How To Teach Family Members About Gluton Intollerance?

[Guest happynwgal]

First: I just joined this forum a few weeks ago, and I am impressed with and have been greatly comforted by what I am reading from others about their experiences with gluton intollerance/Celiac Disease.

I am 54 and have been sick since I was a little girl with "food intolerances" which only got worse as I got older. For a while I thought I was eating too much, and cut back, but that did not help. About 20 years ago I started realizing that it was not how much I ate but WHAT I ate - I did many different elimination diets, but nothing helped.

I was getting sicker and sicker, and had stomach aches, diarrhea and other debilitating symptoms 24/7. The less I ate, the better I felt, but I never felt well - after a week or two, I would always get sick again, without my understanding why. The past 10 years have been so difficult, I almost wanted to give up - I was sick, lost a lot of time at work (I am a single mom, I HAD to work as much as I could), my body had aches and pains I could not understand, and I suffered with depression and anxiety that I just could not get rid of. Since I also react really bad to a lot of medications, many anti-depressants only made me worse.

Finally in August 2006 I saw some light at the end of the tunnel when I was diagnosed with hypothyroidism. I started medication for that, and felt better. However, my digestive track was still a mess, and finally, after trying a lot of different diets, I thought in desperation: avoid gluton.

So after going gluton free for a month I asked my doctor if there was a test for gluton intollerance, and she said, yes. And guess what: BINGO! I have never been so happy to find out what was wrong with me! Now I am feeling better than I have in years, but I still have one BIG problem: to get my family to understand how serious gluton intollerance/Celiac Disease is. (I find it disturbing that of all the doctors I have tried to get help from over the years, NONE of them suggested a test for gluton intolerance.) By the way, I decided against testing for Celiac, because the treatment for both Celiac and gluton intolerance is the same - stay away from gluton, however, I am pretty sure I have Celiac because of the length and severity of my symptoms.

I just received a letter last night from my 20 something and I thought, INTELLIGENT, son, where he blasts me for being so "sick" for so long. It really hurt, because he thinks I am lazy, and have been unwiling to work the past few years (not true - I have a very good job and am firmy planted in the "middle class" - but he is right: I have lost a lot of time because of my two diseases....) I am stunned and very upset. I did not choose to be sick - but now my recovery is questioned by somebody who I would like support from, rather than have him work against me...

My two daughters are more supportive; one still lives at home, and we suspect she may have a thyroid problem, so we are going to have her tested, - the other one, my oldest one, was diagnosed with hypothyroidism three years ago, - none of my three kids have gluton problems as far as we can tell...

How do I tell my unsupportive family members how sick I have been and get them off my back about this? My ex, who is very sick, is part of the mob - he also thinks I should do better - because he is dealing "better" with his heath problems that I supposedly am... Anybody else experienced the same?

Thanks for "listening"...

[stef-the-kicking-cuty]

Dear happynwgal,

first I want to welcome you to this message board. I'm surprised, nobody answered yet . But then I remembered, today is superbowl, right, so not many people may be on here. I for my part could care less. I don't even know, who plays...

Let me tell you, that you are not the only one out there with the "family-understanding"-problem. We have tons of people in here, that have the same problem. Which is kind of a pain in the behind. Not only to you, but it can get a pain in the behind also for your relatives. Since there is a high chance of 1st degree relatives to have the same problem you have. I don't know, how high the percentage is with gluten intolerance, but with celiac, there is a very high chance of 1st degree relatives also having it. So your son that thinks, he is so clever, might also have it . So they shouldn't tease you, they might have a similar problem themselves. My intention at the beginning was: First, try to make them understand. Second, if they don't want to understand or ridicule me, shut down the friendship. Yes, that might sound harsh, but it's about our health and life here, not about their life and their fun . Most people, that mob you, like your ex, secretly do NOT do as well as they want to make you believe. More the contrary, they are not satisfied with their lifes, but don't want to admit it in your presence. So they make you believe, they are doing great. And because they don't do that good, they are jealous about how you are handling it and try to make you miserable. Just my two cents: He is your EX for a reason. If he b%$@#es, shut him out of your life. It shouldn't be any of his business anyway. It's better for your nerves and better for your health and you need to recover and relax now.

