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Ursa Major

No Support At Home

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Things at home are getting harder all the time. I have virtually no support in being gluten-free here.

My oldest daughter tells me, that I am being ridiculous in how careful I am about cross-contamination. She tells me that she has a friend with celiac disease, who thinks that it's crazy to have separate can openers and dish brushes etc., she doesn't get sick from things like that, and I shouldn't worry about those, either.

My second oldest daughter has a mother-in-law with celiac disease, who eats gluten-light things when she feels like it, not believing that it does damage. My daughter has been diagnosed with a wheat intolerance (and I've suspected she actually has celiac disease for a while, but she won't believe me), who eats wheat regularly, claiming it's no big deal. She did stay mostly gluten-free during her pregnancy, because, with two grandmothers with celiac disease, she wanted to be careful. But she says that her milk doesn't appear to be causing little Zoey (four months) any harm, therefore it should be okay. She also thinks I am being too paranoid and should 'loosen up' a bit.

My son stays out of it.

The next daughter has a boyfriend who has a mother with celiac disease. This mother bakes all her families bread (with gluten), and makes pancakes for them every Saturday morning (there are 14 kids, three of them adopted and two foster kids, the two oldest ones are married and don't live there now). So, Janet gets very angry with me when I tell her she can't bake in my kitchen, claiming that Ben's mother does it all the time, and she is fine, and I'm just being a pain.

Susie (14) thinks I am being silly with a lot of my restrictions.

My husband leaves his crumbs all over the kitchen and will regularly cut his gluteny bread on my cutting board. Which has deep ridges in it (it is plastic) and there is NO WAY I can get all the gluten out. I told him I'm buying myself a new cutting board, and he says that I am being ridiculous and wasteful, since washing it should be enough, and we can't afford to keep buying new stuff because of my paranoia.

Of course, predictably, I am not really getting better. It's now nearly a year, and I am far from well.

I lost thirty pounds initially after going on the diet, but have gained back ten. I've been 220 lbs now for many months, not losing, but not gaining, either. My husband constantly complains about me not losing any weight (that's all he cares about when it comes to the diet, I am definitely worth less when I'm overweight, in his eyes). He claims that the problem is, that I'm still eating chocolate. He constantly asks me how much chocolate I eat, and that I need to stop eating it to start losing weight again.

Yesterday I saw a naturopath. He said that my bowels aren't healed yet, and I have stopped losing weight because I am still malnourished (he says that one symptom of malnourishment is weight gain). I told my husband that, and his answer was, "Did you tell him about eating chocolate?"

It is upsetting and discouraging, and I'm at my wit's end.

Anyway, I am not sure if any of you can really help me, but I just needed to vent.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Ursula here's a (((HUG))). Do you still have plans to leave? Have you given any more thought to that?

I'm so sorry about your family. Surely they must see how you suffer if you eat gluten or other foods you are intolerant to. I wish that I could help, but with so many bad examples of other celiacs close to them, I guess they just don't want to get it. :(


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

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I'm sorry Ursula.

I'm sure the only answer is to throw them all out so you can live your life in peace, but I realize that's not very realistic.

I don't think you'll ever change their minds, so my solution would be to just keep buying new things as you need them. Since they aren't concerned about your comfort, stop being concerned about theirs and use the family resources to make yourself healthy.

I don't do that internet hug thing, but I'm sure a lot of people will.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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I am sending hugs, and support & I will send my reply later. I am at the office right now & I could write you a book of instructions. In the meantime have a piece of chocolate which is nobodys business and do something else nice for yourself & just know that you live in the midst of a bunch of morons.

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I'm sorry Ursula. I would say not to talk about it with your daughters. Just say that you appreciate their concern for your wellbeing and that you agree to disagree with them on your treatment. You appreciate their input, but those other celiacs they mention are feeling good, and you are not, so you are doing all you can to heal.

As for your husband, before I bought a new cutting board, I just cut my personal food on a plate. It worked. Then there's no argument. As for his concern for your weight and not your health, that is a defiency of his character, not yours.

You are in a bad situation which is not helping your health a bit. Have you decided whether to spend a few months in Germany?


