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lv2bmom23

New To Group....need Advice....

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This is our first posting on this site and we want to start by apologizing for the length but wanted to give a complete background in case someone can find something we are missing here. We have an 11 year old daughter who has downs syndrome and was diagnosed with Celiac disease last spring. Her initial test showed a tTG IGA number of over 250 but we were not given an exact number. We were referred to a GI specialist, had a biopsy done which showed positive for Celiac disease. We started her on a gluten free diet on April 1st. We noticed an improvement in her during the first 2 weeks. Her belly shrunk changing her shape and she seemed to talk more and became somewhat more attentive. Then things seemed to change. She became more quiet and withdrawn, stopped talking and started acting strange. Over the course of about 6 weeks or so she seemed to get worse. She was lethargic, acting spacey, would sometimes cry for no apparent reason (especially at the dinner table), wouldn

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I don't have specific answers but wanted to put the idea in your head if things don't improve.

Metals could be causing problems with her. Metals can also cause behavioral problems.

It seems a lot of things are hidden behind gluten. I don't know how long the withdrawal symptoms would be but 3 months seems like a long time. Have you tried dairy free? That can cause problems with a lot of new celiacs.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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It seems a lot of things are hidden behind gluten. I don't know how long the withdrawal symptoms would be but 3 months seems like a long time. Have you tried dairy free? That can cause problems with a lot of new celiacs.

First thing that popped into my head was casein (dairy protein). Check out these links on the gluten-free, casein-free diet.

http://en.wikipedia.org/wiki/Gluten-free%2C_casein-free_diet

http://www.gfcfdiet.com/

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In addition to what the others have mentioned make sure she is not getting cross contamination anywhere. She may suffer from neuro effects from gluten and we tend to be extremely sensitive to CC. Even small amounts will cause a return of depressive symptoms in my son and I. Make sure if you haven't already to check any and all meds and supplements she takes as well as shampoos and lotions. Is your whole house gluten-free? It can be hard but not impossible to avoid CC if others are consuming, especially if you bake with gluten flours. A certified gluten free sublingual B12 would also help if your not already using one. I also would ask to have that panel run again to confirm that drop and be sure there was not some kind of a typo.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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We are experiencing similar symptoms with my 12 year old son. The first two weeks gluten free were wonderful, he was more relaxed, not so disagreeable, seemed better able to focus. Now we're into week four~irritable, heart palpitations, fatigue, night sweats, insomnia. Last week I had him into the ER because of the night sweats and the palpitations. I spoke with his physician yesterday and he explained that we've made a major change to his diet, and that it will take time. My son is on vitamin supplements because of some significant deficiencies, but I have to give them to him early in the day, if I give them to him at dinner time, he's up until the wee hours.

Our entire family is now gluten free and we've all experienced some kind of withdrawal symptoms, my husband seems to be having the toughest time. My husband is complaining of fatigue, weakness, nausea and anxiety since going gluten free.

I know that we're doing the right thing~but right now, I feel like the cure is worse than the disease.

Jan

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i also would eliminate dairy, & SOY & I would give her a B12.

Are you giving her any bought gluten-free products like the bread, cookies, crackers, pasta etc.

If so, I would stop all that immediately & only give her whole foods, what we refeer as the basics, meat, veggies, fruit, & nuts... some cooked rice...

I would not give her potatoes for a bit (nightshade family) & sub in sweet potatoes, you can fry those also...

If she does okay or better on that then add in some corn products like White corn tortillas - heat those up to make a PB & J with bacon is nice...

If your house is not gluten-free, then be sure to not use wheat flour or cake mixes etc, that stuff poofs up & gets on everything & she could be breathing it in...

Make sure she is getting enough proteins & carbs each day. oh & if you want, post & tell us what she is eating each day - there might be something that we recognize as a problem maker.

Once you realize what huge effect food has on everyone it is easier to sort it out,

remember no one really needs dairy...

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I might guess that maybe she is gettting cross-contiminated somewhere as it feels really horrible and since she can't really tell you she feels ill, this would make her act unusual, cry, etc. If I didn't understand fully what was going on and that there is an end to the misery in sight once I've healed more, I'd probably be crying too. Also, I would suggest making sure that everyone at school knows of her diet and maybe just send food with her that is safe (fresh fruits, veggies, chicken, etc). I work with special needs kids in schools and have been told be case managers weeks into the school year, that oh yeah, she has Celiac or dietary restrictions or whatever the case may be. I didn't know alot about Celiac until I recently was diagnosed and didn't really understsand how terrible it can make you feel. And I definitely used snack rewards with kids (goldfish crackers, licorice, etc) in the past, of course not the kids I knew had issues once I knew. I won't be using anything with gluten anymore and will check from day 1 on all allergies but it does get missed.

And it takes time to get back to normal, from what I'm reading from others. I'm several months in and would say that I'm 90% back to normal but still have some worse days and am more run-down than I was before Celiac. Hope she keeps getting better and better. Good luck.


Liz

Dianosed "possible Celiac" May '07 per biopsy with blunted villi

Bloodwork negative

Gluten-Free since June '07

Do NOT have Celiac genes per GI doctor

2 kids, 3 y.o. girl and 19 month old boy

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