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HannahBick

My husband is celiac. We have 10 kids. Is it likely that any of the kids have celiac disease?

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I second Beverage's comments, and wish you strength.

FWIW, my kid was heading toward being hospitalized for psych issues before someone finally thought to screen for celiac. Part of the reason I'm active on this forum is to help raise awareness, with the goal of saving other people from some of the pain our family went through over the decade between when issues first cropped up and when someone finally thought to order the blood test. 

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Thanks for your replies. One question though. Should I let them put my kids through an endoscopy? I'm happy for them to run the blood and gene tests but am very uneasy about the risks of them going through the biopsy procedure. It seems too invasive and traumatic just to get a diagnosis. Can't they just go gluten free from positive bloodwork? I know other parents who have done this because the antibody tests apparently have a very high positive predictive value. How does this work?

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Posted (edited)
7 minutes ago, HannahBick said:

Thanks for your replies. One question though. Should I let them put my kids through an endoscopy? I'm happy to do blood tests and genetic tests but am very uneasy about them going through the biopsy procedure. It seems too invasive and traumatic just to get a diagnosis. Can't I just put them gluten free based on positive blood tests? I know other people who have done this.

I think you are jumping way ahead of yourself.  Last I read, You haven't figured out how to get a Celiac blood test for the ones with Celiac symptoms.  Why not take those kids to a doctor and do the blood test?  Depending on how high the blood antibodies are, and the symptoms,  that might help the doctor to decide if the kid needs further testing.

Edited by kareng

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My son’s GI said his high antibody levels with a positive genetic test were sufficient for the formal celiac diagnosis without a biopsy. We went that route and were happy to be able to immediately go gluten free. We noticed such improvement so quickly. I think you need to get the blood test (full panel) and then go from there with genetic testing versus biopsy. I don’t know what a biopsy costs but the genetic testing was quite expensive. I’m so happy you are getting your kiddos tested!! I think you are making a very responsible choice and being a loving parent. I hope your husband can understand and get on board someday.

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5 hours ago, pschwab said:

My son’s GI said his high antibody levels with a positive genetic test were sufficient for the formal celiac diagnosis without a biopsy. We went that route and were happy to be able to immediately go gluten free. We noticed such improvement so quickly. I think you need to get the blood test (full panel) and then go from there with genetic testing versus biopsy. I don’t know what a biopsy costs but the genetic testing was quite expensive. I’m so happy you are getting your kiddos tested!! I think you are making a very responsible choice and being a loving parent. I hope your husband can understand and get on board someday.

I think there are going to be some tears, at least for a few of them. Most of them adore bread even though I don't believe it necessarily adores them back. One of the children had a bowel movement earlier today, forgot to flush the loo and it absolutely stank.

I think my husband has wanted to live his life through his children since he missed out on being able to eat normal breads, cakes and biscuits. Gluten hasn't even come close to destroying our childrens' health like it destroyed his own when he was very young. He always considers the children to be his friends.

I am a bit shocked to be honest as I believed him when he told me that celiac is normally inherited from the mother (caused by c-section, quality of breastmilk as well as genes, etc.) and not the father and that because he was gluten free at the time of conception he thought they were even less likely to have problems.

9 hours ago, kareng said:

I think you are jumping way ahead of yourself.  Last I read, You haven't figured out how to get a Celiac blood test for the ones with Celiac symptoms.  Why not take those kids to a doctor and do the blood test?  Depending on how high the blood antibodies are, and the symptoms,  that might help the doctor to decide if the kid needs further testing.

I just don't want any doctors short changing or (intentionally/unintentionally) fooling me in the process. I need to know what I am getting into and be very sure of myself.

