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Celiac With Crohns Ileio Colitis


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2 replies to this topic

#1 mothernature

 
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Posted 07 October 2008 - 08:52 AM

I am new to this forum and hope to get some helpful advice from all you. My 17 yr.old son(2 weeks shy of 18) has just been diagnosed with celiac and Crohns ileio colitis. We received his diagnosis quickly after a complete GI scope.
The GI doctor appears to be on the ball, having concluded the diagnosis, however, my hesitation is when he told us to look it up at WebMD and ask him any questions. While the diagnosis most likely is correct, I am left wondering if we should find another doctor to review the tests to either exclude or include any further findings. Also, my son is continuing to lose weight( most likely his anemia), while other symptoms have been improving. The doctor didn't suggest a nutritionist, is this a good idea?
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#2 ravenwoodglass

 
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Posted 08 October 2008 - 03:53 AM

I am new to this forum and hope to get some helpful advice from all you. My 17 yr.old son(2 weeks shy of 18) has just been diagnosed with celiac and Crohns ileio colitis. We received his diagnosis quickly after a complete GI scope.
The GI doctor appears to be on the ball, having concluded the diagnosis, however, my hesitation is when he told us to look it up at WebMD and ask him any questions. While the diagnosis most likely is correct, I am left wondering if we should find another doctor to review the tests to either exclude or include any further findings. Also, my son is continuing to lose weight( most likely his anemia), while other symptoms have been improving. The doctor didn't suggest a nutritionist, is this a good idea?



It is your right to get a second opinion if you feel it is needed. However if he was diagnosed by the scope then the chances of celiac being a false diagnosis is slim, real, real slim. Your doctors advice to seek out web info on celiac and the ways to cope with it was a good one. I hope you by now have your son gluten free. You may find that the colitis goes into remission really quick once he is firmly on the diet. You could consult a nutritionist or a dietician but unfortunately many of them are not really knowledgeable about celiac. This site is one of the best ones there is to learn the ins and outs of the diet and all the nonfood things we have to look out for. It does take some getting used to and the diet can seem frustrating at first but the rewards of healing and good health are well worth it. Hopefully the doctor did tell you that all first degree relatives need to be tested whether they seem to have symptoms or not. His Mom and Dad, all sisters and brothers need to be tested. If Mom or Dad come back positive then all of their first degree relatives need to be tested. Celiac is strongly genetic and the presentations can vary. Please ask any questions you need to and do feel free to vent. We have been there.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 dreamindarlin

 
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Posted 09 October 2008 - 05:41 AM

I am new to this forum and hope to get some helpful advice from all you. My 17 yr.old son(2 weeks shy of 18) has just been diagnosed with celiac and Crohns ileio colitis. We received his diagnosis quickly after a complete GI scope.
The GI doctor appears to be on the ball, having concluded the diagnosis, however, my hesitation is when he told us to look it up at WebMD and ask him any questions. While the diagnosis most likely is correct, I am left wondering if we should find another doctor to review the tests to either exclude or include any further findings. Also, my son is continuing to lose weight( most likely his anemia), while other symptoms have been improving. The doctor didn't suggest a nutritionist, is this a good idea?



My son is only 6 and he was diagnosed as well by an endoscopy......However all of his blood test/markers have been negative for celiac. We have been on the gluten free diet for over a month now and he is no better......he is still having bloody diarehea, losing weight, severe stomach pain. His doctor told me he was "shocked" that his biopsy came back positive for Celiac's and lets try the diet to see how things go. He also said it could be some other things but he didn't want to "overwhelm" me right now. He is up at night with pain and I called and he goes in a few minutes back to the doctor. I am anxious to see what his new blood work shows and the bone scan results. I think he will order more test but who knows? We have a appt in NY at the Celiac Center on Nov. 6 for a second opinion but it will be such an expensive trip I don't see us making it there now. I will probably get him an appt at a big city (closest one is about 2 hours from me.)
I would suggest a 2nd opinion. I've read and read books and internet articles. A positive biopsy is conclusive of Celiacs Disease IF the blood test backs it up and the diet is working. However having a biopsy that suggests Celiacs there are also other causes that can mimic that on the scope. Hope this helps.....
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