Waiting For Results And Planning Next Steps

[October3]

My 6-yr-old had his colonoscopy/ endoscopy yesterday. We should have results by the end of the week. Our GI feels confident that if he has celiac disease it will show on the scope, but from what I have read I am not as certain. While waiting for results I'm considering what will be our next moves in either case and would love some input from those who know more than I.

As background, my son's symptoms are not clearly celiac and also are not necessarily things I would see obvious improvement in with an elimination. Primarily he has recurrent anemia. When he was a baby he had diarrhea with some blood but this resolved by the time he was 1. However, he was anemic and had a hard time getting iron levels built back up. Since then he has been anemic again pretty much every time we have checked after a period of not supplementing. So he obviously isn't absorbing nutrients (or at least iron) well. He also has some damaged tooth enamel and a moderately elevated tTG (48). Then he has a couple things that I'm not sure are indications of anything or possibly just due to the anemia - a tendency toward meltdowns (especially at meal times), difficulty with attention and sitting still (again - dinner time is the worst), and bedwetting (which I haven't seen on any lists for celiac but have seen in regard to food sensitivities).

So I feel like something is going on with him. If he is negative on the scope I'm debating eliminating gluten anyway but our GI is not in favor of this - he feels that if gluten is a problem it will show on the scope, and he is very conservative when it comes to elimination diets. I would love opinions on that.

Also, hoping for some quick tips on the early days post-diagnosis in case the scope comes back positive. I have some experience with gluten free cooking - my daughter has a lot of food sensitivities and we have trialed her off gluten several times - so that part isn't as intimidating. The things I worry more about are things like:

1. How to tell the school - should I ask for a meeting with the nurse/ teacher/ principal/ food service people, or just bring it up to the teacher at first and say he shouldn't have anything we didn't send.

2. Cross contamination issues - Do we need to purchase all new kitchen stuff? I'm not sure, like I said, that we will be able to see clear symptoms if he is exposed so I worry about cross-contamination more than I would otherwise. I don't want to thing he's healing when actually we're giving him some low level exposure.

3. What is the best strategy for explaining it to him. We've brought up the possibility but any strategies for telling a young school aged child about celiac disease?

Thanks for thoughts and input.

[Dixiebell]

Welcome to the forum October3.

Did your Dr. run a full celiac panel? If not you should get that done. If that has been done you can go ahead and start a gluten-free diet.

Celiac is not the only form of gluten intolerance/sensitivity. It can manifest in many different ways. You can look up Gluten Sensitivity Spectrum.

1.If you want him to eat school food then yes, talk to everyone. I personally would not trust our school to feed my son. We send lunch and snacks everyday. And yes, there is still a risk they can get something they shouldn't, it's just par for the course.

2.Yes. Anything that is scratched, non-stick pans, plastic and wood utensils, cutting boards, plastic storage containers, cast iron pans, and he will need his own toaster.

3.I think there are some books for young children on celiac disease. You could check your local library.

You and your family will make mistakes until you master this, it's ok. Don't give up.

[October3]

Thanks for your reply Dixiebell. The GI did not run a full celiac panel, just tTG. If the issue is gluten sensitivity as opposed to celiac would that show on a celiac panel?

I'm not sure I trust that school either. Especially since I'm not sure we would be able to detect an exposure. I'm thinking maybe at least initially we will just send everything.

[Dixiebell]

To be completely honest, I'm not sure. But I am willing to bet someone on here does.

[October3]

Well, his biopsies were normal.

Sigh.

We're thinking our next step will be to work on building up his iron and make sure generally he is eating well and getting enough sleep so we can rule those things in or out as causing the behavior stuff. The GI wants to check his tTG again in 3 months. If it is rising we will consider eliminating or greatly reducing gluten based on how other things are going (if behavior is better with normal iron levels and adequate sleep then maybe just reduce gluten, otherwise eliminate). If it has dropped we'll continue to watch it. Basically we are thinking we won't be sure improved behavior is due to going gluten-free if we're also working on his iron levels at the same time. So we have to stagger the interventions I think.

Anyone care to critique this plan?

[Dixiebell]

It is always possible that damaged areas were missed. Do you know how many biopsies he took? The low iron could also be a symptom. Has he had any other vitamin or mineral levels checked to see if they are low or normal? I would get those checked as well considering he damaged tooth enamel.

The information I found about low iron and behavior was about children with ADD/ADHD. There are some children that have been helped with a gluten free and casien free diet.