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I have taken my children to a different doctor, who was recommended by a celiac friend of mine. 7 out of the 10 children have tested positive, and all of them are scheduled for an EGD at different times (since they all have signs/symptoms). I'm not surprised since they (and I) have all eaten a lot of unhealthy high-gluten food for so long, far more than most people, given that wonder bread is so inexpensive. My husband has been away for the last two weeks so he doesn't know what I've done. At least if they have a positive biopsy he and our PCP can't argue anymore! :P

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Wow! I am certainly glad that you have been able to get them all tested! You did the right thing.

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I’m so glad you persisted!

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It’s good that you checked.  I am sorry you had to sneak it past your hub.  But it is good to get them gluten-free so they can heal, grow, think and learn. I hope you have a plan for when he comes home and what you and the children will do/ go.  

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I am also glad, but I would definitely report your PCP.  As a medical doctor, he should be protecting the best interests of the children.  It is well known that celiac disease is genetic.  There is no excuse for it in my personal opinion.  

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On 13/05/2018 at 12:04 PM, cyclinglady said:

I am also glad, but I would definitely report your PCP. As a medical doctor, he should be protecting the best interests of the children. It is well known that celiac disease is genetic. There is no excuse for it in my personal opinion.  

I've been told that a lot of PCPs have this attitude about celiac. Ours hasn't even evaluated my husband's diet. We don't live near a university medical center so that doesn't help. At the moment I am using up the non-gluten-free items while I wait for all the kids to get scoped and treating them to Dunkin Donuts, Oreo cookies and Pizza. They are aware that their lifestyle will soon change (yes there have been tears, my daughters are very worried about their upcoming biopsies this week) so I've told them to enjoy the unrestricted diet while it lasts. They will now experience first-hand what it is like to not be able to eat the foods at social events and spontaneously go to other kids' homes for sleepovers. 

I have spent years trying to stick up for my husband and make him look good to other people. He will arrive home late next week, so hopefully all of the results from their EGD and biopsy will be in by then and I can show him proof from the GI specialist. I've decided that if the kids complain about the gluten-free diet being difficult, I'll remind them of how their father has had to follow the diet from an even younger age, and also point out the risks of having untreated celiac. Maybe that Oreo cookie won't look so appetising after all... :P

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14 minutes ago, HannahBick said:

I've been told that a lot of PCPs have this attitude about celiac. Ours hasn't even evaluated my husband's diet. We don't live near a university medical center so that doesn't help. At the moment I am using up the non-gluten-free items while I wait for all the kids to get scoped and treating them to Dunkin Donuts, Oreo cookies and Pizza. They are aware that their lifestyle will soon change (yes there have been tears, my daughters are very worried about their upcoming biopsies this week) so I've told them to enjoy the unrestricted diet while it lasts. They will now experience first-hand what it is like to not be able to eat the foods at social events and spontaneously go to other kids' homes for sleepovers. 

I have spent years trying to stick up for my husband and make him look good to other people. I've decided that if the kids complain about the gluten-free diet being difficult, I'll remind them of how their father has had to follow the diet from an even younger age.

Well I constantly update list of gluten free alternatives on a quarterly basis, more of treats but this list helps many find safe gluten free "cheats" that help with cravings. Have over a dozen updates to make next month and post new list but this is so far.
https://www.celiac.com/forums/topic/121148-gluten-free-food-alternative-list-2018-q2/

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Thank you all for your help and support over these past few weeks. The kids have had their EGD and the results are in. Only two of the 10 had a normal biopsy. They all have the DQ2 gene and I don't carry any of the celiac genes so it had to come from their father. The entire household (including myself, at least for a while) will be going gluten free.

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4 hours ago, HannahBick said:

Thank you all for your help and support over these past few weeks. The kids have had their EGD and the results are in. Only two of the 10 had a normal biopsy. They all have the DQ2 gene and I don't carry any of the celiac genes so it had to come from their father. The entire household (including myself, at least for a while) will be going gluten free.

How did your Husband take this news? Will he support them being gluten-free?

