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Son With Conflicting Test Results, Unsure What To Do Next


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10 replies to this topic

#1 ldslara

 
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Posted 11 January 2013 - 09:27 AM

In November both my 8 yr old son and I were diagnose by Gastroenterologists with Celiac disease based on TTG Iga blood tests of above 100, positive Endomysial AB IgA tests, family history (1st and 2nd degree relatives with dx Celiac), and moderate symptoms (no endoscopy). My 11 yr old son had a weak positive score on the (tTG) IgA of a 4 (the scale said Negative was 0-3, Weak Positive was 4-10, and Positive was above 10) and no symptoms besides mild environmental allergies. Our Ped GI ordered the full panel and some other blood work for him . Upon getting the full panel, through a different lab (the first lab lost some of his siblings tests for a time so we decided to go elsewhere) he received a stronger positive result of 51 on the Tissue Tras. AB, IgA (the scale was Less than 20 negative, 20-30 weakly positive, and above 30 Positive), negative Endomysial Ab Iga and negative Tissue Tran AB, IgG (score of 5 with above 20 being positive). My questions are as follows:

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.
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#2 StephanieL

 
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Posted 11 January 2013 - 11:10 AM

So he's had 2 blood testes that are + and a family history.

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.
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#3 ldslara

 
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Posted 16 January 2013 - 11:32 AM

So he had his Pediatric Gastroentronologist appt yesterday. The doctors said he felt the odds were 50/50 that they would find damage if they did do the endoscopy. He recommended we do one, becuase it would help us to be surer that a gluten free diet was really necessary. He is willing to dx him offically - write letters, or whatever is necessary, to get him any accomidations needed, without the endoscopy, but he says that since a gluten free diet is difficult, he feels like having more evidence could be important to him later, and he'll be more likely to cheat or return to a regular diet without it, and that if there is no damage found there is no reason for him to be on such a restrictive diet. He said people could have a high score like my Son's indefinetly, and don't necessarily ever develop "full blown" Celiac disease.

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?
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#4 tarnalberry

 
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Posted 16 January 2013 - 11:37 AM

What if the endo is negative? Chances are it would be very hard to keep him gluten free, even if you wanted to.

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.
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Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
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#5 mushroom

 
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Posted 16 January 2013 - 11:58 AM

I am not a great believer in the endo being any more reliable than the blood testing. And let's say he has no current intestinal damage that can be found. Do you want for him to continue eating gluten until he does have it? By which time he may be very symptomatic? Better to head it off at the pass, I would think. As pp's have said, whether or not he cheats on the diet is going to be up to him ultimately. You say he is accepting of it and that may well continue to be so. It is not going to hurt him and may well prevent him from further damage. A clear endo could be a signal to continue eating gluten until he has problems. Just another way of looking at it.
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#6 mommida

 
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Posted 17 January 2013 - 06:57 AM

This is just my 2 cents in the pot now..

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.
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#7 Cara in Boston

 
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Posted 17 January 2013 - 07:19 AM

Two positive blood tests are more accurate than an endoscopy. Of course, if the biopsy comes back positive, you will have no doubts. But if it comes back negative, you will always wonder. There are many reasons a person with celiac disease could have a negative biopsy (human error, no measurable damage yet, biopsy wrong place, etc.) Having a negative biopsy DOES NOT MEAN YOU DO NOT HAVE CELIAC. It just means damage was not found. If you already know gluten is damaging to him, why consider continuing to eat it until the damage is severe enough that the doctor can find it? Continuing to allow the autoimmune reaction to go on also puts him at greater risk of developing other autoimmune conditions - some which cannot be "fixed" with diet alone.

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
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#8 ldslara

 
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Posted 17 January 2013 - 12:19 PM

I can see how doing the endoscopy would be good to know a little more and provide a baseline, and has a small chance of being useful if his numbers don't go down on a gluten free diet, but the expense, discomfort, and uncertainty about the meaning of the result makes the whole procedure seems more trouble than its worth right now. Plus I just read a study that talked about the increased risk of other autoimmune disorders the longer the delay is between start of symptoms and start of a gluten free diet, and a negative biopsy result would provide more disincentive to begin the diet. He really needs to do the diet, having a gluten free diet now is much better than risking getting diabetes, MS, or Lupus down the road. If at some point his attitude changes, and we have a hard time getting him to stay on the diet, we can do a gluten challenge and he could get it then still if we felt like that would help him with compliance. That's the biggest reason I see to do it, better compliance. Hopefully he will find he feels better on the diet, and won't need extra incentive.
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#9 mommida

 
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Posted 18 January 2013 - 08:49 AM

My daughter has both Celaic and Eosinophilic Esophagitus. There is a connection between the two.

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.
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#10 GretaJane

 
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Posted 18 January 2013 - 10:12 AM

Get a biopsy, NOT just an endoscopy! Some GI's do just the endo, but ends can often miss damage, and that is not enough for an official diagnosis to get qualified for studies or trials. Not to say that the biopsy can't miss damage too, but its more likely to confirm it. If its positive for damage, you and your son will always know for sure that all the trouble (and it is a significant burden) is for a really good reason, and there will be no going back if it gets too difficult or if he eats gluten and has no symptoms. Symptomless gluten ingestion in celiacs is common starting after childhood, but damage is still being done. I would not wait for a biopsy, as reducing gluten consumption will throw off the results and you said your house is going gluten free. If the biopsy results come back negative, I would eliminate gluten anyway and assume the blood tests are correct and not discount them. It could be that the celiac has not been active long enough to do measurable damage to the intestines. I would not think you would get a false positive on the blood tests, but false negatives seem commonplace. If even one blood test was positive, along with the strong family history, I would take the docs offer to diagnose positive for celiac.
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#11 Madagascar

 
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Posted 18 January 2013 - 09:38 PM

if it were me, i'd skip the further testing. i think you have more than enough evidence to say he needs to avoid gluten. with the family history, the tests . . . well, it seems like you have a lot of evidence.

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.
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Childhood: canker sores, zillions of cavities, and multiple dental enamel defects (not decay). Acne began at age 9, became cystic acne at 15ish, was bad til early 20's, occasional break-outs now only if i eat certain foods.
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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