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It's Unfair


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21 replies to this topic

#1 dani nero

 
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Posted 09 May 2012 - 12:00 PM

Just found out hubs has tourettes. Very mild but it's there :-/ I don't love him any less, but what kindof children might we be having exactly? I'm not sure how to process this, but I thought it would be unfair giving them celiac and g6pd as it is, and now tourettes too. I don't know.. Am I being over dramatic? I do feel like freaking out.

Does anyone have any idea what the % to passing celiac is?
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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

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#2 pricklypear1971

 
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Posted 09 May 2012 - 12:15 PM

Hey Dani -

I'm sorry to hear about the DX for your husband.

Check out these fact sheets, they may answer your questions.

http://www.curecelia...ts4_Genetic.pdf
http://www.curecelia...actsFigures.pdf

If you lived in the southern U.S. any child of yall's would be called a budding writer :), terribly interesting....and a must-have for any dinner party.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#3 a1956chill

 
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Posted 09 May 2012 - 12:27 PM

If you decide to have children ,

Any children you have will be a gift :)

Raise them gluten free. Teach them the tools that they will need to be healthy .
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#4 ravenwoodglass

 
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Posted 09 May 2012 - 12:58 PM

Even if you do pass down the celiac associated genes that doesn't mean your children will develop celiac. Everyone has something or other that they would rather not pass down to their children. Think about all the positive things you have to give and teach a child if you want one in your life. Bad stuff can always happen but we do find the strength to carry on despite it. It is part of being a parent.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 IrishHeart

 
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Posted 09 May 2012 - 01:17 PM

If your sibling, parent, or child has celiac disease, you have roughly a 5 percent chance of developing the condition. That's miniscule.

Since my cousin's grandchild has been worked up for Tourette's and we have a prevalence of gluten intolerance in the family, with me being the first Dxed Celiac, I have looked into the connection between the two to help her out with information.

http://tourettes-sup...ettes-syndrome/

http://whattofeedyou...atment-and.html

http://treattourettes.ca/?page_id=57

You and dear hubs can go gluten-free together :), be healthy and have children-- as the gifts they are. Yours, healthy and loved.

Do not worry about what "might be," honey.
There are no absolutes in life.

A child is a gift, no matter how they arrive.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#6 MitziG

 
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Posted 09 May 2012 - 05:30 PM

Neither celiacs or tourettes is the worst thing to have. I am guessing if your husband was just dx that his is a mild case. There is a connection with gluten and Tourettes you know...

Having children is always a gamble- they could develop or be born with any number of illnesses, and those of us whose children lose that bet, love them all the same and would not undo bringing them into the world.

You would not wish yourself or your husband out of existence because you are less than healthy. Give your children the same opportunity to have a happy life, with or without ideal health.
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#7 dani nero

 
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Posted 11 May 2012 - 05:00 AM

It would be nice if his problem was caused by gluten. I did have thoughts that maybe he's also Gluten Intolerant since he has cramps and diarrhea around once or twice a month maybe.. I haven't counted. There is no way my husband would agree to going gluten free however. He was completely against it when I suggested he gets tested. It took a lot of mouth-yapping from my part to get him and my family to understand celiac.. and they don't want to accept it because they don't want to let go of their precious foods.
For sure he'll tell me that not everything has to do with gluten and think I'm over-doing it.
I told them I won't force it onto them and that I'm willing to help if one day they feel really sick. Nothing more I can do.
This is the suckiest part about celiac. People don't believe it if they don't see it.

The thing with having celiac is that although I'm happy that I know how to keep myself healthy now, I'm still not happy. Probably because I spent 70% of my life having depression and anxiety, but that will not have anything to do with my children (if I have them) since I'll make sure they get tested frequently.

I can't pinpoint the problem but it's mostly how hard I have to work on other people. Convincing them, explaining to them, and trying hard to be taken seriously. I don't wish this unhappiness on others, specifically my own kids.
I know I'm going to love my children even if they have a multitude of conditions, but I'm not a strong person.. How am I supposed to help them when they are depressed about being different.
  • 0
Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#8 dani nero

 
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Posted 11 May 2012 - 05:08 AM

Thank you for all the links by the way. I went through all of them.
  • 0
Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#9 mommida

 
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Posted 11 May 2012 - 06:00 AM

Neither celiacs or tourettes is the worst thing to have. I am guessing if your husband was just dx that his is a mild case. There is a connection with gluten and Tourettes you know...

Having children is always a gamble- they could develop or be born with any number of illnesses, and those of us whose children lose that bet, love them all the same and would not undo bringing them into the world.

You would not wish yourself or your husband out of existence because you are less than healthy. Give your children the same opportunity to have a happy life, with or without ideal health.

Well said! :D :D :D

Going gluten free can taste great! I'm not going to tell you that won't be some major flops from the kitchen, but naturally gluten free food does taste great. I have to tell you about birthday parties for my kids. Everyone shows up~for the food. Especially for the cake! (well I've started making about three cakes now!)

