Jump to content
  • Sign Up

Archived

This topic is now archived and is closed to further replies.

Guest andie

Do You Suspect Celiac In Your Child?

Recommended Posts

Guest andie

Sarah

I try very hard to make my son's life as 'normal' as it can be. I make him and his father 'special' deserts that the other kids just DIE for. My son gets to say it is his, but we all eat it. The kids come home now and want to know what I am cooking for Andrew! Ha! Ha! Little do they know that they are all gradually going gluten free and loving it. When at gatherings they see something gluten free and they dive right in! Some of it is gross, but then so is the 'normal' food. I tell them it just wasn't cooked right.

As far as the Pizza Hut thing, most restaurants are pretty accomodating. Have a birthday party there. Talk to the manager to see what's in the sauce. Ask if you have the regular party with the regular price, would they cook a special pizza in their oven? If you have a pizza pan, make the dough and shape it on the pan at home, have them put the sauce and items on, cook it in the big oven and the waitress serve it to him. I'm guessing with all the window dressings it will taste pretty much like the real thing!

Put a note in the suggestion box to add a gluten free dough to their menu. Or send an e-mail to the company. Tell them to do some research into the growing awareness and shear volume of celiac people. I bet their losing out on alot of business. How many celiacs have you heard of that eat at Pizza Hut?

I think I will do just that!

Just a thought.

andie

No, I totally agree. Hey, Celiac sucks- every once in awhile Lucas gets bummed about something he loved and can't have, like Italian bread or Pizza Hut pizza, and when he gets sad I want to bawl my eyes out... But I would MUCH rather him have something that can be controlled by diet, rather than something that requires medication for the rest of his life!

Share this post


Link to post
Share on other sites

I am thrilled you DS is doing better that is wonderful!

I do have to say though fruther testing after blood work is a very personal choice. We chose to do the scope with my DD and we are glad we did as hard as it was seeing her go through it to us it was worth it. Yes we were vERY lucky and it took us all of 3 weeks from the 1st blood test to the final results of the scope to know she was Celiac. So yes we are VERY lucky. Maybe if I had gone through what others have gone through I might feel different who knows?

Certainly don't beat your self up for the wait to try gluten-free. I understand my DS was on Zyrtec since he was 15 months and he was very slow at everything. So much so we were thinking of testing for a learning disability and the dr agreed. Then a chance conversation with some one I casualy knew prompted me to try a different allergy med and I I now have a different child! He is sharp as a tac, fast almost hyper and isn't sluggish any more. He is the child he shoudl ahve always been! So I wasted 4 yrs of my sond prime learning yrs having him in a fog. Sure I feel guilty but I am more thankful I caught it before he started kindergarten this yr.

Keep up the good work getting the word out there on gluten-free!

Share this post


Link to post
Share on other sites
Guest andie

Hi Nikki'smom

Thanx for your support. Your situation sounds familiar to mine.

I read/saw somewhere what to do with kids that have had a slow start and are now able to retain things longer.

Have paper and crayons/pencils on a table when not in use. Depending on the mood of the child/parent pick up a crayon and start to colour yourself. Make the grocery list with the paper and crayons. Let your child help. Always mention the colours and letters. ie 'Let's use the blue today.'

After awhile ask them 'What color should we use today.' , and get them to pick it out to use.

Talk while you write and spell. ie 'jam'.... 'j' - 'a' - 'm'. Ask them if they want to copy. The big thing is NO PRESSURE!! If they don't want to participate that's o.k. Let them color something else. You just keep talking and it's surprising what they pick up on and remember. Ever had one of your kids repeat something you said a week ago at a time when it is not convenient? Same idea.

Good luck.

Andie

I am thrilled you DS is doing better that is wonderful!

I do have to say though fruther testing after blood work is a very personal choice. We chose to do the scope with my DD and we are glad we did as hard as it was seeing her go through it to us it was worth it. Yes we were vERY lucky and it took us all of 3 weeks from the 1st blood test to the final results of the scope to know she was Celiac. So yes we are VERY lucky. Maybe if I had gone through what others have gone through I might feel different who knows?

Certainly don't beat your self up for the wait to try gluten-free. I understand my DS was on Zyrtec since he was 15 months and he was very slow at everything. So much so we were thinking of testing for a learning disability and the dr agreed. Then a chance conversation with some one I casualy knew prompted me to try a different allergy med and I I now have a different child! He is sharp as a tac, fast almost hyper and isn't sluggish any more. He is the child he shoudl ahve always been! So I wasted 4 yrs of my sond prime learning yrs having him in a fog. Sure I feel guilty but I am more thankful I caught it before he started kindergarten this yr.

Keep up the good work getting the word out there on gluten-free!

Share this post


Link to post
Share on other sites

Thanks Andie!

My DS is perfectly fine after going off Zyrtec. He turned 5 at the end of July and just started sounding out words the other day! a few months ago we couldn't figure out why he was 'off' and a simple change in meds and he is a totally different kid! It is amazing!

Share this post


Link to post
Share on other sites
Guest andie

Hi

Something bothersome happened today that I would like to share and get ideas.

If you have read this board then you know my sons story.

Yesterday while standing in the Tim Horton's line I stood with a well respected pediatrician whom I very much like.

We discussed my son and he was very open to the celiac disease thing, but given my son's symptoms and history, he said the first thing he would look for is Crohn's disease in the high end of the bowel.

After coming home and researching I discovered that yes indeed the signs and symptoms would all be the same with the same outcome.

So here is my question/theory/doubts...

