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sugarsue

Member Since 10 Sep 2008
Offline Last Active Feb 04 2014 03:36 AM
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Topics I've Started

Neurological Symptoms

19 July 2010 - 05:39 PM

For those with neurological symptoms from gluten, how long does it take for them to subside after being glutened? How long did it take to feel better after going gluten free?

My 8 yr old daughter is suffering (and in turn me too). I don't know for sure it's the gluten since she has another medical condition too. But I am desperate for information to try to help her. She's been gluten free for 1 1/2 years but I could be better regarding the cross contamination or hidden gluten. I know she's been glutened recently several times from my stupidity.

Susan

Does This Sound Familiar

19 July 2010 - 05:24 PM

Does this behavior sound familiar to anyone? My 8 yr old dd is diagnosed gluten intolerant but she also is diagnosed with PANDAS (neurological reactions to strep infection). The PANDAS causes OCD and other intense behavior problems. She is undergoing some treatment for that and that, along with the gluten free diet have been what we have been doing to try to help her.

This can happen any time during the day but it is much worse at night. She will become worried that I am mad at her. Anything can trigger it. Then she will whine, plead, beg, cry "are you mad? don't be mad? you're mad right? Mommy, Mommy, Mommy, please, don't be mad" etc... and she won't stop. Nothing I do can get her to stop.

I am a mess from this. I can't even begin to explain how horrible it is to experience. I can't breathe, I need to get away, but she follows me everywhere with this. The more I try to get away, the worse she gets. She just won't stop. If I react, that's proof to her that I really am mad. If I don't react, she does not believe me that I'm really not mad.

I have been assuming all of her behavior issues are related to the PANDAS but recently I am wondering if this one is hidden gluten. I have allowed her to eat oats and other items that could have cross contamination, have not always checked her sauces at restaurants, etc. since she never had the gut reaction and is not diagnosed celiac. But recently she has had an obvious reaction to gluten that has made me wonder.

Of course I plan on tightening up her diet right away and see if it helps. I just thought I would come and post to see if this sounds like anything that anyone else experiences. I truly do not know how to handle this. My inability to help her, reason with her or just plain force her to stop is pushing me to the limit and I feel like I am going to lose my mind.

Susan

Celiac And Seizures

16 July 2010 - 05:09 PM

My 7 yr old dd has seizures that we believe are caused by gluten. She's been gluten free for over a year and has not had a seizure since.

I used to know within 10 minutes whether she had gluten (very bad BM's) but now things have changed and I can't tell any more. So I got a little lax on checking every ingredient. So she had a seizure this week. I have tracked back and I know where she got some good doses of gluten.

So of course I am getting the diet back under tight wraps. But this has me thinking. We don't have a celiac diagnosis but we do have a gluten intolerant diagnosis since the tests have been inconclusive. Does anyone know if seizures caused by gluten implies celiac? Or can non-celiac gluten intolerance cause seizures too. I think it is just splitting hairs since if gluten is causing her seizures, she can't eat any gluten.

Thanks.

Susan

Ate Tg Dish That Had Cream Of Soups....

27 November 2009 - 03:59 AM

Yesterday at thanksgiving dinner, we ate a dish that had undisclosed cream of chicken and (I think) cream of mushroom soup. I assume it was campbells but I don't know. None of us got sick :o

My girls are both seriously gluten intolerant (possible celiac but we don't know) and I am allergic to wheat. If I eat any small amount of wheat, my armpits wake me up in the middle of the night with the most intolerable itch. My 7 yr old gets diarrhea within 10 minutes after eating gluten. But she has not been sick for a while now. This has me completely confused.

Do you know of a brand of cream soups that don't have gluten? Is it possible to be gluten intolerant and "get better" if they don't have celiac? My girls have been gluten free for 1 year and it has changed our lives. I have no intention of adding back gluten but this really has me confused.

Susan

Bumps Are Back What Do You Think?

10 November 2009 - 06:32 PM

A little over a year ago, my then 7 yr old daughter was covered with molluscum and eczema and what I always suspected was DH but it was never confirmed and I really didn't know. In December 2008 she went gluten free and all of her skin issues resolved completely.

I know we have had accidental glutening over the past year witgh sauces at restaurants or other things that had less obvious gluten but her skin never broke out again. I put DH out of my mind. But, 2 days ago, all of a sudden, she has 7 bumps that look like the beginning of what she had before (5 on the fronts of her thighs, one behind her knee and one on her shoulder). They are red and look like large pimples starting up again and very itchy but the itchy comes and goes. She is terrified of a skin biopsy and I'm not sure I'd be able to get her to the appt if she knew that was happening.

I'm not sure if you will be able to tell from this picture. They are more red in real life. Could this be DH? I really don't want to subject her to the biopsy. If we are gluten free anyway, is it worth it to find out? Right now we are just putting her eczema steriod cream on them which is helping with the itching.

http://images1f.snap.....6:93338nu0mrj

She has low normal IgA and elevated Anti Gladian IgG and has not been diagnosed with Celiac. However, she can tell that she needs to stay away from gluten for her skin and her behavior and anger issues so she will probably never go back to gluten.

Thanks for looking and letting me know your thoughts.

Susan