Son With Conflicting Test Results, Unsure What To Do Next
Posted 11 January 2013 - 09:27 AM
Is an Endoscopy the best thing to do next? I believe my son's Ped GI will let us decide if we go forward with one or not, and would be willing to diagnose him based on his TTG IgA score and family history alone. A part of me would like to to the Endoscopy, just to make a stronger case for him gluten free, since I realize it will be difficult for him and he might question the diagnosis as he ages, but if no damage was found, would it really be wise to keep gluten in his diet with his blood work and our family history? I would be concern that either the doctor or lab missed something or that it was only a matter of time before his situation got worse. Is there any indication that a moderate score like his, without intestinal damage, would remain that way indenfinetely? Or is it certain to do damage eventually, even if he has none now? If he was your son, what would you do next?
I guess I am having a hard time judging the pros/cons of going forward with the Endoscopy and if it is worth it. It is an expensive test to do and I'm not sure if it should change our course of action. For a little more background, my son seems to expect that he will have to adopt the gluten free diet soon, and is largely OK with that. Whatever happens, he will be eating largely gluten free since we are doing that at home and for family meals.
Thanks in advance for any advice or insight you can provide.
Posted 11 January 2013 - 11:10 AM
He's got Celiac. I would never put my kid through an endoscopy when the facts are clear. If the GI is willing to officially dx. based on all this, take the dx and get the kid gluten-free. He'll learn in time what eating gluten does to him if he chooses not to follow the diet. Also, as Mom you do the grocery shopping I assume. You do have some control in his diet. Will it stop him from "cheating"? No, but it's a start.
Posted 16 January 2013 - 11:32 AM
I'm torn - I don't want to make life more difficult for my son, so of course I wish he didn't need to go gluten free. Even though he will be gluten free either way at home, school will be a challange, and he's going into Jr. High next year. So on one level it seems like an endoscopy, if it turned out negative, would be a good thing. We would continue to monitor him and watch for damage, and he wouldn't have to live on such a restrictive diet right now. So I see the logic in what the doctor is saying. On the other hand, even if we go ahead and do the endoscopy and no damage was found, as I described before, I would worry. As I said, they could miss something. Even if there was really no damage, I'm not convinced that small intestine damage is the best thing to rely on to know if Celiac disease isn't really hurting him - especially now, when he's going through puberty, and alot of critical changes are happening. And I'm not convinced that the endoscopy would reduce the chance that he would cheat or revert back to a gluten diet at some point anyway. It would be more evidence, but I think compliance probably relates more to symptoms than anyting else. With or without the endoscopy, I suspect he may cheat. And if he cheats and doesn't have symptom, he's more likely to continue. Symptoms might convince him to stop, but I'm not sure that having an endoscopy is really that convincing.
From what I understand, if he really didn't feel any better on the diet after a year or so, and wanted to eat gluten again, he could then go on to do a gluten challenge for 6 months and test again, doing an endoscopy if his blood test was again positive. I'm leaning that way. It's seems like the most sensible course. And my son is on board with it. He's a great kid! I just wondered if anyone saw it more like the doctor does, that damage to the small intestine was what is really important and convincing, and no damage there would mean a gluten free diet was unnecessary, and it is better to do the endoscopy sooner rather than trying the gluten free diet first. The doctor said it was our decision, but he gave me the impression that having my son go gluten free now without the endoscopy would be over reacting and I would regret it. Does he have a point?
Posted 16 January 2013 - 11:37 AM
I would skip it, since you can get a formal dx. The likelihood of him cheating is related to many other factors, many psychological, IMHO. The manner of diagnosis is less likely, I would think.
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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Posted 16 January 2013 - 11:58 AM
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
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Posted 17 January 2013 - 06:57 AM
2 positive blood tests, at different blood draw times / labs, and a family history definately Celiac needing to be on a gluten free diet.
An endoscopy at this point *may* give you a report on the amount of damage that has occurred before changing the diet. This can be a "baseline" reading if it ever needs to be determined that a gluten free diet is effective for treating this case of Celiac. It can also rule out or diagnose any other illness/disease or congenital malformation or injury.
Posted 17 January 2013 - 07:19 AM
He has celiac disease and should be gluten free. A "weak" positive is a positive. He may just be in the early stages.
My 7 year old has celiac disease (blood test and biopsy). When he was diagnosed, I realized I had classic symptoms for 5 years and got tested too. My blood test was positive but my biopsy was negative. I went gluten free with him and all my symptoms went away. It is clear that I have it too. My older son (10 years old) gets tested every two years, regardless of symptoms. He just went in this week. The doctor (Celiac Specialist at Children's Hospital Boston) was very clear that anything out of range was a positive - no matter how slight. If any of his tests are out of range, that is enough to start the diet.
I get annoyed when doctors don't give the correct advice because they think the diet is difficult or inconvenient. My son's first doctor said he didn't have it because he had no symptoms. He didn't want me to start him on the diet based on his blood test because that would be "drastic" and "potentially unhealthy". When he couldn't explain his positive blood test, we found a specialist who diagnosed him after the endoscopy. We had no family history of any autoimmune disorders.
Everyone in the family eats healthier now because the two of us are gluten free.
Cara in Boston
Posted 17 January 2013 - 12:19 PM
Posted 18 January 2013 - 08:49 AM
She was just too sick to get the endoscopy when she was diagnosed with "probable" Celiac (blood panel and genetic test). She was 15 months old and was hospitalized for dehydration trying to eat gluten for the testing. She was hospitalized on average once a year for dehydration, she just went into a vommitting cycle. Things seemed fine gluten free until she was 6 and then gluten symptoms started again, but much worse. She had the endoscopy with biopsy to diagnose the Eosinophilic Esophagitus when she was 6 years old.
We will never know if if she had both conditions from the start.
Posted 18 January 2013 - 10:12 AM
Posted 18 January 2013 - 09:38 PM
my understanding is that the endoscopy biopsies can be hit or miss. the small intestine is long enough that it would be easy to miss any damaged areas. i've read that if a biopsy is done, it needs to be at least 4 or 5 samples and they need to go several inches in, not just inside the beginning of the small intestine. i kept seeing the "duodenal bulb" mentioned as being one site that absolutely needed to be tested, although i'm unsure where that is.
my young adult children (20, 24, 26) all went gluten-free based upon the youngest's improvement with a diet change and my testing positive. none of them got tested, but they all feel better. they understood the implications of potential damage in the future - i think it'd be very hard as a middle schooler, but it's hard for young adults who want a social life too, and they manage. i work in an elementary school and we actually have several students who are gluten-free and they do ok. your son seems to have a fantastic attitude, and i imagine he'll adjust just fine and probably feel better with it.
1968 - allergic to bacon (arm rashes) & orange juice; sensitive to soy
1970s - lots of digestive problems, allergy to citrus, citric acid, cinnamon, lactose intolerant, rosacea from foods
1980s - allergic to oregano, basil, thyme, pork, strawberries, paprika, smokehouse-type seasonings, peppers
1990s - discovered digestive enzymes (YAY!) and my stomach issues resolved by 90%
2012 - diagnosed with celiac via blood tests (tTG) and genes (HLA DQA1*0201: DQB1*0202)
After learning about celiac, it is obvious my mom had it (ulcerative colitis), my brother has it, and my 3 young adult children have it (2 have digestive problems + anxiety; one has DH). we all went gluten-free november 2012.
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