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Post by PaigesMom on Jun 25, 2004 19:01:05 GMT -5
Paige had her 4 year well visit a week ago. Even though it is in the DS health guidelines to do a Celiac panel (IgA) at age 3, due to other issues, we waited until she was 4. (GI issues, neutropenia, sleep apnea and getting a T&A, ear tubes, etc.)
Guess what? We got the results today, and it's positive on both blood tests - the counts were over 100. According to the dr. anything over 30 is considered positive. She said if all of the bloodwork (both tests) was positive, the chances of her "really" having it are pretty good as opposed to having one test come back positive and one negative. She said we'd have to have a biopsy soon and after the biopsy she'd have to go on a gluten free diet.
Has anyone else had both blood panels come back positive and have a negative biopsy?
Does anyone's child have Celiac's? If so, is it really a total nightmare for a gluten free diet?
Anyone have any info they can share?
Thanks, Debbie
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Post by cmedrano99 on Jun 25, 2004 20:00:10 GMT -5
HI, I normal lurk but this topic caught my attention to speak up.
My name is Cynthia... my daughter 10yr was tested for Celiac through blood work.. and was postive.. had the biospy and it was negative. We redid the blood test 6months later and it was negative. Really Crazy and the dr not sure what or why or HOW it even happened!
So I would go based on the biospy before jumping the guns. I do wish you luck and hope for a good outcome.
Cynthia mama to Courtney10yr,Dayton 6yr and Joshua 2yr
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Post by MaggiesMom on Jun 26, 2004 0:33:08 GMT -5
Aren't there usually other factors that point to Celiac's? Like poor weight gain, trouble digesting food, etc.?
I really don't know much about it, but it seems like there are usually other underlying conditions that go with it.
Hope everything turns out well for you all.
Robin M - Maggie's mom
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Post by PaigesMom on Jun 26, 2004 8:32:14 GMT -5
Thanks for your responses. Apparently there are 2 blood tests that are performed in the panel and both of hers are positive. I know alot of kids that have come back one positive and one negative and then a negative biopsy and if hers was like that I probably wouldn't be giving it "to much" thought at this time. Robin M. - It is definately true that there are other symptoms of Celiac's some of the time, but you can be totally asymptomatic until it does alot of damage. Other symptoms are poor growth and weight gain (which she does not have), but unexplained food allergy, a supposed "lactose/soy intolerance", other auto immune issues (such as diabetes or neutropenia), diarrea or constipation, vomiting, stuff like that. The interesting thing is this - since birth Paige suffers SEVERE constipation whereas she takes mega doses of laxative(S) daily and still needs a "clean out" every two weeks, she's been tested for Hirschprungs twice, both biopsy's negative, she is totally milk and soy intolerant, red dye/blue dye intolerant (can not drink anything but apple/peach/pear juice, no snacks with color, etc.), makes her violently ill throwing up, and she's been neutropenic since she's been 6 months old for which she sees hematology. NOW, I have always been told these things are separate issues, all relating to either DS or just unexplained or she will "grow out of it". After hearing what the dr.'s said on Friday, I wonder if she's been Celiacs the whole time and these are not separate symptoms and they just didn't think of it. It's just a thought I'll ponder until the biopsy, which we will definately have soon. I really hope they are separate symptoms, and not Celiacs (glad that an "answer" would be found, but BLAH on the gluten free diet), I've heard it is a total nightmare since everything has gluten, corn, wheat, barley, oats in it in some form or another. Uggh, wish us luck!!!
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Post by Ashlea on Jun 26, 2004 11:51:41 GMT -5
Hi Debbie -
My son Chandler (age 5 almost 6) has Celiac. He was diagnosed when he was 3. The blood tests did come back positive and they of course so did they biopsy. Chandler had very few of the classic symptoms. But he was lactose intolerant and had very poor weight gain. And yes, at first the diet is a nightmare.... Not to scare you, but in Birmingham, not even the nutrionists and the Children's Hospital can tell you much about it. After a couple of months and mistakes, it does however become pretty routine. We still go on vacation and out to eat, to birthday parties and family functions. It just takes a little more thinking ahead on my part. Any, feel free to email me aphipps@charter.net. I would love to hear from you.
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Post by MaggiesMom on Jun 26, 2004 20:53:19 GMT -5
Thanks for clearing all that up for me! I'm sure there are other people that may have thought the same thing.
Maggie's had constipation all her life and some other things that have made me think twice that she may have it. But, when we went last year to UVA to get her thyroid panel done, I asked if they could do the celiac's panel too. They said "Oh it's on the same panel and the doc would tell you if he saw anything that was unusual."
