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dani nero

It's Unfair

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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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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.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets4_Genetic.pdf

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets8_FactsFigures.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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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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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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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-support.org/2012/02/18/gluten-intolerance-and-tourettes-syndrome/

http://whattofeedyourkids.blogspot.com/2009/04/tourettes-syndrome-treatment-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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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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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.

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Thank you for all the links by the way. I went through all of them.

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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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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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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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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 .

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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.

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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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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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Honestly, if celiac and tourettes are the worst genetic disorders that you could pass to your future children then you should consider yourself lucky. Neither is a certain death sentence unlike cri du chat or tay-sachs both genetically linked disorders that generally result in death in infancy. Celiac and tourettes can be managed and since you know that there is a possibility that your future children may develop celiac or tourettes you can be vigilant in watching for symptoms.

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There will be medical advancements that cure or control disorders. Genetics is just somewhat of an educated guess for outcomes.

My sister was 1 out of five children born with a hole in her heart. Patent ductis. It is one of the last developments for an infant and this hole usually closes. Hers didn't. She was the 4th child to have open heart surgery in the early 70's from the Detroit area. It was rather gruesome. The surgical entry was through the back and scars remain on her shoulder blade. (They weren't sure if cutting through the chest bone would ever heal, so the decision was made to go through the back.)

This same condition (olden days it was called "blue baby") is now mainly cured with an injection of medication at birth. :D

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You can't worry about the what ifs in life. Everything is a mystery. That's part of the fun. If you want children I agree with the above posts there are much worse conditions. As a nurse I've seen the worst of the worst. And these two aren't bad. If your doctor thinks you can have children and you want to then I would say go for it and enjoy your babies. It will all work out.

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Girlfriend....you are the same one with advice for me when I was sad my 11 year was feeling left out and different. Don't tell me you aren't strong. You said you didn't get our weird attachment to food. Just remember that when you have kids. HA HA! I am married to a type 1 diabetic. We had 2 kids with celiac genes. We have been tested and neither of us have celiac. But gene testing shows we both carry it. 30% of the population carries it. My 11 year does have it but no symptoms. My 9 year old will be rested in 2 months. My 11 year old also has the diabetic genes so we are holding our breath. Saying that....I'd do it all over in a heartbeat. I have a friend whose 4 yr old had leukemia and took chemo for 3 years. She would have given anything to fix him with a diet. But saying that....it is still hard. It is hard when your child gets a cold and call the nurse line with the dumbest questions. You will cry when they give him/her shots. You will search her little newborn face and wonder if those tiny Spock ears will go down? (Yes, I did that with #2) And then if she is diagnosed with celiac you will go through denial like me and wonder if it is really that big of a deal if she doesn't hurt just so she can be normal. You'll search webmd when a mole looks strange and decide she really has elephant man's disease instead. (true story....funny now but true) Lesson: stay off WebMd. I have to deal with my dh and his insulin and my daughter with her gluten. But this weekend, we were all screaming and riding rollercoasters and happy as a lark. We all have our crosses to bear and some just get to eat bread and sugar while doing it. We don't. Kids are amazing...Spock ears and all.

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But this weekend, we were all screaming and riding rollercoasters and happy as a lark. We all have our crosses to bear and some just get to eat bread and sugar while doing it. We don't. Kids are amazing...Spock ears and all.

:) Fantastic!

This beautiful girl just hit it out of the park. :) This is what I was trying so hard to say. Kids come in "all packages" but they are gorgeous anyway! I would have given anything to have had one, no matter what "special attributes" she had.

Life is to be LIVED, no matter what we are dealt...and life is one big giant rollercoaster, so enjoy the ride!

DANI, You're stronger than you think you are. We all are.

Otherwise, we wouldn't be here, talking with each other.

You are just feeling anxious and down and overwhelmed right now.

Gluten does that to us. You do not think straight when your body is unwell from gluten or malnutrition. Trust me on this one.

Give yourself some more time to heal.

Take care, sweetie.

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Thank you for all your replies. I found them wise and insightful. Perhaps one must have a child, or be unable to have one, in order to be able to know what life is like without them? I never meant that I would want them or love them any less though, just that I didn't wish any of what I am going through on them (because we live in a world where we have to work so hard to make others understand as well as keep ourselves safe from contamination), and then add tourettes to the mix. I really have no trouble with a gluten-free diet, but I do have a problem with working too hard to be taken seriously.

I completely understand and agree with the possibility that my glutened-mindset is playing a big part in how I am feeling right now. Thanks so much for pointing that out and for being here for me. No more thinking about this until I'm sure I'm not under the influence of anything :-)

You're very special people.

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I was diagnosed with mild Tourette's syndrome a few years ago (a year or two after self-diagnosing it). When I went gluten free I had half a hope my tics might get better, then I heard there's no connection. Ah well, I live in hope!

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    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

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