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Old 05-25-2011, 08:50 PM
mg12061 mg12061 is offline
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Hello I'm new to this forum but have posted on both the child neurology and stroke forums. My daughter is 14 yrs old,she has Down syndrome, moyamoya disease and a history of strokes.
She's been having some puzzeling health issues lately that have prompted me to have the Dr.s test her for celiac disease. The Dr. gave me the results just the other day and said that the "normal" numbers on this test would be under 20 and My daughter's were 150. It was a blood test. We'll be seeing a gastro. dr. for further testing to confirm celiac disease(or disproveit) . I'd love to hear any information any one has to share either on the diagnosis or management of this disease. How where you diagnosed and are the tests ever a false positive. I know that they can be a false negative from what I've read so far. I look forward to hearing form some of you who have BTDT...
Mary Grace
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Old 05-26-2011, 01:03 PM
Zonulin Zonulin is offline
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Hi -

I'm sorry your daughter is having health problems Have you been shown the test results so you can see where the "150" is coming from? About 8 years ago, my son took the Celiac Panel test; only one of the celiac markers was positive - the Antigliadin IgG Antibody test. So he did not have celiac, but he was making antibodies to deal with gliadin (the protein in wheat). He also tested positive for Candida albicans, H. pylori, elevated levels of mercury and lead, and his immune system was/continues to be shot (per the Immunoglobulin Panel test). The immune testing also showed he was IgA Deficient, making his mucosal membranes more vulnerable to all sorts of evil things, as well as skewing at least one of the Celiac Panel test results.

If I were you, I would:

1. Ask to see the results of the celiac testing.
2. Ask whether the doctor has checked to see if your daughter is IgA Deficient (they should be doing this for all celiac testing, since it skews the results)
3. Ask yourself questions about her intake and outtake -- what is she eating and what do those subsequent poops look like? My son had poops of a chocolate pudding consistency -- completely unformed. That's a sign of a lot of fat in the stool, which shows malabsorption. He also had frequent diarrhea and vomiting.

Knowing that gluten/gliadin was an issue for our son, we opted to go to Enterolab for further testing at www.enterolab.com This testing confirmed he is gluten intolerant and has a gene for it. We made some sacrifices to pay for the testing (I think it was about $300 total, but much cheaper than the $15,000 for our trip to the Mayo Clinic).

There's also a lot of information on this forum in The Gluten File, created by Cara, whose daughter also had numerous health problems. The Gluten File also has links to numerous studies showing the link between gluten and neurological problems - the more you know, the more you will WANT to know...more!

I'm sorry no one responded to you as quickly as they might have in the past -- most of us are eating radically differently from the way we used to and have chosen to eliminate ALL grains from our diet, seeing the links between carbohydrates and insulin, and the links between insulin and diabetes, heart disease and obesity. Hopefully others will offer advice, but these days, I'm not sure!!!

Karen
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Old 05-26-2011, 01:43 PM
mg12061 mg12061 is offline
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Karen, Thank you so much for all that information! I like the questions you mentioned to ask.These are exactly the things I need to know before our appt. with a gastro. Dr. Kathleen is 14 and was born with Down syndrome (making her 30% more likely to have celiac). My brother has celiac and I'm not sure if anyone else in the family does. She has been constipated all her life. But Over the last 2 months she's had Diarhea on and off. She may go 5-7days with a BM but then really loose. she has stomach pain (never did with the constipation before). It gets really bad around her menstrual cycle which i've read happens to a lot of women even when they're gluten free. she even has some bladder changes. She does have have neurological deficites from a pretty severe stroke which was caused by the moyamoya disease. I will use your information to do some more research, I totally agree that the more info I get the more I want!Thanks again,
Mary Grace
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Old 05-29-2011, 05:30 PM
Zonulin Zonulin is offline
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Hi Mary Grace -

It does sound as though she is genetically predisposed to have problems with gluten (of course, I believe that if you're human, you're genetically predisposed to have problems with gluten). How devastating to have a child have a stroke - ! I cannot imagine what you've been through. Her stomach pain could be caused by gluten or a host of other things -- certainly will be good to sit down with the doctor and go over those test results, and maybe also suggest testing for H. pylori, C. albicans and other common but debilitating problems caused by food. It will be good to get some answers so you can make the appropriate changes - hopefully the problem is "only" gluten, and your daughter can find some new favorite foods she likes!