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Oh, Ursula, I'm so sorry things have been so rough lately. Please know that I am thinking about you and praying for your health and well-being. You are such a lovely woman, it's a shame that your husband and family aren't being supportive. Lean on me anytime you wish.


~Angie~

Gluten free since May 2004

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Hugs Ursula... It sounds like those other celiac people are causing a lot of harm to a lot of people by giving harmful advice. I can't even imagine how frustrating that must be for you. With such incredible lack of support, I'd be think about getting out of there for a while too. It may be the only way that they'll be able to see that you HAVE to be completely gluten free once you come back feeling great.

Heck, you could even rent a small studio apartment down the street just to keep your food and cooking stuff in. Get a six month lease (some places even have month-to-month leases) Go there just to cook and eat. If you start feeling better doing that, that's proof. With just you there, there will be plenty of cabinet space for chocolate. (I can't frigging believe he said that! ARG!!) It'd be cheaper than going to Europe in the long run. Plus, you wouldn't have to share a darn thing with anyone, even well-meaning people. Tell your husband that it's cheaper than a divorce too.

I was able to be the only gluten-free person in my house at first, but I also had very small kids who I could keep out of the kitchen, so it was much easier than all those people with their gluteny fingers all over your stuff all the time.

If you're planning on staying, there are some things that I did that made my solitary gluten-free life easier. I kept a seperate cabinet with all my gluten-free stuff like my cutting board and cooking utensils. If you don't have room for that, you can keep it in a box in a closet or something. The extra effort it takes to do that every time you need to cook something for yourself might be worth it in the long run. I also kept a couple of hooks up above my sink where I hung my personal dishtowel and dishrag. I always kept gluteny ones in the same place they had always been so my husband wouldn't use mine. I was forever washing my hands too.

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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Ursula,

I'm sorry you are being put through this by your family.

I'm not to pleased about all the misinformation that your children have been fed from others.

Do what you need to do to take care of yourself and heal.

I would think your daughters would see how sick you are and realize they could be in the same spot x number of years down the road.

It wasn't until my third child that I was alerted to this due to his eczema break out and my going through allergy tests and then enterolab. Myself and my two oldest children tested positive through enterolab. I'm sure my infant son would have too.

Is Zoey, this daughters first child? Pregnancy can be a trigger and I'm thinking it may have been with me. Otherwise it was the vegan diet with lots of gluten and soy that tipped it into active state.

A big cyber HUG for you.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Oh Ursula ((((((((((()))))))))) I am so sorry you are having these problems. I have a weight problem too. And now that I am gluten free, I gained even more weight. When I was at my sickest, I was down to a size 16, the woman altering my wedding dress said I better not lose anymore weight. Boy would she be eathing her words now.

I am terribly sorry you dont have the home support you need. I think we all need at least someone to understand. If your kids dont, then at least your husband should. I thought I was understanding here that you were thinking of leaving for a bit? Maybe that would be a good idea. You need to worry about you and take care of yourself. If you are sick constantly, you arent doing anyone any good

And about your husband with the chocolate thing. Smack him upside his head. You take your chocolate and enjoy it. We all have sooo many restrictions, if chocolate isnt one of yours, you go right ahead and enjoy it.

If you ever just need to talk or vent, please feel free to pm me.

I will say an extra prayer for you tonite. Keep going girl, you are a strong, attractive woman! and dont let anyone tell you different!


Stephanie

Gluten free since October 05

son born severly premature due to

celiac

"True love stories never end" Richard Bach

"Did you ever stop thinking and forget to start again?" AA Milne

If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you" AA Milne

Swimming Instructor #2 and Town Crier of Rachelville

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Guest ~jules~

I'm really sorry. :( You know I can see children especially teens not being considerate in this, which still is no excuse. Its the husband that really gets to me, not being supported by your spouse makes things harder and hurtful, I am truly sorry for this. I don't know that any of them will come around. It like I was telling my mother last night (she's diabetic) people just don't truly understand something until they have gone through it themselves. 'That being said, they could at least "try" to be more supportive of their mother and wife....Hang in there ursula....hopefully things will improve...