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Great you know what the situation is, and I'm so happy you are all going gluten free.  It really is the safest and best for the ones that have Celiacs.  You're an awesome mom!!!

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11 hours ago, kareng said:

How did your Husband take this news? Will he support them being gluten-free?

I will find out when he gets home tonight. :(

The gastroenterologist wrote a letter for each of them to certify that they have celiac disease and require a strict, lifelong gluten free diet so at least if my husband isn't happy he can go and argue with the GI specialist. :P

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10 minutes ago, HannahBick said:

I will find out when he gets home tonight. :(

The gastroenterologist wrote a letter for each of them to certify that they have celiac disease and require a strict, lifelong gluten free diet so at least if my husband isn't happy he can go and argue with the GI specialist. :P

Do you have someone who can be there with you?  A mother, friend, someone.  Maybe he would be less likely to blow up if someone else is there?

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On 26/05/2018 at 8:57 AM, kareng said:

Do you have someone who can be there with you?  A mother, friend, someone.  Maybe he would be less likely to blow up if someone else is there?

My good friend with celiac disease was there with me when he got home. He brought some regular non-gluten-free biscuits for the kids and even offered them to said friend before he remembered that she too can't have them. Go figure. I told my husband about the kids in front of her so I could have her support. He appeared calm at the time and for the rest of the evening but upon waking the next morning he had left, with no explanation or anything other than to leave a note on the table saying, "I think you know why I might not be at home this morning." 

He hasn't blown up but also hasn't said much. He's been rather cold since he has returned home. 

I spoke to a counselor about my husband before having the kids tested. From what I told her about all of this, she believed the only explanation was that he thrives on receiving pity.  When one of the kids recently mentioned that they felt sorry for my father (after he threatened suicide a few months ago) never being able to eat gluten, that was the final straw for me since it meant that she had no idea about the implications for her and her siblings. 

One question. Have you found gluten free food to really be a lot more expensive or do you think is an excuse?

I have been grocery shopping and have found that most naturally gluten free foods like potatoes, rice, beans, fruits and vegetables are priced very competitively. I haven't bought gluten free bread for them - the GI doc advised us to stay away from it for a while due to the texture difference - but got a few gluten-free cake and cookie mixes for the kids to bake together during the summer break. I'll also look at some of the recipes on here.

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Posted (edited)
1 hour ago, HannahBick said:

My good friend with celiac disease was there with me when he got home. He brought some regular non-gluten-free biscuits for the kids and even offered them to said friend before he remembered that she too can't have them. Go figure. I told my husband about the kids in front of her so I could have her support. He appeared calm at the time and for the rest of the evening but upon waking the next morning he had left, with no explanation or anything other than to leave a note on the table saying, "I think you know why I might not be at home this morning." 

He hasn't blown up but also hasn't said much. He's been rather cold since he has returned home. 

I spoke to a counselor about my husband before having the kids tested. From what I told her about all of this, she believed the only explanation was that he thrives on receiving pity.  When one of the kids recently mentioned that they felt sorry for my father (after he threatened suicide a few months ago) never being able to eat gluten, that was the final straw for me since it meant that she had no idea about the implications for her and her siblings. 

One question. Have you found gluten free food to really be a lot more expensive or do you think is an excuse?

I have been grocery shopping and have found that most naturally gluten free foods like potatoes, rice, beans, fruits and vegetables are priced very competitively. I haven't bought gluten free bread for them - the GI doc advised us to stay away from it for a while due to the texture difference - but got a few gluten-free cake and cookie mixes for the kids to bake together during the summer break. I'll also look at some of the recipes on here.

The stuff that cost some more is the gluten replacement product- cookies, bread waffles, etc.    

I am sorry your husband is being a baby about this.  Very sad he prefers his children to be sick.  It sounds like he has a lot of issues.  Please consult a good attorney - medical neglect is a good reason for him not to have any unsupervised visits.  

