to eat gluten. Some of these are not reversible, like my rheumatoid arthritis. She has already developed the diabetes and she may well notice an improvement in that with a gluten free diet--many do. At least with celiac disease, there are no medicines to take to cure it, it is just the avoidance of gluten.

She might try taking a gluten-free probiotic to promote healing in the gut, and if her digestion is still poor the addition of a digestive enzyme may help her. Has she been tested by her pcp for vitamin and mineral deficiencies which often occur in celiacs because of the inability of the gut to absorb them?

Well done for trying to help your mom. The more you can learn about the disease the more you can help her. This forum is a great place to start (for her too, if you can persuade her).

I enjoyed this post and was able to relate to it on many levels. Thank you.

[Takala]

Some things to think about:

This is called a "gluten meltdown" and is typically when a person is getting either cross contaminated intentionally or accidentally by consuming gluten, after being on a gluten free diet.

Accidental cross contamination can come from medications, over the counter or prescription, cosmetics such as lipstick or lip balm, hand lotion then eating with the fingers, pet foods and then the pet licks or drools on you, old cookware that can not be cleaned of old gluten residue, and some people are even sensitive to shampoos and hair conditioners. It can also sometimes rarely come from a product that is supposed to be gluten free but is not, or was gluten free and then the manufacturer changed the product but the consumer didn't read the label carefully. ( I also have at least 2 dogs with known wheat allergies, and accidentally fed them out of a batch a dog food manufacturer changed the contents of, but continued to label the front of the bag gluten free, which caused all 3 of us major problems until I thought to look at the bag my spouse had purchased. What a mess. )

Yes they DO make wheat free cat foods if your cat sleeps with you and visits your desk regularly, and I highly recommend that sensitive people switch the indoor pets to them.

Some over the counter meds such as ibuprofen in large daily quantities are notorious for causing irritability, as is the artificial progesterone in some hormone replacements.

Thyroid problems or thyroid auto immune disease can cause depression. Plus food cravings. If on thyroid meds, they must be the gluten free kind.

Lack of the B vitamins causes moodiness. Very likely the malnutrition from the celiac is causing mood problems and many people, myself included, get more cheerful on a B complex supplement. Also, magnesium and calcium and vitamin D are very important for not only health, but temperament. Plus, calcium levels being low can cause sugar and carbohydrate cravings which people will mis intrepret as gluten cravings. Once the gut lining is healed, the malnutrition goes away.

I think some high fat foods such as coconut milk, olive oil, and avocados and nuts are helpful for moods because they help a person feel full and content.

Relatives should try not to eat gluten in front of abstainers if it bothers them, especially if there is not a safe, yummy alternative. It doesn't bother me, but my spouse decided to eat gluten free at home and I think if more people had that sort of emotional support they wouldn't be having problems with it. When we eat treats they are gluten free ones, unfortunately I have the baking gene and can make gluten free baked things easily if I want bread and I don't do much junk food anyway because we both gain weight on it. But I am content with simple food and don't feel deprived if it's a rice cake or tortilla because that's what's in the pantry.

For traveling we just automatically pack a little cooler with lunches and treats, this has the side effect of saving lots of money and being healthier anyway.

Sometimes here I will read another person's sig line and think, gee whiz, what a nuisance to avoid all that, and then realize it is the same thing I am doing and it's really easy compared to being sick all the time.