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Oh my. I can understand with so much negativity, why you'd be discouraged and need to vent!

Any chance that you can hang out with your son more??? ;)

I wish that there was something that could be said or done that would help this situation. It's just so sad to hear you aren't getting the support that you need when you do so much to support everyone else around you. This lifestyle can be difficult to deal with....and it's not helpful to have to drag the rest of the family along behind you. That makes for a lot of dead weight.

If it's of any consolation....I have the same issues with my mother, sister and aunts and uncles. Surprisingly, my dh and mil are perfectly capable of "getting" this and don't nag me on every little point. Dh did make a fuss about my weight prior to going gluten-free/dairy-free but since going on diet, I've lost all the weight he complained about. But it's taken more than a year to do. And I eat plenty of chocolate....I just attribute it to being off gluten completely (if I get an exposure, I gain a pound or two overnight....seriously). You need for them to understand that your case is not the same as their's or their friends' cases. You need for them to understand that you have to give this a real shot to see if it will work. And then you need to ask them if they would like to be nagged, berated and put down during a time when they were really struggling in life. Perhaps they can stretch their imaginations and try to conjur how they would feel if your positions were reversed. And perhaps they would like to start treating you as they would like you to treat them?

I hope that's not wishful thinking (but if it were my relatives...it probably is).

Hang in there and kick everyone out of the kitchen!


Vicky

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Guest AutumnE

Im so sorry you are going through this :(

I dont have hardly anytime today to be online but I had to respond. You are such a sweet and helpful person it hurts to think of you having such a hard time.

I havent had the greatest response from my husband either. All he wants is the diarrhea to stop and the weight to come off. And he does make comments about the occasional m&m's and treats, heck so does my mom, dad, and sister. But I have always had negative remarks from all of them. I feel so deprived sometimes as it is I need the occcasional treat.

He doesnt think about when he touches the meat after he touches his bread because he would never conform and eat mine and I dont know about it and get glutened. We are on a very strict budget here also as a matter of fact we are moving to free up money for us. I havent bought many separate condiments , I just buy only squeeze bottle ones so a knife doesnt touch it. I separate the meat as soon as its cooked in my special containers. If its quite a bit I freeze a plate for later and label it mine, if dh doesnt like it I dont care. I separate the lunch meat as soon as I bring it home from the grocery store.

Dh doesnt cook so it saves me there with him touching everything. I cut everything on my plate since I havent had the money and wont for at least until after christmas to buy a new cutting board.

With regards to your 14 year old unfortunately it sounds like a typical teenager. Im not sure if I would have understood at that age.

Are your other daughters grown and moved out? If so they have their own kitchen to cook in and shouldnt be concerned about yours. Its your home and you need to feel safe in it. Goodness with this disease its the only place I can feel remotely safe to eat. Thank goodness your son is being understanding.

I dont encourage a separation too often but maybe a nice vacation for you to germany would do the trick. I'm sure it wouldnt take long at all for them to realize how hurtful they have been to you and appreciate you more. If they need more understanding (if you are comfortable with it) send them to this message board, I know these members would gladly help them understand how difficult this problem is.

Me and my daughter are the only ones getting tested. Nobody else chooses to in family even though its very obvious to me that my sister, nephew, and mom probably have it. But none of them would ever change their ways of eating for it. It upsets me but its them, the one it upsets me most about is my 6 month old nephew. But since he's not mine I cant make her do anything about it.

Also do you have insurance for marriage counseling or do you belong to a church where you could get free counseling? We started it and it already feels better to have a mediator and get my feelings out. I havent shared any of my problems about my husband in real life because it just wasnt the way things were done in my home and his parents home so they wouldn't understand and its nice not to have to bottle it up anymore.

I am always washing my hands also, I had to change soaps since my hands were dryingout and breaking the skin.

If you ever want to talk or pm me feel free, Im going through the same problems at home and would gladly be a shoulder to lean on for you if you need one :) (hugs)

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Sorry to hear about your family's lack of support.

Unfortunately, it sounds like another case of people think they know as much as a G.I. doctor when really they know nothing at all.