Karen
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Old 05-31-2011, 08:54 AM
can can is offline
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Smile Low Carbs & Oxalates

Great information. Also, cut down on as many toxins as possible, like all processed foods. It took me over 50 years to figure out that I ( docs were clueless--THEY GAVE ME EVERY OTHER DIAGNOSIS ) was gluten sensitive ( thru Enterolabs ) and have been getting weaker over the past 15 years or so but now after going gluten-free, grain-free, processed food-free, it has taken me around 2 years to start turning things around. One huge problem that I still have is a very bad yeast, mold and fungus problem ( probably due to gluten ) and with a very strict low carb and low oxalate diet AND LOTS OF VITAMINS AND MINERALS plus prescription anti-funguls, things are starting to turn around but very slowly. You might also want to consider a hair & mineral analysis since, in my opinion, many blood tests do not tell the TRUE story. It helped me and my son in regards to supplementation with vitamins & minerals. GOOD LUCK
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Old 06-05-2011, 08:12 AM
mg12061 mg12061 is offline
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Kathleen has an appointment with a GI Dr. in 3 weeks. I'm so glad we didn't have to wait too long. Any advice before our appt.?
Mary Grace
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Old 06-06-2011, 04:06 PM
Zonulin Zonulin is offline
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Hi -

That's good you're able to see the GI so quickly - we had to wait 4 months... Definitely ask for a breakdown of the "celiac" test results - what does "150" mean? Bear in mind that if your daughter is IgA Deficient, that will skew the results of the testing (to a false negative). And if she has not tested positive for celiac, ask whether the Antigliadin IgG Antibody test was included in the panel, as that will show whether she is gluten intolerant.

I just read that 47% of our population (in the U.S.) is gluten intolerant because we have stopped growing dozens of types of wheat and have concentrated on only growing about 5 types, all of which are extremely high in the gliadin protein. Also, our reliance on convenience/processed foods, which nearly always contain wheat, has skyrocketed.

And I would keep an eye on what's going on in the elimination department - keep track of the subsequent poops after each day's meal. She may also be intolerant of other foods, which can be tested for using blood serum testing for IgG reactions. The most common tests for an IgG response to a food are the ALCAT or the ELISA. Keep in mind that the old-fashioned IgE testing (usually a skin prick test) only tests for immediate reactions to foods, and you would've spotted them on your OWN already! These would include an inability to breathe after eating peanuts or seafood causing hives, etc. If the doctor recommends IgE testing, you will be wasting your time and money...this happened to us IgG reactions, which may occur hours or DAYS after a food is eaten, are much more difficult to discover.

Also, as others have said, there may be many underlying problems at work here, too. I mentioned a number of things my son had going on which were in addition to his problem with gluten - all of them added up to making him constantly nauseated and skeletal for two YEARS while the doctors offered nothing but dangerous looky-loo "testing" (X-rays, MRIs, etc.).

So, to sum up , after getting the info on the celiac test results, ask about IgG reactions to other foods, ask about testing for C. albicans (occurs when the Standard American Diet is followed and caused by carbohydrates and sugar, since the body recognizes carbohydrates as sugar). Ask about testing for H. pylori, which is also very common these days. I know some teenagers who take glutamine and digestive enzymes to help their gut issues, as well as a good probiotic (in this age of ANTIbiotics). Let's hope that the doctor is receptive to detectve work - so many of them are burned out and just not all that interested. So you will need to join the ranks of "angry moms" who push and push and push until some answers are found! By the end of our 2-year trial by fire, the nurses were literally running from us when my son had any type of follow-up appointment. But what could I do but push when my son was starving to death and vomiting every day? Drag your husband with you if necessary - that's what I did during the more "challenging" doctor appointments.

Karen
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Old 06-08-2011, 12:07 PM
Zonulin Zonulin is offline
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It looks like Braintalk is having problems and has not been able to get rid of the Spam (see above from "Asydraferee"). If you read the Announcement from Dan Hoch (at the top of each forum) you can see that this is not the only forum with this problem...and numerous requests to the volunteer moderators have not eliminated this type of Spam. So just ignore the creepy "posts" from the even creepier Spam-ers until the administrators are able to block or delete these muckleheads. This forum's days may be numbered if we get much more Spam...

Karen
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