Oh, there's another thing, it's not gluton, it's gluten, with an "e" in the end.

So make yourself at home, grab a cup of (fill in, what you like) and read a little bit on here. It's very interesting and at times it can be funny, too . If you have any more questions, don't hesitate to ask. With this celiac problem there are all kinds of embarrassing things, that one could ask, but we are already used to it. So keep it coming...

Hugs, Stef

[Creative-Soul]

Welcome to the board! Glad that you joined us and that you have gained some comfort in reading about some of our own experiences.

Weekends are usually a 'slow' time around here; most people tend to post during the week, so hang tight! You're sure to get a flood of hellos and advice from tomorrow on!

[debmidge]

Hi welcome. Couldn't come back on until dinnertime was finished. Yes, many are going to be glued to TV set and not here on forum.

My husband has celiac and I enter the info after I ask him (he hates computers).

Anyway he's been awful sick (me saying this)....and shunned by a lot of so-called friends and his family (to a point anyway). It hasn't been easy communicating celiac but we try. It's often unimaginable to those who never heard of it....I too was skeptical years ago when I heard about wheat/gluten intolerance. I thought a gluten free diet was a fad for crazies. Boy was I ever wrong.

Are you feeling better on a Gluten Free (gluten-free) diet?

Don't let the non believers get you down...they'll come around when they see the diet's results.

Tell me about the reaction you get from anti-depressants? My husband gets bad side effects from them too...

Deb

[cathzozo]

Welcome to the board! I didn't have big problems with support from my family luckily, but I just wanted to jump in and say that it's a good idea to just not bring your health and gluten up with people who give you problems about it. For whatver reason (most likely their own hang-up), they can't/won't deal with it. They will be more supportive when they figure out their own problems.

Also, I wanted to say that your two daughters might well benefit from removing gluten as well. My mom, three of my aunts, and my grandmother are all now eating gluten-free and their (and my) hypothyroidism has been improving. It appears that the reaction to gluten was causing the thyroid problems among other things. My mother, in fact, has returned to a completely normal TSH with no medication by following the gluten-free diet, but she never had any traditional gastro symptoms. Your daughters can either go through testing, or just try out the diet.

It's something that your son, as well, should keep in mind and know about and probably get tested for or try out the diet, but in his current state of aggressiveness I wouldn't push it. Maybe in a year or so, he will notice what a difference it has made for you. My brother is like that. It is completely clear to everyone else that he CLEARLY has celiac, but he won't even consider it right now. You can't force this on other people.

Anyways, good luck! Keep reading and posting here. It's a hard diet to figure out the details of at first, but it does get easier.

[Slackermommy]

Welcome and I am so glad for you that you found the answer.

And I am sorry about your family. I can only relate in the way people treated me before diagnosis. I think they all thought it was in my head. Or, I was a hypochondriac. You just have to be sure within yourself, and know that you are doing the right thing for you. Too bad if they can't understand, you are doing the best you can, and you will start getting better. You are the only one who knows how you feel; they can't know.

Good luck, and stay strong.

[happygirl]

From one happy to another, I wanted to welcome you on board!

I really am sorry that some members of your family are not understanding. Unfortunately, there are many people in similar situations on this board. Our society is not equipped well to deal with chronic/mystery issues. It can lead the sick then to feel crazy, especially when they don't have any answers.

Check out the book listed in my signature---written by a leading Celiac expert. It is geared predominantly towards Celiac, but a lot of its "coping with" and practical information apply to gluten intolerant people as well. I think that finding some good books like this will not only help teach you, but can help you formulate some ideas to tell your family (sometimes it is good to go to unconvincing family members with a doctor's word, instead of the "internet")

Best of luck and I am happy you have found some answers to your health. I truly hope that things improve with your family.