With regards to the other people with Celiac that don't feel quite as bad when they ingest things that contain gluten, just remember, it will catch up with them. If they have "silent celiac" and no outward symptoms, they will pay an unfortunate price down the road.

Personally, I do think the cutting board issue might be a little extreme - as long as you handwash it and machine wash it, it should be fine - however, plastic cutting boards cost less than $5, so if it makes you happy, I think you should buy one (or two).

Try to stay focused on your health and your body. No matter what happens with other people, remain vigilent about "you". If you know you are going somewhere where gluten could be a problem, eat first, bring something with you, or simply go without. I have gone without eating several times (and I weigh 230 so you know I was hungry - LOL)

Also, the more you conflict with these people about this, the more irritable you will become. Some people simply do not want to learn and accept science for what it is. Avoid the situation by being proactive. Big Dinner? I already ate...Going to a restaurant? Call the place before hand....No time to call ahead? Get a burger no bun, salad no croutons or a steak and baked potato....

I know a lot of this is repetitive and mundane, but THIS IS YOUR LIFE!!! Don't feel bad or compromise your health for anyone. In the same breath, you have to live with these people and interact with them. Therefore, I have found it easier to make my food first in those instances and then make theirs.

As far as weight gain is concerned --- For some reason, many doctors neglect to tell their celiac disease patients that after you become "healthy" again, you will gain weight. When I was first diagnosed, I lost 30 pounds. Over the years, they have come back to me. My only solution is regular exercise and watch your total carb intake! - You gotta do something -- walking, running, exercise bike, anything! Its gotta to be 3-4 times a week at the minimum and you gotta get your heart rate up. Otherwise, you will continue to gain weight.

Hope this helps! :)

Bronco

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FIRST: {{{HUGS}}}}

SECOND: {{SUPPORT}}

THIRD: {{{LOTS OF GOOD THOUGHTS}}

I'm happy to offer up a few prayers, too, but you'll need to advise me what might be realistic to pray for here. I always worry that I'm annoying God if I ask him to make a total jerk more kind and sensitive. :D

As far as your daughters are concerned--you've done what you can to educate them. The rest is up to them. They'll have to find their own way and make their own mistakes, and they still might never really get it. :( To put into Biblical perspective, it's kind of like when God told Adam and Eve the rules,a nd they broke them and had to deal with the consequences. I know it pains you to think of the consequenses for your children and grandchildren, but it is beyond your control at this point.

You can control your own diet, though. Balancing that with your kooky unsupportive family is a very tough act, though.

I'm about to suggest something that I imagine would be very difficult for an Aspie: can you try to put a nice face on it? Smile sweetly at Janet and tell her that of course you would LOVE for her to bake in your kitchen as long as she follows your crazy rules? That you know she will think they are crazy, but everyone has their own issues and their own comfort level, these are yours, and you will be happy to do any washing, provide any gluten-free ingredients or recipes, and that you'd be happy to be her sous-chef and chop and wash up for her, etc, and maybe the two of you could enjoy some coffee together while she plans out her menu with her and you write down a gluten-free shopping list so that you could provide her with all the ingredients that you feel safe with, etc...

The key here is to think of it as a role you are playing in a movie or on stage. Aspies frequently come off as total control freaks when they are just trying to be logical and structured. You want to be extremely sweet and not-controlling-sounding to her (never mind that she is being a total idiot here, you have to socialize with her, right? so you have to pretend that you think she's just charming even when she is undermining your efforts to be healthy).

Now the ball would be in HER court--if she doesn't want to follow your rules, she's now the one who has to be a jerk and say, "Well, I won't if I can't do it my way!" and then you can say, (still sweetly,)"oh, I'm so sorry you feel that way. Do let me know if you'll change your mind and then we can have a good time making whatever it is that you want to make (with my gluten-free ingredients)!"

Now about the chocolate. I'm the world's worst chocoholic, so I can't possibly judge you here. I do wonder, though--how much chocolate are you eating.? Is it just a few chips a day, or are you going through half a pound a day? (Don't even wonder how much I consume, I don't even want to know how much I consume!) My point is, maybe--even though I think your husband is a total jerk--he might have a point. Is it possible that you might be consuming a weeny bit more than is good for you? I've noticed myself--too much can give me diarrhea!

