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More Lost Then Ever


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6 replies to this topic

#1 raegansmom

 
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Posted 15 November 2007 - 05:56 AM

I read this and sometimes wonder if I am losing my mind. My daughters both were thought to have some sort of intolerance to gluten so after not much thought we took them off. Our world was different my wonderful girls could focus and had more normal BM's and were just happier more well adjusted kids.They were finally eating normal meals. We have had testing done( a childhood alergy panel) and they said not only does my girls blood not show any allergy to wheat but they seem extra healthy. Only slight milk alergy. We desided to let my older daughter have some gluten ( she had chicken nuggets and a half a hotdog bun) The impact mainly on her behavior was almost scary. She was a different child. Everyone noticed and were concerned. We took her back off of course and will continue the diet. My main question is do you lie and say it is a true allergy or continually just have people think you are one of "those Moms". This is such a cofusing thing but I know it is making our life that much better. I don't understand enough myself to explain it to people. What scares me is that my youngest daughters symtoms seemed to be explained with this diagnosis and now I wonder if there is something else wrong. She was scheduled to go back to the GI doctor but I am not sure if it is even nessesary. They keep saying she should be fine but something isn't adding up. Can they just have gluten intoleance and not full celiac? I read about false negatives and wonder if that is a part of it? They are both very young (16 months and 2 1/2) I just want to do what is best for my girls. Thanks for any insight.
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#2 JennyC

 
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Posted 15 November 2007 - 06:36 AM

First of all, celiac disease is not an allergy, it is an autoimmune disorder. My son tested positive for tTG (which indicates celiac disease), but tested negative for a wheat allergy. Your daughters are very young. Testing for celiac disease is not reliable until they are AT LEAST 24 months old. If you want an official diagnosis, if they are old enough, you would need to put them on a heavy gluten diet for at least one month prior to the blood work and biopsy. However, you don't need anyone's permission to but your children on the gluten free diet. You should do whatever is best for you and your children.
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Jenny

Son 6 yrs old, Positive blood work, Outstanding dietary response, no biopsy.
Household mostly gluten free since 3/07

Me: HLA-DQ 02 & 0302 (DQ 08), which I ran & analyzed myself!Currently gluten lite, negative tTG, asymptomatic

#3 dandelionmom

 
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Posted 15 November 2007 - 06:39 AM

Celiac is not the same thing as an allergy. Julia came back with a ridiculously high positive on the celiac panel but is not allergic to anything.

Keep them off gluten. A positive dietary response is the best proof out there. You know how to make your girls better, you're their mom!
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#4 EBsMom

 
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Posted 15 November 2007 - 06:40 AM

First of all, celiac testing in kids this young is notoriously unreliable. Secondly, allergy testing is not the same as testing for celiac disease. If I'm not mistaken, you can have celiac disease, but NOT have a wheat allergy. It's a completely different mechanism of reaction in they body.

It seems, from what you wrote, that your dd's clearly have a gluten intolerance. That could be full-blown celiac disease, with total villous atrophy, or it could be damage to a lesser degree, but it doesn't really matter, IMHO, because you see very plainly that your dd's are better off of gluten. I don't think it matters what you call it, when speaking to others. I pick my words based on who I'm talking to - sometimes I say celiac disease, sometimes I say gluten intolerant, and if I'm in a restaurant, talking to someone who doesn't quite seem to "get it", I say "severe wheat allergy."

My dd was first diagnosed through dietary response, then secondly by the Enterolab fecal test. She doesn't have a formal celiac disease diagnosis, but she had all the symptoms, and was getting sicker by the day. That all cleared up with a gluten-free (and cf/sf) diet. In my mind, and in her pediatrician's mind, that qualified as "probably celiac disease." So I feel justified in using that term, when I feel the need.

My ds, on the other hand, never had any intestinal-type symptoms. His symptoms were neurological. I usually refer to him as "gluten intolerant", but would not hesitate to use the term celiac disease (or "allergic to wheat") if I thought it was prudent.

In the end, regardless of what others think - others being doctors, your family, your friends - the only thing that *really* matters is your dd's response to a gluten-free diet. I think you should say *whatever* you need to say to make things easier for yourself and your dd's.