[stef-the-kicking-cuty]

I think that finding some good books like this will not only help teach you, but can help you formulate some ideas to tell your family (sometimes it is good to go to unconvincing family members with a doctor's word, instead of the "internet")

The book thing is a good idea. In fact I would let the book lie around, where they could find it and maybe one day, they might sneakpeak into it. Who knows.

That's also very true, that with the doctor. True but ironic, because in case of celiac it's exactly the doctors who mostly don't know anything and the "internet community" is more knowledgeable. However they don't know, so I also would do the doctor trick. Next thing I did was, that I told my immediate family, that I found a self support group for celiac on the internet, where they also have doctors in it. I meant you my friends (and they don't need to know ) It worked super!

Hugs, Stef

[SillyBoo]

I think one of the challenges in getting family and friends to take this seriously is that many people have a really tough time understanding how what we eat impacts our health. If you have a condition that requires surgery or medication, it's much easier to be taken seriously.

[stef-the-kicking-cuty]

I think one of the challenges in getting family and friends to take this seriously is that many people have a really tough time understanding how what we eat impacts our health. If you have a condition that requires surgery or medication, it's much easier to be taken seriously.

Which is kind of weird at the same time. How often did our mom tell us to eat our veggies? How often did we hear "at least 5 fruits and vegetables per day"? When you consider that we know, that healthy eating makes us healthy, it's actually kind of logical to know, that food influences us in a way, that can be bad for us. Or that some people react bad on certain foods. But apparently a lot of people have problems with thinking like that. That's weird, isn't it?

[Guest happynwgal]

To all of you who have answered my initial post: THANK YOU! And I do know that it is glutEn - not glutOn.

Even though I have not been formally diagnosed with Celiac, I am pretty sure I have it, but it has not been important for me to go through the testing - besides I am a bit scared of it, since I suspect the test could bring on some cramping for a while - and I am just DONE with cramping!!!

I wrote a letter to my son and copied and pasted a few things from some internet sites about Celiac - I hope he will understand, but if not, I will live my life and he will live his.

My nephew in Norway (I live in Oregon, but was born and raised in Norway) has Celiac, and my brother told me that he, also, sometimes has problems when he eats - I took my three kids to Norway last summer for the very first time so they could meet their Norwegian relatives. Years ago a cousin who I have lost contact with, could not eat wheat and eggs, but I am not sure if that was because of gluten/Celiac or not.

I will use this board to help me make a new life for myself - there is so much I need to learn about how to cook gluten free and how to eat a balanced diet now that I know what to stay away from. (I NEVER knew that gluten is found in so many strange things.... Like iec-cream the other day... who would have guessed?!)

And I will learn to use these boards better - my initial posting was moved to this part of the board...

Sigh...

Thanks again for all the responses!

[wowzer]

That has been the challenging part for me. My husband doesn't believe that I could have celiac disease. I do have a little sister with it. When I tried to explain the toaster, he figured I was going too far. I've only been gluten free since the beginning of the year. I have had many improvements on the diet. I do feel I'm more sensitive to gluten now. It is a definite learning experience. He is getting it in some ways. I guess we have to be patient in this learning process.

[Guest happynwgal]

That has been the challenging part for me. My husband doesn't believe that I could have celiac disease. I do have a little sister with it. When I tried to explain the toaster, he figured I was going too far. I've only been gluten free since the beginning of the year. I have had many improvements on the diet. I do feel I'm more sensitive to gluten now. It is a definite learning experience. He is getting it in some ways. I guess we have to be patient in this learning process.

I am sorry that your husband doesn't understand how sick gluten can make you. I agree with you - we need to be patient while waiting for our loved ones to catch to the fact that this really is not only difficult to live with, but could cause other dangerous diseases as well - diabetes comes to mind.

I need this board - I need to read about how others are learning, struggling and going through the same frustrating situations I am at times...

Good luck with your husband - I hope he comes around soon....