I'm afraid that they have no clue what they are talking about. I know Maggie's pediatrician said we'd have to do stool samples to find out if she had Celiac's! I printed info off the internet so he'd know that there was blood work that could be done now.
I have to educate our doctors, even the good ones, so any info I can find out helps all of us.
Thanks. Hope that biopsy is negative.
Oh yeah, I heard that there is a good website for a celiac's diet, but I can't find the name of it. Search Celiac's diet and you'll find several things that may be of help.
We'll be praying for you all!
Robin M - maggie's mom
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Post by PaigesMom on Jun 27, 2004 8:05:47 GMT -5
Robin,
That is totally nuts! Isn't it a shame how we have to even educate the medical professionals!
There is a blood test called a Celiac Panel, and it is NOT in the same T4 and TSH tests that they run for the thyroid, lol.
The funny thing is that I had to actually argue with my dr. to get the panel done this time - boy was she apologetic. I guess I'm glad that "just because" of DS she isn't using her as a medical experiment and testing her for everything that comes down the pike, but at the same time my pediatrician has to realize she has a "higher" chance of CERTAIN things because of the DS -it's a double edged sword if you know what I mean.
We go to GI tomorrow, I'll keep posting.
Thanks for your support!!
Debbie
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Post by Kristin on Jun 27, 2004 23:42:54 GMT -5
My 5 1/2 year old daughter, Clarice, tested positive for only one of the screening markers, so they declared her gluten intolerant and refused to do a biopsy. Because her intolerance is so sensitive, I cook as if she was celiac positive. Celiac.com is an excellent web site that lists over the counter grocery store products as well as recipes, and specialty products. Clarice was further tested and found to be intolerant to soy, milk, eggs, lettuce, broccoli, cabbage, pepper, peanuts, and a few more in addition to gluten. For about 3 months or so I tore my hair out making the transition to gluten-free. (This was before I knew about the other intolerances.) I found that grocery shopping takes longer because I read labels, and I try to vary her diet. Restaurants can be tricky because they don't always tell you all of the ingredients. When I go to italian restaurants, I usually bring Clarice a sandwich because they often don't have gluten free dishes. I will say that Clarice's intolerances cause her to go awhile between BMs then have a massive blow-out followed by diarrhea and hyperactivity for a couple of days. I have found that getting everyone to stick to her diet has been well worth it. I have found that eating rice pasta and other gluten-free foods has even lowered my cholesterol, so it isn't that bad.
The Celiac Disease Foundation reported that there is a genetic test for Celiac now that is done with a blood draw. Some insurance companies don't cover it, but it is an alternative to having to put the person back on gluten to do the biopsy.
If you want some tips for gluten-free cooking...I'd be glad to share some of my experiences with you if you need to take that journey.
Kristin
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Post by laurasnowbird on Jun 30, 2004 15:48:32 GMT -5
Debbie, When are you going to have the biopsy done? I hope that it turns out she doesn't have celiac disease, but if so, I'm sure you can manage it! My best friend is a celiac, and she was asymptomatic. Sometimes the first symptom can be unexplained anemia and serious fatigue. She has always been thin, and unlike the majority of celiacs, she was constipated. She ended up in the hospital over a year ago because she was feeling awful, and her blood iron was so low that they contemplated a transfusion. That was her first real clue that something wasn't right. It took months for the medical community to figure it out! She is a "gold standard" celiac, (really severe) but after a year of strict adherence to the diet, her last biopsy was completely normal! I sent her a number of websites when she was initially diagnosed, so I'll copy them here for you. This is the one with the antibody charts: www.omlabs.com/serv/pu_april_02.html Toward the bottom of this one - Indications for Celiac Disease Screening: (the picture is pretty interesting too!) www.clinipath.net/~subinews/page2.html Quest Diagnostics publication, the second page has excellent information. www.questdiagnostics.com/hcp/files/02fall_newsletter.pdf Pretty clinical, but some good information here as well: www.biofons.com/products/celiac/tTG-ELISA.htm Celiac support and information: www.celiac.com/ www.celiac.org/ I like their slogan "We help you separate the Wheat from the Chef". This one has recipes and cookbooks too! www.glutenfree.com www.csaceliacs.org/infocenter.html This one is a place to shop for gluten-free products store.yahoo.com/glutenfreeoutlet/ So is this one: www.glutenfreemall.com/ Another place to shop for gluten-free foods - I like the look of this one.. www.gluten-free.tc/Good luck, and let us know how the test turns out!
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Post by PaigesMom on Jun 30, 2004 19:13:40 GMT -5
Laura,
THANK YOU so much for all of those websites you posted and your time. That was really sweet of you!!!