Rhonda
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#5 crittermom

 
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Posted 15 November 2007 - 07:41 PM

Katharine was tested for allergies to find her peanut allergy and sweet pea allergy. Those are the only foods that came up positive on the test, she was negative for wheat. When her tTg was done she was off the charts. Later we had the allergy panel done again to recheck the peanut thing and she still showed negative for a wheat allergy. They can definitely have Celiac and not an allergy. Hold strong and do what you know to be right for your kids. I have had to argue with many about many health issues involving my little ones, however when the cards were shown and the results came in.. I have been spot on EVERY time! Good luck.
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Melissa
Diagnosed Fibromyalgia March 2007
Mom to Katharine, 5 years old diagnosed Celiac Disease Sept 2006
Peanut allergy
Michael 3 years old diagnosed infant reflux at 6 weeks
Dairy Soy allergy until 22 months
Neg blood tests and biopsy Feb 2008
Positive gluten-free dietary response

[size=2]You may have to fight a battle more than once to win it.
Margaret Thatcher

Fall down seven times stand up eight.

"I've decided that after air, water, and dirt, the next most common substance on the planet must be gluten!"
Toni Nolte, Overland Park, Kansas

#6 ShayBraMom

 
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Posted 16 November 2007 - 06:47 AM

I'm givnign you my favourite Link too I jsut gave somebody else, it explaines in here as well aobut Non-Celiac-Gluten-Sensitivity, I think it also mentions somewher ein there that there are poeple out that, sensitive to wheat and what not but do never have allevated levels of antibodys- that's how a lot of people of originally had only the bloodtest done adn where negatieve still turned up positive with a biopsy ect.! It is possible to not havr allevated leves of Antibodies in the body and still be sensitive! The Diet, Result profed to you what was wrong! Besides, it's lilke a sprained ankle and a broken leg, did you know that it can take longer and hurts much miore to have a sprained leg then a broken one? the same thing with the Sensitivity! An Allergy is when get a reacrtion withini minutes of ingesting, anything from stomachpains, to hyves, to swellijng, to rashes ect. , everything esle falls under the category sensitivity, the onset of Symptoms can be delayed even for days sometimes (which makes it hard often to pinpoint). In this case just like with the example of the broken leg and the sprained one, a sensitivity is often a lot owrse then the true Allergy, because the onset with Allergy is quick and can go very quick with Medication, with the Sensitivity it can take days to onset but the symptoms even weeks to clear up and there is no Medication out there that helps with that!

Do you lie when you say they can't have wheat because it m akes them sick, no! If your Ped. won't write you a note for school that they can't have wheat under any circumstances, go to a different Ped. Explain how sick your grils get and yes if htye only have behavioural issues when they get glutenend then you will have to tell a little white liye and say also that they start vomiting and get runny stools for days and stomach cramps ect.- maybe he'll write you a note for school then! I'll have the same issue when my baby-dd gets older, I was supposed to put her back on Gluten for 2 month before they where gonna do the biopsie, I alsted 3 weeks, I couldn't see her suffering anymore and we both where so tired due to her extreme night-issues when she's on gluten, at one point I was so excausted that I put my shoes in the fridge! That was my drawline! I'll have to take it one day at a time and face things as they come up oinoce she goes to school!

http://jccglutenfree.googlepages.com/
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Susi with Shayden and Brandy
Shayden, pos. with DQ 2, pos. for Glutensensitivity with Tissuetransglutaminase Stool TgA 45 Units
Brandy, pos. with DQ2 + DQ8, DX Celiac Nov.07, gluten-free since Nov. 1st 07, Tissuetransglutaminase Stool TgA 63 Units
Me: Gastroscopy negative f. Celiac, IBS, Oesophagitis, Hiatus-Hernia

#7 raegansmom

 
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Posted 16 November 2007 - 07:53 AM

Thank you all for all your help and insight. I sometimes start to doubt myself but just as most of you have always been right to trust my instinct. I didn't know that you could be celiac without a positive wheat allergy. I will continue to do what is right for our girls and appeciate this site and all I am learning from it! Thanks again to all who responded!
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