Think outside of the box. Mexican, Mediterian, Carribean, and Indian recipes that start out gluten free can be great places to start looking for new recipes and party theme.
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Michigan

#10 lovegrov

 
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Posted 11 May 2012 - 06:13 AM

I know a kid who has tourettes, although perhaps not the worst case in the world. He is on a tennis scholarship at college and is one of the more brilliant math students I've ever known personally.

richard
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#11 Stubborn red head

 
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Posted 11 May 2012 - 06:14 AM

Tourette's can be a awful thing, I'm glad to hear its not a bad form of it. I know a guy that has a constant humming, he cant help it and most of the time he doesn't know he is doing it. He has tourette's, doesn't take the meds for it, I think they gave him ativan(spelling?) or something to help calm him down but it just makes it worse, and he is a heavy drinker and they don't mix well. Did I mention the constant humming gets worse when he drinks too? He has a young daughter who has health issues but tourette's is not one of them. Her main health issue is her sinuses, She needs to have them removed or something he always I mean always has a runny nose, Sinus infection, pink eye, or anything else you can think of that would be in the eye and nose area. Her mother has a Stomach issues, Mood stabilizers, and a few other things. I don't think you have much to worry about with the tourette's. I know its possible it can be in the genes but I don't think its a dominant thing.
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#12 a1956chill

 
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Posted 11 May 2012 - 09:57 AM

The thing with having celiac is that although I'm happy that I know how to keep myself healthy now, I'm still not happy. Probably because I spent 70% of my life having depression and anxiety, but that will not have anything to do with my children (if I have them) since I'll make sure they get tested frequently.

I can't pinpoint the problem but it's mostly how hard I have to work on other people. Convincing them, explaining to them, and trying hard to be taken seriously. I don't wish this unhappiness on others, specifically my own kids.
I know I'm going to love my children even if they have a multitude of conditions, but I'm not a strong person.. How am I supposed to help them when they are depressed about being different.


Going gluten free resolved most of my depression and anxiety issues.
The anger from lost years is another story :ph34r:


You teach them that being different is a positive thing.

When you have children ,If they have issues with the diet I will introduce them to my 8 year old granddaughter who when gluten free by her choice when she was 7 years old.She is much happier and healthier now that she is gluten free .
  • 0

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#13 IrishHeart

 
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Posted 11 May 2012 - 10:34 AM

Going gluten free resolved most of my depression and anxiety issues.
The anger from lost years is another story :ph34r:




Same here. Gluten/celiac caused depression and anxiety. Being gluten free brought "me" back.

The anger over the lost years and all the physical pain and multiple miscarriages and other ramifications of celiac I still deal with?...well, I am working on that. :)

I look at it this way. Life's messy and we are often dealt some pretty horrible things that are "unfair" and we could spend the rest of our time saying "why me?" or we could say "screw the past! it's done " and move on.

If there is one thing I learned from being nearly dead and insane from illness and celiac, it is this:

Every day is a gift and there are no guarantees. Have children if you are able. They are a gift, no matter what package they come in. That's just my opinion, of course, but I wasn't that lucky so maybe I have a different perspective.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#14 Ninja

 
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Posted 11 May 2012 - 11:33 AM

Don't forget that genetics isn't everything. There are kids who are genetically predisposed to horrible illnesses, which they never develop... and others who "should" be healthy, but aren't. All you can do is do your best with what you've got. :)

~Laura
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Gluten Free 2/12 

 

Let the soul speak with the silent articulation of a face

~Rumi
 

 


#15 UKGail

 
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Posted 11 May 2012 - 11:33 AM

So sorry to hear about your husband's diagnosis. I understand how you feel about this but, like other posters, think that life is definitely worth living, even with either or both of these disabilities. You are both starting on your journey learning how to manage them, which will ensure that you will both eventually make fine parents to any children you may have. My family is riddled with celiac cases, discovered only relatively recently when we all successively hit middle age, despite some of us having symptoms since childhood or the teenage years. The challenge surely for the next generation is to take the knowledge of an inherited risk, and be alert for and manage any symptoms as soon as they appear (or even be healthily gluten free as a precaution). Think of the general good we can all do with this early knowledge, rather than not have children, and let out of date doctors continue to fail to help other hard to diagnose sufferers.

I don't know much about Tourette's, but if you accept the emerging medical thought that gluten sensitivity might be an autoimmune disorder of the central nervous system, a possible link is not at all surprising.

I have been doing a gluten challenge for the last 2 weeks prior to an endoscopy and colonoscopy next week (after having been gluten free for 6 months). As I am sero-negative this is the only way I might ever get a formal diagnosis of celiac, which I would prefer to have to help my children (and other relatives) manage their health. I can verify that anxiety and mild depression is part of the symptom picture and that 2 weeks of gluten is about all I can take. I am looking forward to returning to my "normal" gluten free diet next week, irrespective of the endoscopy results. I know you haven't been gluten free for very long, so you may well still feeling very up and down about anything and everything. So now is probably not a good time to make any final decisions about life. Hopefully you will feel happier soon and, with luck, your husband might, in time, come round to eating the same way you do and might feel better for it.

PS my husband says he also has Tourette's. But only when someone annoys him and he can't stop swearing under his breath! Seriously though, his family has depression and stomach and bowel cancer issues. Hardly classic celiac symptoms, but after having been gluten lite alongside my gluten free for 6 months, he is now getting stomach aches and headaches along with the gluten meals for my gluten challenge. Yet he won't hear my suggestion that he might possibly be gluten sensitive. I've had to drop the subject, but all our meals at home are going to be gluten free again very soon. If he wants to eat gluten at work, then that will be his choice.
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