Anyway, regardless, I hthnk you should keep your chocolate stash in your purse (away from prying eyes), eat it when you are in the bathroom (in private) or in the car by yourself, and brush your teeth a lot!

Sometimes chocolate can be the only thing between us and loss of sanity! :D

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Sorry Ursula {{{{{{{{{{{big hug}}}}}}}}}}}}}}}}}

We sure love you here. Don't let their comments get to you. I think they probably see how limited your foods are and they think they can get you to give in, like well its not working anyway. Let me tell you, your the strongest person I know on this board. Your will power blows everyone away. I could never eat like you.

I'd be eating chocolate by the truck loads. Besides your not doing this for you husband. Forget him your doing this for yourself. You can't let him bother you, I'm serious try not to think about his comments because it will only be distructive to your health. Your daughters, well when I was in my twenties I was still pretty self centered not having a whole lot of life experinces behind me yet.

You can do this Ursula don't give in or give up, keep looking up.

Gail


Gluten Free since Jan. 06

Gluten intolerant. DQ 0301 DQ 0602

Lactose intolerant.

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Ursula, I am sorry your family is filled with donut heads. Just because other people don't care about stomach or colon cancer. Just tell your kids etc., that if so and so's mother wishes to comit a slow painful suicide that is their perogative but you are not planning on it and you don't appreciate their attempts to murder you also. It is too bad you can't charge them with attempted murder.

They are being plainly ignorant about everything. I guess the thing that drove it home for my family and friends is that I told my mother that a little wasp bite wouldn't hurt her or me considering we would both die in less than ten minutes My friends and my sister-in-law I said that, if they went without insulin it would not be so bad. They got the idea pretty quick.

I wonder if a lot of their poo pooing is because of their father. The woman who still makes gluten filled food for her family, in which probably many of her family could be Celiac. She might as well bury her face in a bag of flour.


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

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i couldn't imagine not having the support of my family through all of this celiac madness. you sound like you are incredibly disciplined and are trying to maintain your health for your family--even if they are giving you grief the entire way.

as for their advice, my grandmother was told last year that she didn't need a pap test every year because she was over 70. today, she was biopsied to determine the extent of her uterine cancer. you have to do what's right for your body--even if someone else thinks it's overkill.


Diagnosed Celiac in February 2006

Villus blunting and positive blood test

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Ursula, I am so sorry you are having these issues to deal with. I think hanging out with your son is the best idea. Let the others stick together if they want. We are all on a mission here to live a good life. A life that does not include extra stress and dirty birdie remarks. You are so helpful to us all and we need you to take care of yourself-we care about you. TAKE CARE OF YOURSELF. Don't listen to the enemy. God wants you to be healthy and happy. We do too!!! Love , Lee


Lee

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Ursula, I am so sorry you are having these issues to deal with. I think hanging out with your son is the best idea. Let the others stick together if they want. We are all on a mission here to live a good life. A life that does not include extra stress and dirty birdie remarks. You are so helpful to us all and we need you to take care of yourself-we care about you. TAKE CARE OF YOURSELF. Don't listen to the enemy. God wants you to be healthy and happy. We do too!!! Love , Lee

Ursula I do feel for you!! And am sending oodles of prayer your way. Could it be that dd's feel it is safer to back their father/ ridicule rahter than be supportive of you? I certainly do not know a good answer for your situation but a poster said compare a diabetic or etc illness to Celiac, might work. Since some inlaws treat celiac so lightly it must be the dd think the etc celiacs do it right..hahah. :blink: I am glad you posted, it helps to vent and maybe you will get a good idea from here!! I WANT you to take care of yourself best way you can..am sure your higher power wants that too. I feel so fortunate to have dd (3) supporting me + hubby most of the time. If I get an unkind remark I turn it into comparison on 1 of his problems. I do believe this celiac has brought us closer, he thought I was gong to die in March 06.