 

Maybe he he feels guilty that they got Celiac from him? Some therapy might help him

Edited by kareng

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Posted (edited)

If they can have peanuts, these cookies are easy and delicious. Gluten eaters love them.

1 cup peanut butter

1/2 cup brown sugae

1/2 cup white sugar

1 egg

1 teaspoon vanilla

 

stir well & add chocolate chips if you like.  Make them into balls and placenta on ungresaed baking sheet.  Flatten with a fork.  Bake at 350F for 8-10 minutes.  

Edited by kareng

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17 minutes ago, kareng said:

If they can have peanuts, these cookies are easy and delicious. Gluten eaters love them.

1 cup peanut butter

1/2 cup brown sugae

1/2 cup white sugar

1 egg

1 teaspoon vanilla

 

stir well & add chocolate chips if you like.  Make them into balls and placenta on ungresaed baking sheet.  Flatten with a fork.  Bake at 350F for 8-10 minutes.  

These are yummy.  We made theses when I was in middle school so long ago and decades before I even knew about celiac disease.  I do not flatten them.  I roll them into balls after coating them in sugar.  Easier to pop right into your mouth!  Besides, that was the way my Home Economic teacher taught us.  ?. I think it is called culinary now!  

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7 hours ago, HannahBick said:

My good friend with celiac disease was there with me when he got home. He brought some regular non-gluten-free biscuits for the kids and even offered them to said friend before he remembered that she too can't have them. Go figure. I told my husband about the kids in front of her so I could have her support. He appeared calm at the time and for the rest of the evening but upon waking the next morning he had left, with no explanation or anything other than to leave a note on the table saying, "I think you know why I might not be at home this morning." 

He hasn't blown up but also hasn't said much. He's been rather cold since he has returned home. 

I spoke to a counselor about my husband before having the kids tested. From what I told her about all of this, she believed the only explanation was that he thrives on receiving pity.  When one of the kids recently mentioned that they felt sorry for my father (after he threatened suicide a few months ago) never being able to eat gluten, that was the final straw for me since it meant that she had no idea about the implications for her and her siblings. 

One question. Have you found gluten free food to really be a lot more expensive or do you think is an excuse?

I have been grocery shopping and have found that most naturally gluten free foods like potatoes, rice, beans, fruits and vegetables are priced very competitively. I haven't bought gluten free bread for them - the GI doc advised us to stay away from it for a while due to the texture difference - but got a few gluten-free cake and cookie mixes for the kids to bake together during the summer break. I'll also look at some of the recipes on here.

I do recipe post sometimes on my blog here, a bit more specialized often
https://www.celiac.com/blogs/blog/1202-gluten-free-and-specialty-diet-recipes/
I also have a updated list of some gluten free products.
https://www.celiac.com/forums/topic/121802-gluten-free-food-alternative-list-2018-q3/

 

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I don't know what country you are in.  In the US, Crockpot/slow cookers are very inexpensive - under $50 for a really good and large one.  these recipes could probably be made on the stove with a little extra liquid.  She is gluten-free.

 

https://www.ayearofslowcooking.com/

 

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Here sis another cookie recipe that does not need expensive gluten-free flour and xantham gum - 

Flourless chocolate cookies
 
 
Mix 2 cups powdered sugar, 1/2 cup cocoa, 2 tsp. cornstarch, 1/4 tsp. salt, 2 egg whites (not beaten). 
Should be thick enough to form balls; if not, add more sugar. Should be sticky and form a imperfect ball. 
Stir in 1 cup nuts (unsalted
Or salted peanuts, pecans, or walnuts or chocolate/white chips or pieces of candy cane.) Form into 15 balls, place on parchment paper, and bake 16-19 minutes in a 300 oven until crackly and shiny. Cool completely. . They have a sort of crisp-meringue outside, and a soft, chewy inside, 
 
 
Also plain meringe cookies - with choco chips, peppermint in the "dough", candy canes, etc. 
 
 

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