Paige went to GI on Monday - they still dont think she has short segmented Hirschprungs, but they said IF she did, they would not be able to surgically correct it anyway and her constipation would just have to be managed with food, fiber and laxatives.
The GI dr. said that if she has Celiacs that the constipation factor would have been the true key for her. She said the milk/soy/rice intolerance might be related but I could find out that it is still separate.
I asked her what the chances are that the blood work could be false. She said that the "newer" celiac panel as well as the older one was performed and they were both positive. She said that it is always possible but the chances are probably about 2% that she DOES NOT have it. Not very good odds, huh?
Well keeping my fingers crossed and sending prayers up on this one. I'm waiting for a date on the endsocopy - they told me August 17th - not a chance, to long a wait for me, so they're trying to work her in.
Thanks again for all of your time.
Debbie
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Post by Ashlea on Jul 1, 2004 10:20:46 GMT -5
I'm sure you already know this, but you can not change her diet before the test. Also, Chandler was diagnosed as "lactose intolerant" and had allergies to bananas. After several months on the gluten free diet, he is now able to eat both bananas & milk products.
Here's a new article on Celiac posted today...
Jun 30, 6:05 PM EDT
Celiac disease too often missed; report highlights unusual symptoms
By LAURAN NEERGAARD AP Medical Writer
WASHINGTON (AP) -- Celiac disease isn't nearly as rare as once thought: Roughly 3 million Americans may have the severe digestive disorder, most undiagnosed and thus suffering unnecessarily, an expert panel told the National Institutes of Health on Wednesday.
On average, patients suffer symptoms for 11 years before they're diagnosed, because the disease, triggered by the gluten protein found in certain grains, is so little understood even by physicians, the panel found.
Simple new blood tests can help diagnose celiac more easily today than just a few years ago, but only if doctors know to order them - and many patients complain of symptoms very different than those long taught in medical school.
"We have a very effective treatment - a gluten-free diet," said Dr. Charles Elson of the University of Alabama at Birmingham, the panel chairman. "But if physicians don't recognize when to test for the disease, patients are going to suffer needlessly."
The panel urged NIH to launch a major education campaign for doctors and the public to improve awareness of the myriad symptoms, a recommendation that won applause from celiac advocacy groups.
While the federal agency had no immediate comment on an education campaign, it convened the three-day meeting in part to raise the profile of the little-known disease, and reports from such NIH-convened panels often influence physician practices.
Celiac disease occurs in people with a genetically spurred intolerance of gluten, found in such grains as wheat, barley and rye. When they eat gluten, the immune system reacts improperly and damages the inner lining of the small intestine, blocking proper nutrient absorption. Untreated, it can lead to serious vitamin deficiencies, bone-thinning osteoporosis, occasionally even gastrointestinal cancers.
Doctors long thought of celiac as a childhood ailment - as one NIH panelist put it, too-small youngsters with large pot bellies. But it can show up at any age, and is most often diagnosed in middle-aged Americans.
Classic symptoms include diarrhea, abdominal pain, gas, bloating and weight loss.
But many patients don't experience those signs and instead report so-called atypical symptoms, including a blistering, itchy skin rash, anemia, short stature, delayed puberty, infertility and tooth enamel defects.
In fact, patients without the classic intestinal symptoms may be the most common celiac sufferers today - and recognition of that fact, thanks in part to the new blood tests, has spurred higher prevalence estimates, Elson explained.
Up to 1 percent of the U.S. population now is thought to have celiac, the panel concluded. That's roughly 3 million people, double an estimate published just last year - yet just a fraction, perhaps a tenth, are diagnosed, Elson.
Most at risk are relatives of celiac sufferers, people with Type 1 diabetes or Down syndrome, and people with other autoimmune disorders.
Most patients recover with a gluten-free diet for life. But gluten can be hidden in foods not commonly associated with grains, such as some candies and soups, making adherence difficult.
The panel also urged better testing and labeling of gluten in foods. A bill to improve food labeling is pending in Congress.
For the diagnosed, the panel recommended six elements key to disease management:
-Consulting a dietitian.
-Education about the disease.
-Lifelong gluten-free diet.
-Identifying celiac-caused nutritional deficiencies.
-Access to an advocacy group.
-Continuous follow-up by appropriate specialists.
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Post by PaigesMom on Jul 1, 2004 15:19:35 GMT -5
Ashlea,
Thank you! I am going to email you privately rather than keep going on the board. Paige has alot of the same symptoms Chandler did and I would love to hear more about your experiences.
Debbie
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Post by heatherandgabby on Jul 3, 2004 9:37:00 GMT -5
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Post by Ashlea on Jul 6, 2004 18:57:52 GMT -5
Debbie -
Not sure if you've had a chance to email yet, just checking cause I've been having email problems....
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