Don't ever forget how valuable a poster you are here, you have helped so many people..me too!! :) hang in.. evie :)

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Thank you all for your encouragement. Unfortunately there isn't much I can do at this time to make things better. John, my son (23) is so busy, he hardly manages to have any time for his wife (who is pregnant with their first child). He works nearly full time at Staples Business Depot (where he fixes computers), works 15 hours as our youth pastor (in reality its always more than 15 hours), studies theology part time (classes all day Thursdays, plus of course homework) and teaches several hours of guitar lessons a week, as well as leading worship teams in church and leading two bible studies. Are there enough hours in the week to do all that? I haven't counted (maybe God is granting him a few extra ones? :huh: ). Plus, they have a dog and a cat, and I am severely allergic to them, meaning, I can't visit them at their house, anyway.

I told Janet (21) that she can only bake in my kitchen if I am away overnight, and that she would need to thoroughly wipe down the whole kitchen if she uses flour. Last weekend, when her boyfriend stayed at our house, she made waffles for them. Afterwards she wiped the corner of the table she used to mix the batter. That was it. The waffle iron is still dirty (I cleaned it last time, and just can't get myself to do it, I look at it and it is DEFINITELY not calling my name :rolleyes: ), I did wash down the counters and the rest of the table myself. My husband thought that just cleaning one corner of the table was quite sufficient and doesn't see my problem.

Unfortunately, that brat lives at home, and has been for a year and a half, after she was away at college for two years. When she was finished studying photography (living a nice, long 2 1/2 hour drive south-west of us in London, Ont.), she moved back home. She makes it very clear (and has told me so), that she doesn't like living at home, that she is sick of me, but she lives here because it's free and convenient. My husband agrees when I talk to him that she ought to contribute either financially or with housework, especially because I have no energy at all. But he won't enforce it with his favourite daughter. Those two are like two peas in a pod.

Sarah (26) lives with her husband and five kids in Ottawa, a 5 1/2 hour drive north-east from here. Meaning, if I visit, I have to stay for several days, as I don't have the energy to drive back and forth too close together. But I really don't have the energy to be with her, either, as she expects me to do all her housework and look after her kids for her (cooking my own meals, and helping her with theirs, as well as doing her shopping), while she has the naps I desperately need. I love my grandchildren, and they're always complaining that I never stay 'long enough'. But it takes me weeks to recover from visiting them (not that I can ever really recover here at home, either).

Karen (25, Zoey's mom and yes, she is their first baby and a sweetie), isn't too bad (even though she sees her mother-in-law cheat on her diet continuously, and does it herself). But they have a dog, and my allergy to her is so bad, that five minutes in their house is enough to cause an asthma attack. They live an hour and a half south-west from here. I can only visit them when the weather is nice enough to sit outside, and can never stay over night.

And Susie, well, she is, as somebody pointed out, just a typical teenager. Our visitor from Germany (the 17-year-old girl) told me on the way back to the airport, that Susie never said anything negative to her about me, and seemed to be very supportive of my issues (just to my face she can't admit that, I guess :ph34r: ).

I think Janet is likely going to marry next spring (I am really hoping she will). So, even though she is hateful and makes my life hell, she is my kid and I have to be there for her wedding. Fortunately, she wouldn't want me to help her with anything, as my ideas are 'no good' anyway. Which is fine with me.

I hope she will be married and gone before school is out next spring. Because I want to take off to Germany for about six months before the airfares get so expensive for the summer holidays. I already talked to my sister, who is excited to have me stay with her while I am there (or at least have my headquarters with her). She just got divorced from her jerk husband and has her own apartment, which is no doubt big enough for us both.

Of course, nobody in my family here knows about those plans. It would be foolish to tell them.

Alison, I am only eating dark chocolate. Sometimes I don't have any at all for a week. Yesterday I felt so upset that I ate two Ritter Sport chocolate bars (okay, it's comfort food). But I usually don't do that. It's my only treat (besides the odd sesame snaps, which are too high in salicylates to eat too many). I don't eat (or drink) anything else containing sugar.

Really, I can't imagine it's enough to stop me from losing weight.

