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Something Is Not Quite Right.

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I need to start over. My daughter was diagnosed over 3 years ago she is now 6. She if off gluten, dairy and most fruit. She has been doing pretty well on the diet, she sneaks once in a while but I'd say about 95% of the time she's gluten free. Her last blood results were good. Buutttt I can tell she's still not 100%. She's having slight symptoms and it is bothering me. She grew 3 1/2 inches since her last yearly well check but she's still very very short. My other kids are short, but not nearly as short as she is. Her growth hormone was tested in Oct, it came back slightly below avg, I just want to know that she's healthy. Hurts me inside....

Ok now for my questions...

1. Are there any foods that you know of that seem or were advertised as gluten free that aren't? I know the list is huge... She eats mostly the same foods over and over.

2. Pediatrician said it's overkill when I mentioned I wanted to buy her a set of cookware /cutlery July for her to be on the safe side. Is there a need? Am I just paranoid?

3. When it says may contain/ made in the same factory as wheat, I always stayed away from it. Is there really a need to?

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I wouldn't worry about gluten-free foods having gluten or new silverware until she is 100% gluten free. If she is sneaking gluten 5% of the time, that is what I would eliminate.


 

 

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I wouldn't worry about gluten-free foods having gluten or new silverware until she is 100% gluten free. If she is sneaking gluten 5% of the time, that is what I would eliminate.

My thought too. No point worrying about CC until you have eliminated gluten from direct sources.

Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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I agree...she needs to stop intentionally eating gluten.  Can we help?  Where is she sneaking gluten....home, school, friend's homes?


-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)

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I agree. You need to get rid of her opportunities to sneak gluten even if it means a gluten-free household.

As for her growth, growth hormone s a very poor test to see whether her hormones are slow. GH is released in spurts so depending on when a person is tested, results could be very high, low or normal. A much better test is the insulin like growth factor 1 (IGF-1). The IGF-1 basically shows the average growth hormone released over the last month... IGF-1 is the test you want.

Best wishes.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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Let me clarify a little (sorry), She really is gluten free. She is very good about the diet. Once in a while she'll either get Glutened by mistake (she doesn't know how to read yet, but I really am very on top of her). In school she has a health para who checks everything and is in contact with me throughout the day. I make her leave the room during baking activities just in case. If she sneaks (was more when she was younger) I know about it right away she can't hide it. (she loses her voice right away)

I keep a log of how she feels, she has been great for the last 6 mts, yet something is still "off"

She hasn't been intentionally Glutened in months, I don't even think by accident. I know how she feels when she is completely gluten free. Shes a totally different person.

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As time gluten-free increases many of us become more sensitive to minute amounts of gluten or develop intolerance to different foods.  Since you have already removed dairy I would start by making sure this is not an issue of CC within your home.  Perhaps have the entire family eat gluten-free within the home for at least three months?  Gluten eaters would still be able to eat gluten outside of the home and it may help everyone in the family understand some of the pitfalls that could impact your daughter's health.  Additionally, if the whole family is gluten-free your daughter may feel more included rather than excluded when there are foods she is not allowed to eat in the home.

 

When she improves you could then decide how much gluten is safe to keep in your home or if it is prudent to remain completely gluten-free...especially until she is older and better able to keep herself safe.

 

Keeping the food/symptom log is a good place to weed out other possible intolerance...so keep it up!

 

Good luck to you and your family :)


-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)

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You may want to review school again as well. We do not allow gluten based baking activities to occur in our children's classrooms. Flour in particular is very contaminating to a space. We do not allow any gluten in their classrooms, but our kids are very sensitive. You may want to also survey art supplies and toiletry products(these at home too) as well. That being said, my daughter has another celiac in her class that can participate in gluten baking activities without apparent issue (this was done on an excursion, not in classroom,). Is she using play doh at school? Our kids cannot use it unless it is gluten free.

I agree with suggestions to give a gluten free home a trial. And toasters, strainers, cutting boards and slotted spoons in particular should be dedicated, always gluten free in a shared space.


My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

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If she's off dairy, is she drinking a milk substitute? My daughter is very sensitive and definitely reacts to Rice Dream. I know it's tested to below 5ppm, but barley enzymes are used in processing, and my daughter has a clear reaction to it. It was way more painful for her to give up Rice Dream than to give up gluten, as she'd always had a problem with dairy so she never drank cow's milk and was weaned onto fortified plain Rice Dream when she turned one. She absolutely loved it and drank three or four cups a day. It was her comfort food. Anyhow, we made our entire home gluten free and replaced our cookware immediately after her diagnosis, and I had no idea that Rice Dream was made with barley. It soon became clear that that was the only remaining thing she was reacting to. When I researched it and found out about the barley enzymes, we stopped the Rice Dream cold turkey, which was pretty upsetting for her and in retrospect probably not the best way to handle it. But her gluten reactions disappeared right away (well, until we tried a product made on shared equipment with wheat - lesson learned there too!).

Whatever the culprit is, I hope you're able to figure it out soon. I know what you mean about the difference between mostly-better and feeling-wonderful. There can be quite a big gulf in behavior between the two!


Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosed by GI with "presumed celiac" based on health history, celiac in family, and resolution of fat malabsorption and many other symptoms on gluten-free diet. Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Negative celiac tests after 15 years gluten-light and then a brief but awful gluten challenge. 

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Thank you for all your replies! She drinks silk soy milk. Do you guys trust cereals like fruity pebbles that claim to be gluten free?

I am going to try and keep my house as gluten free as possible we are a large family so it's a bit hard to go completely gluten free all the time. Though I do try and cook lots of naturally gluten free foods (chicken and rice etc)

I also spoke to the health para and told her to be aware during snack time and not let her share snack with anyone even if it's gluten free, since all these snacks pass from hand to hand. (gross)

I will keep up her log and perhaps add in new foods I introduce to Her. Gosh this is a full time job!

Thank you again for all your input!

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I do trust the gluten-free cereals - my kids will eat gluten-free rice krispies and all of the gluten-free chex flavors.  We haven't tried Fruity Pebbles, but I imagine that my three kids would polish off a box in one sitting...

 

My house is 100% gluten-free (minus beer and my husband's shaving cream) and I do NOT allow foods processed in a factory with wheat.  I'm sure it's overkill because that is a voluntary statement and there are probably a ton of factories that do joint processing, but don't label as such.  I mostly try to get the certified gluten-free foods, but that's not always the case.


Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (9 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (5 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.

Kid 3 (3 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 

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