Celiac tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level

Deamidated Gliadin Peptide (DGP) Antibodies, IgA & IgG

[mushroom]

Hi, October 3. I have just read this thread and have a couple of observations: The blood test and the biopsy are designed to test for celiac disease, which is one form of gluten sensitivity (and apparently the only one your GI believes in, which is not uncommon among GI's who have not stayed current in gluten research.). Without trying to undermine the patient/physician relationship, most doctors are coming to recognize other forms of gluten intolerance and a fairly large percentage of the posters on this forum have tested negative for celiac disease. Those who are non-celiac gluten sensitive often have the same (or virtually the same) symptoms as celiacs, they just do not test positive on the tests. Many doctors, as yours did, then dismiss gluten as being the problem. Unfortunately, if gluten is the problem, cutting back on gluten or greatly reducing it is not going to be of much help. Gluten is an all or nothing proposition, celiac or not..

As for symptoms, nutrient deficiencies, defective tooth enamel, behavioral problems, meltdown tantrums, attention deficit, are all of course associated with gluten intolerance, apart from the GI problems..

As I understand it, you have been working on his iron levels since he was a baby. Have they been consistently monitored all along? It just seems like keeping doing the same thing and expecting a different result may not be a reasonable approach. By all means keep his iron levels up, this is a must, but I think after six years something else might be called for?? I would do a strict gluten-free trial for the next three months before his next GI appointment and then see how his behavior is, how his iron is, how his TtG is. And, I would not tell his doctor that is what you have done until after he makes his assessment! And yes, a strict trial would require you to get rid of all contaminated cookware, toaster, colander, cutting boards, etc., not use wheat flour in the kitchen (because it becomes airborne and settles on everything), and check all his supplements, scripts, personal care items for gluten.

This is just one humble non-medical, looking in from the outside, opinion.

[elle's mom]

Hi, October 3. I have just read this thread and have a couple of observations: The blood test and the biopsy are designed to test for celiac disease, which is one form of gluten sensitivity (and apparently the only one your GI believes in, which is not uncommon among GI's who have not stayed current in gluten research.). Without trying to undermine the patient/physician relationship, most doctors are coming to recognize other forms of gluten intolerance and a fairly large percentage of the posters on this forum have tested negative for celiac disease. Those who are non-celiac gluten sensitive often have the same (or virtually the same) symptoms as celiacs, they just do not test positive on the tests. Many doctors, as yours did, then dismiss gluten as being the problem. Unfortunately, if gluten is the problem, cutting back on gluten or greatly reducing it is not going to be of much help. Gluten is an all or nothing proposition, celiac or not..

As for symptoms, nutrient deficiencies, defective tooth enamel, behavioral problems, meltdown tantrums, attention deficit, are all of course associated with gluten intolerance, apart from the GI problems..

As I understand it, you have been working on his iron levels since he was a baby. Have they been consistently monitored all along? It just seems like keeping doing the same thing and expecting a different result may not be a reasonable approach. By all means keep his iron levels up, this is a must, but I think after six years something else might be called for?? I would do a strict gluten-free trial for the next three months before his next GI appointment and then see how his behavior is, how his iron is, how his TtG is. And, I would not tell his doctor that is what you have done until after he makes his assessment! And yes, a strict trial would require you to get rid of all contaminated cookware, toaster, colander, cutting boards, etc., not use wheat flour in the kitchen (because it becomes airborne and settles on everything), and check all his supplements, scripts, personal care items for gluten.

This is just one humble non-medical, looking in from the outside, opinion.

I totally agree with everything mushroom said. What is the harm in trying and you will be surprised at the difference true gluten free can make!

[October3]

We have considered going ahead and eliminating gluten. The problem with doing that is I'm afraid we'll see results and assume it is the gluten (therefore leading us to conclude that we need to eliminate gluten long term and strictly) when it actually could be any number of other things, such as the resolution of the anemia.

To clarify, he has not been supplemented with iron all along. We supplemented from the time we noticed the anemia (around 9 months) until nearly the age of 2 when his iron stores were finally in the normal range. We didn't supplement and didn't check him again until age 4 I think. At that time we were thinking the anemia was because of the loss of blood from colitis in infancy. So at age 4 we gave him a multivitamin for 2 or 3 months and his anemia resolved which led our pediatrician to think it was diet related. Her thought was that if he had a malabsorption issue it wouldn't have resolved so easily. We didn't check him again or supplement until now. I have suspected malabsorption all along, but I have to admit he isn't the best eater in the family so it could be that too.

The GI also said tTG can go back to a normal level without any intervention. So I'm wondering if the tTG was a fluke, or a false positive, or indicative of something other than celiac. I think if he has another tTG and it is still elevated, or even more elevated, we will feel pretty confident the issue is related to gluten. Plus, if by then the anemia has resolved we can have a true baseline to compare against when we eliminate gluten. I may also take him to our naturapath to get IgG testing done and see if gluten comes up as positive. I'm thinking it could be any number of other food intolerances in addition to or instead of gluten.