Bronco, I don't know if you have kept up with Carla's issue with adrenal fatigue. The naturopath I saw yesterday told me, that really, there is no doubt that is one of my issues, too. Meaning (and he agreed with me) that I am unable to exercise more than just very gently and very little, as exercise will deplete the adrenal glands even more, and zap me of the teeny tiny bit of energy I (sometimes) still have.

Anyway, I should have been in bed hours ago, I am utterly exhausted.

Thanks again for your concern everybody and for your prayers, you're awesome. You don't know what it means to be able to come here and know that at least there is one place I am appreciated for who I am, with people who love me (even if you don't know me personally).


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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You know Ursula, you really are a strong person. You may not see it right now, but you have a lot on your plate and deal with it without much complaint. I'm glad we can be here for you. My husband is glad I found this forum for some adult companionship since I'm home with the kids all day and don't usually get out.

I hope that everything works out to head to Germany for a spell. That would be great for you. Hang in there and don't feel bad about the chocolate. That little bit is not going to keep the weight on. You have so many diet restrictions, I wouldn't feel the least bit bad about the occassional chocolate.

Keep your chin up and thank you for being you, the kind, caring person who means a lot to those of us on this forum.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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I can so relate to what you are going through Ursula!

I stopped eating gluten 4 months ago. My husband and I live with his family right now, but hopefully we can move next year. But as is now it is VERY hard for me to be gluten free and get any understanding in this house. There are like 6 gluten eating people here that do not wash their hands and stuff.

There are crums all over the kitchen usually. They put the spoons in gluten free food on their plates when they take food and put it back in the pot, so I end up not being able to eat it. They eat pizza and pie infront of me expecting me to be very happy about it, but if someone else missed out on something they want there is a big fuss. (Not that I expect them to eat gluten free food, it is just the way it is done.) In general there is almost always something put on the food so that I can't have it (spice mix, breading..)

Then if I am making gluten free brownies for everyone they will not even taste it.

My sister in law told me being gluten intolerant is just the body getting too much gluten for a while and with a little bit of rest from it I can start again. I told her that that isn't true and she got mad at me. She knew because she has read this one book about "you are what you eat" and has a friend who is some eastern medicinist or something...and that freind is good about these things. What ever that means. Pretty insulting anyways.

My husbands brother told me he could never be gluten free if he were intolerant. He would just take the symptoms and die if he had to. Yeah, very nice to hear too. Like there is a choice really. Like the symptoms are so mild I could keep on eating gluten and like it is okay that it still damages the body. I dunno, it just seems so "tastless".

People do not have any understanding at all, no interest to make things safe for me to eat with them..so I make my own food and eat before they do most of the time, which makes me feel even more left out that I already do, but at least I will not get sick so often.

I absolutely hate it. It isn't making the sadness over that I can't eat regular food any better. Some days are better than others, but I long for the day we can move out of here.

I think the hardest thing is that they think I am just being stupid about it all. Like they think I can just stop eating bread and then I am fine.

Well, so I can relate very much.

My husband is very understanding and interested luckely. I think he will most likely not eat much gluten once we get our own place. He will probably eat my food with some bread and stuff added on to it kinda.


One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).

Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)

Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

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Hi Ursula,

Sending you hugs and this:

http://img.villagephotos.com/p/2005-12/1116660/chocolate.gif

;)

Hang in there. What are your plans about leaving. Did you change your mind?

Hugs.

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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I told him I'm buying myself a new cutting board, and he says that I am being ridiculous and wasteful, since washing it should be enough, and we can't afford to keep buying new stuff because of my paranoia.

You are not buying it because of your paranoia, you are buying it because of his lack of respect for you and refusal to take even the most basic precautions.

From everything you have said before his lack of respect is not limited to you and extends to your Church Elders etc. and I can't see in a million years how you will ever win respect from someone who doesn't respect others.

I believe it is the JOB of your pastor to explain this in a general sense, not specific for you. I also believe that his lack of respect for others is based on a lack of respect for himself and he justifies this by "the end justifies the means" and hence he takes out his lack of respect for himself on others and justifies it by scripture taken out of context.

This too is the job of your pastor.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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