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How Did You Know?


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8 replies to this topic

#1 anerissara

 
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Posted 07 February 2005 - 07:30 PM

I have just gone gluten-free after years of feeling crummy--bloating, pain, constant D and itchy rashes etc. etc. I'm not technically dx'd with celiac disease because my doctor didn't think I could have it since I've never lost 15 pounds for no reason :angry: But I'm pretty sure that's the problem because I have felt great since going gluten-free!

Anyway, I have 3 kids, 8, 5 and 2. The older 2 are both thin and prone to rashes, and occationally both kids will complain of tummy aches. My 5 yr old has always had strange tummy issues, she had what we finally figured out was probably reflux as a toddler and would throw up for no reason about once or twice a month after going to bed--no fever, no warning. She was tiny (still is) and weighed about only 16 lbs at a year old. She was put on reglan for the reflux, and then gained quite a bit of weight (went from not even on the growth chart to 15th %tile in 3 months!). The dr. didn't think much of it because she was otherwise very healthy and developing normally. She is still very thin and is somewhat short for her age, and also her skin is very pale--almost transclucent. My coloring is similar, but what worries me more is the dark circles under her eyes. Could this be celiac disease? She also has been grouchier than normal lately.
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"I will say of the Lord, 'He is my refuge and my fortress, my God, in whom I trust.'" -Psalm 91

gluten-free since January 26th, 2005
Feeling up and down, but better!

Mommy of a gluten-free 8 yr old, a 6 yr old who (much to her dismay) will be gluten-free soon and a 2 yr old who is so far symptom-free. Contemplating putting the whole family on the gluten-free diet since crumbs have become my nemisis!

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#2 MySuicidalTurtle

 
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Posted 07 February 2005 - 07:46 PM

Weight loss only happens to some people with Celiacs. Many are overweight or at perfect weights. You should be tested and your children, too. Celiacs can be passed down. My mother gave it to me and my brother.

Good luck!
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#3 celiac3270

 
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Posted 08 February 2005 - 04:34 AM

There's no set description, same as there isn't one type of adult celiac, but often the celiac child is very thin (from malnutrition) or on the shorter side. Of course, gastric symptoms can also lead you to the celiac.

Because celiac is also often passed on through genetics, I think it's very likely that she has celiac. Low weight, low height, unexplained vomiting--classic celiac symptoms....moody, circles under the eyes, pale complexion are just added things that would lead me to think celiac--I'd definitely get her tested.
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#4 KaitiUSA

 
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Posted 08 February 2005 - 06:53 AM

Celiac is a genetic autoimmune disorder. If you have it all of your kids should be tested. There is a chance that they do infact have it and the sooner they are tested the better. They would be very fortunate to find out young. From what you are saying there are signs of celiac and since you have it it makes me suspect it more.
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Kaiti
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Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#5 donnalois

 
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Posted 08 February 2005 - 10:59 AM

:D My five year old had very similiar symptoms as your daughter when she was 4 years old. My doctor sent me to a pediatrician who said my daughter (as well as celiac and casein intolerance) had an iron deficiency. She was low energy, cranky and poor apetite. She has been taking an iron supplement since then and went from the 10th percentile to the 40th percentile in size for her age. She was only 6 lbs 11 oz at birth so this is pretty good. Her appetite and mood have both improved since the added iron. Finding a gluten-free and C/F childs multivitan with iron was challenging but I found a great pharmacist who did a lot of legwork for me.

Donna
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#6 Boojca

 
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Posted 09 February 2005 - 07:03 AM

DEFINITELY have your children tested, it sounds classic to me. And I am the mother of a 3 year old diagnosed last June who's only symptom was "failure to thrive"....weight loss, rashes that could not be controlled, etc....

If it's not celiac disease no harm no foul, but if it is you can save them a lot of hardships. And if your doctor "doesn't believe in it" then tell him it's your money, your children, and you demand they be tested. And tell him you want the TTG test run, and that it must be sent to a very specific laboratory for accurate results (I believe promethius and Mayo are the only two in the country who do this test) And if they STILL give you a hard time go armed with this: http://www.naspghan....e_2004_jpgn.pdf it is the guidelines for diagnosing Celiac set forth by the The Celiac Disease Guideline Committee of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition.

Bridget
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#7 Deby

 
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Posted 11 February 2005 - 11:12 AM

If your children come out positive for celiac disease, then that only goes toward confirming your own diagnosis. I've never tested positive but both of my sons have celiac disease (they are identical twins, so it's not as alarming as it sounds statstically for offspring being positive. :-)

My 'oldest' twin complained of bone pain, was weak, pale, tired, no appetite, so thin it was distressing, but tall for his age. He tested positive on the antibody test at 3 1/2

My younger twin was MOODY! I was tempted to just turn around and leave him in the grocery store one time when he was having one of his almighty tantrums. He had elevated antibodies at 4 1/2 but didn't have a positive biopsy until he was 6. He cheats on his diet (as I knew he would, because of his temperment. :rolleyes: ) When he cheats he gets migrains. So I always know

Both boys threw up as babies and toddlers. I can remember holding one and having him throw up all down my night gown and just as I was setting him down, the other threw up all over the living room carpet. Both were grossly thin, I mean it was painful to look at them. But they did not test positive until the ages I indicated above. At that time they had gained some weight and didn't seem so fragile. They had stopped throwing up so much (but still did more that normal I think.) My older twin actually learned to throw up in a trashcan or sink at 2 1/2 It was just a matter of practical experience.

So to point to all this is, get your kids tested but if they don't come out positive, don't write off the possibility of celiac disease. Get them tested periodically just to be safe.
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Monica
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anti-body negative, self diagnosed, Gluten free since March 2001. Two sons (8) also have celiac. Antibody and biopsy positive. I love to cook and after much much experimentation can now get by pretty well!

#8 flowers

 
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Posted 11 February 2005 - 03:47 PM

I am still unsure about the knowing. I have a son who tested positive for celiac through a blood test, but the biopsy was negative. I was told that I should not go on a gluten free diet. His main symptom is behavioral. One main difference in his bahavior was when he was taken off milk. I am confused as to what is what and have read that there is such thing as gluten sensitivitiy without celiac. ANy thoughts? I am right now going with moderate diet, high in protein and veggies, and low on gluten and dairy products. Some days are better than others. My blood test was done at a Quest. DO we trust QUest? I welcome any thoughts on the matter.

Gretchen
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#9 KaitiUSA

 
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Posted 11 February 2005 - 04:07 PM

flowers-if the blood test was positive I would not rule out celiac disease. If there is not enough damage to the intestine a biopsy will not catch it. Many people don't even have symptoms with celiac. Celiac is very underdiagnosed.I would also find a doctor who is knowledgable in celiac in your area. If you go to the homepage of this site there is a link to doctors and you may be able to find them where you live.
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com




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