An Open Letter To My Grandmother

[Strawberry-Jam]

Hello all! As you prolly know by now, I was diagnosed about a month ago with celiac disease--first person in my family to get the dx. I've had a lot of ups and downs recently, but have such hope because I've seen what a good day can be like.

Anyway, my father has already been tested (waiting for results) and my mother is going to get tested. But my grandmother needs it most of all. She's got it on her "to-do" list but I want to impress upon her the urgency of getting this DX, and also give her an idea of what to expect when going gluten-free.

She's suffered with fibromyalgia and crippling pain since I can remember. She also is hospitalized for intestinal blockages about once every two years. It's because she recently got out of the emergency room with one that I'm writing this now. She takes some kind of magnesium thing for constipation but that's her biggest and most worrying symptom, besides the fibro.

She tried the gluten-free diet per my aunt's encouragement a while back, but didn't stay on it very long, and I doubt she knew about hidden gluten or CC. Considering how long she's been sick, it'll prolly take a few years to set her right again.

I wanted those of you who have suffered with fibro and other chronic pain disorders to help me write a letter to her. I want her to hear your stories, your symptoms (especially if it involved constipation and bloating!), and how long it took them to resolve. I want her to have hope for recovery--for feeling GOOD for the first time in decades--but also realize that it will take time for this to happen, and there'll be ups and downs. I want her to know how important it is to be strictstrictstrictly gluten-free. I think the only thing she'll really miss is her crackers that she eats, but I'll help her find/make a good replacement. Having me gluten-free in the same town starting in May will help her I think.

Yeah! I need her to get up and go get tested. I had to have gotten celiac from SOMEWHERE. Can y'all help?

edit:

Her initials are V.W. if anyone wants to personalize it

[tictax707]

Although I can't really help with the letter writing (no fibro, & D is my prob), I wanted to let you know I thought your plan is amazing and thoughtful and loving. You, my dear, are a walking little gem, and your g-ma is so lucky to have you as a granddaughter.

I wish you well with your task at hand!!!

[Gemini]

Hello all! As you prolly know by now, I was diagnosed about a month ago with celiac disease--first person in my family to get the dx. I've had a lot of ups and downs recently, but have such hope because I've seen what a good day can be like.

Anyway, my father has already been tested (waiting for results) and my mother is going to get tested. But my grandmother needs it most of all. She's got it on her "to-do" list but I want to impress upon her the urgency of getting this DX, and also give her an idea of what to expect when going gluten-free.

She's suffered with fibromyalgia and crippling pain since I can remember. She also is hospitalized for intestinal blockages about once every two years. It's because she recently got out of the emergency room with one that I'm writing this now. She takes some kind of magnesium thing for constipation but that's her biggest and most worrying symptom, besides the fibro.

She tried the gluten-free diet per my aunt's encouragement a while back, but didn't stay on it very long, and I doubt she knew about hidden gluten or CC. Considering how long she's been sick, it'll prolly take a few years to set her right again.

I wanted those of you who have suffered with fibro and other chronic pain disorders to help me write a letter to her. I want her to hear your stories, your symptoms (especially if it involved constipation and bloating!), and how long it took them to resolve. I want her to have hope for recovery--for feeling GOOD for the first time in decades--but also realize that it will take time for this to happen, and there'll be ups and downs. I want her to know how important it is to be strictstrictstrictly gluten-free. I think the only thing she'll really miss is her crackers that she eats, but I'll help her find/make a good replacement. Having me gluten-free in the same town starting in May will help her I think.

Yeah! I need her to get up and go get tested. I had to have gotten celiac from SOMEWHERE. Can y'all help?

edit:

Her initials are V.W. if anyone wants to personalize it

While this is a very sweet and caring idea that you have, you would be better off writing to her yourself and then letting it go. All of your ideas of what to say to her are fantastic and oh-so-true but you need to be prepared for the fact that she may not be interested in being diagnosed or going strictly gluten free.

I wrote a letter and mailed it to all my first and second degree relatives when I was diagnosed 6 years ago this month. Many of my relatives have symptoms and autoimmune diseases which are concurrent with Celiac. I thought it my duty to let them know that I was diagnosed and the need for them to be tested. I did not receive one single response to my letter and only a few of them (I have a large family) went and had testing done. The problem with testing is that there are a lot of false negatives but when someone who knows squat about Celiac gets tested and it comes back negative, they then proclaim they don't have it and never get tested again. We all know that is not the way to approach Celiac Disease and any testing for it. The rest of the family think I am crazy, even the ones who have flaming symptoms, so I let it all go and they can do whatever they want with their own health. I did my job of informing them and I am comfortable with that.

I think it's sweet you are thinking so fondly of your grandmother that you want to help her but write the letter and if she resists, let it go. You cannot force any one to go gluten-free...they have to get there themselves. Good luck and please keep us informed of what the response is. Do not get upset if she puts it off or won't get tested..that is all too common a reaction. Good luck!

