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Celiac With Crohns Ileio Colitis
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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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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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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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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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