Is it possible for him to have high end Crohn's which when treated with gluten free allowed the bowel to heal itself? And thereby making his blood work all round better because he is absorbing?

I am concerned about the pancreatic component. Especially since he tells me his stools are still pale brown/''green". I still do not wish to biopsy him. He is doing so much better. If he relapses I will consider it.

I intend to leave him on gluten free, but I also find it hard to believe that he has not been glutened in 6 months, which again makes me wonder.

Any thoughts?

Andie

Share this post


Link to post
Share on other sites
Just wondering what you did to get the dr to give a gene test??? I have taken my daughter to 5 different dr's and they flat out refused to give her the test!! ( I have the DQ2 gene, and DQ3 gene, and officially dx'd )

She is off gluten and has done so well, finally after 12 YEARS SHE finally slept through the night! She has Hasimoto's thryoiditis, but I know she is celiac as well.

Did you know that Celiac desease can trigger Hashimoto? I don't know if you've ever since this Webpage it;s called the Gluten-file! Look on the right hand side and read down, to what Celaic can cause. You'll find Autoimmune thyrouid desease right there, Hashimoto is a autoimmun desease of the Thyroid........

http://jccglutenfree.googlepages.com/

AS to the original Thread, I'm glad you wrote this! My Baby daughter did so much better after me putting her on a glutenfree diet (and myself since I'm stuill breastdfeeding), she' was on it for almost three weeks and she started sleepiong through the night when the Gastro said, I had to put her back on it for two months so we can adequately test her with a biopsy. We are on week three now and we both are woren down, getting up between 6-12 times a night because she's crying is nothing and my heart is aching for her, during the day she does good just very gassy. someone wrote her, why do the biopsy when the diet shows already whats up! I think this is what I nereded to read, it's hard for me since I'm a person who needs things written in black and white when it comes to diagnoses, maybe also to helop me stick with Glutenfree I don't know! I realized how egoistic this is of me, I want the diagnose written down and I'm willing to put her knowingly thorugh thisd torture! Not anymore though, you guys mnade me realize that. She's got all the symptoms exept for beeing back in growth and she has the genes DQ2 and DQ 8- what are the odds! Tomorrow, Nov. 1st we see the Gastro again, I will let him know that this has to stop and that I will put her back on Gluten free, thisd is not worth it! thank you guys for hleping me out here and making me realize some things! Can't wait to see though what the Malabsorptiontest from EnteroLab shows, either way, we'll go Glutenfree for her!

Share this post


Link to post
Share on other sites
Guest andie

BRAVO!!

In my opinion you are making the right decision. Especially since she has had the gene testing. I believe this, along with the diet trial, is all you need.

Your gastro Dr. probably won't agree. The Dr's are very black and white as well and he will try to talk you into it. He will say you are this far now, why not continue and know for sure. But will it be for sure and will you survive that long!

Patients need to impower themselves to a certain degree and you are advocating for your daughter. YOU know her better. YOU know what is working.

When she is old enough to understand what the procedure is all about and what is required for a biopsy, let her decide. Depending on the child that could be 8 or 18. When she eats gluten she will either continue or ask to stop.

If she does not get any better, then re-evaluate. It is an ongoing process. Nothing is final and you have every right to change your mind at any point.

Good luck!

Andie

Did you know that Celiac desease can trigger Hashimoto? I don't know if you've ever since this Webpage it;s called the Gluten-file! Look on the right hand side and read down, to what Celaic can cause. You'll find Autoimmune thyrouid desease right there, Hashimoto is a autoimmun desease of the Thyroid........

<a href="http://jccglutenfree.googlepages.com/" target="external nofollow">http://jccglutenfree.googlepages.com/</a>

AS to the original Thread, I'm glad you wrote this! My Baby daughter did so much better after me putting her on a glutenfree diet (and myself since I'm stuill breastdfeeding), she' was on it for almost three weeks and she started sleepiong through the night when the Gastro said, I had to put her back on it for two months so we can adequately test her with a biopsy. We are on week three now and we both are woren down, getting up between 6-12 times a night because she's crying is nothing and my heart is aching for her, during the day she does good just very gassy. someone wrote her, why do the biopsy when the diet shows already whats up! I think this is what I nereded to read, it's hard for me since I'm a person who needs things written in black and white when it comes to diagnoses, maybe also to helop me stick with Glutenfree I don't know! I realized how egoistic this is of me, I want the diagnose written down and I'm willing to put her knowingly thorugh thisd torture! Not anymore though, you guys mnade me realize that. She's got all the symptoms exept for beeing back in growth and she has the genes DQ2 and DQ 8- what are the odds! Tomorrow, Nov. 1st we see the Gastro again, I will let him know that this has to stop and that I will put her back on Gluten free, thisd is not worth it! thank you guys for hleping me out here and making me realize some things! Can't wait to see though what the Malabsorptiontest from EnteroLab shows, either way, we'll go Glutenfree for her!

Share this post


Link to post
Share on other sites
Guest andie

Hi

This is probably a stupid question, but how come my post didn't get pinned? I read the board message asking what a pinning was. I'm glad they posted it because I had no idea either. I see it has increased the screening process.

Is there somewhere where it specifically says what is not appropriate? If the screeners move it to a different category, is a message sent to the writer so they can find it?

I understand the advertising thing and messages that have explicit content, but some of the writers sound like they were asking legit questions but lost their messages.

Thanx

Andie

P.S. I like the way the board is set up. I have been on other boards that are very confusing! :ph34r:

Share this post


Link to post
Share on other sites

×
×
  • Create New...