[Cloelke]

I'm with you on wanting your Grandma to feel better. I want that for mine too, but they get to a point in life where to them it's to hard to change what they've always known. I've always linked my Gma's stomach problems to her gastric bypass surgery some 20+ years ago. I know now it could be more but even with her other health issues she barely cooperates with doctors orders. She lost my Gpa after 64yrs of marriage 15mths ago and since then limits the amount of medical intervention she wants. I say things to my Mom that maybe Gma should do this or that and she says she won't do it. Bascially if they are happy feeling bad then you have to let them be. The older they are the less likely they are to change. My gma loves to bake and is an awesome baker! I'll miss that.

I have also mention my brother getting tested to his wife, but she doesn't want him to be hypocondriact(sp?)about something else. He always feels tired all time and gets sick very easy with just about everything. He has had thyroid cancer and has sleep apnea so he doesn't sleep well either. I also have a 2nd cousin who a couple a months ago was diagnosis with a severe vitamin D defecincey. She was trying to get a fibro diganosis and didn't and last year had possible gallbladder problems. I sent her a message and said it was me putting in my 2 cents and something to think about. Thats all you can do. Send the letter with love and accept her choices. It's hard when you just want to help people you love and they don't want to help themselves. Good Luck!

[Strawberry-Jam]

She wants to get better, I think! And she will get tested *eventually*... I just don't think she knows that her specific symptoms are linked in a strong way to celiac. I just wanted some people who share her symptoms to weigh in so I could tell her, "look, this person has this and this too, and got better!" My symptoms are somewhat different. But she kept asking me about constipation, wondering if the diet was helping me.... she's curious and just needs more info, so that's what I was hoping others could provide.

[tictax707]

It sounds to me like she does want to get better - especially if she has tried the diet at some point in the past. With you being near, you can both work through it together. I'm still with you in your logic, and if she resists, when then it is out of your hands... But I am hopeful for your both.

PS - many good cracker options out there too.

[T.H.]

But she kept asking me about constipation, wondering if the diet was helping me.... she's curious and just needs more info, so that's what I was hoping others could provide.

Okay, feel free to pass this on...as personal as it is!

Before going gluten free, I would have bouts of constipation that were so bad I would get horrific anal fissures. The toilet bowl would be deep, blood red after a bowel movement, during the worst times. Eating more fruits and veggies never worked, because I'd eat 'healthier,' which tended to also involve whole grain wheat products, too. Before going gluten free, I had carpal tunnel, plantar fasciitis, tendonitis, nerve pain that would radiate down my neck to my arms and from my spine down my legs. I suffered from exhaustion, mental confusion, depression, constant joint aches and muscle aches that waxed and waned but never really went away.

It's all gone now. Constipation - gone. Almost all the nerve issues, aches and pains are gone now, and the ones that aren't are slowly fading. They flare back up if I accidentally get gluten contamination of my food - I understand that many people with neurological symptoms tend to be more sensitive, at least the ones I've spoken with. I have energy for the first time in years. I can think again.

It feels like I've been living under some black fabric cover for decades and suddenly it's gone, and I"m looking around at the world and I'm amazed at what it's really like. It's a much brighter, less pain filled place than I knew. And honestly, it's been wonderful, no matter what restrictions this new life style has brought.

[Gemini]

She wants to get better, I think! And she will get tested *eventually*... I just don't think she knows that her specific symptoms are linked in a strong way to celiac. I just wanted some people who share her symptoms to weigh in so I could tell her, "look, this person has this and this too, and got better!" My symptoms are somewhat different. But she kept asking me about constipation, wondering if the diet was helping me.... she's curious and just needs more info, so that's what I was hoping others could provide.

Show your grandmother this site and let her read through some of the postings......if that doesn't do the trick, then she isn't ready to go gluten-free or get tested. Make sure you show her all the reams of delicious gluten free recipes and foods there are and that may ease her mind on how to go gluten-free!

[Medusa]

I grew up in a household with a dad who was severely gluten intolerant, yet it still came as a shock to me to find that my daughters had the same problem, and that lo and behold my symptoms improved when I took our whole little family down the gluten free route to avoid arguments and accidents. I guess that even having grown up with the condition - or because of it - I didn't want to accept that my daughters would bear this burden - and that it might have come from me!!!! Oh guilt!!!!

This is a wonderful site, and I'd certainly recommend it to your grandmother, sharing other people's experiences has helped me a lot in coming to terms with my own family's illness. As far as personal experiences go, in the one family we have had the whole gamut of symptoms from appalling diarrhea to chronic constipation, from tantrums to fits and coma, skin problems to depression, exhaustion and chronic pain. It's what makes coeliac such a pain to diagnose. We have all tested negative at one stage or other, but all feel 100% better on a gluten free diet. I found that after an initial honeymoon period, I actually felt a bit worse before feeling better again - this might explain problems in sticking to a gluten-free diet. A close friend has related her experiences where the testing of an ailing baby (positive) resulted in the whole family going for tests, and her aunt finally coming off painkillers for her chronic rheumatism after years of unsuccessful attempts at treatment. Going gluten-free can be life changing,, but you have to be really motivated, and you can't do that for her - just point her in the right direction! Good luck!