Conflicting Doctor Advice Regarding My 4 Year Old

[MTsky]

I am new here and will try to keep this brief. Quick history: I, myself, have been gluten free since last summer. I had negative blood work, but due to my textbook celiac symptoms, my GI recommended me to try going gluten free. Within 2 weeks, I had put on almost 10 lbs and was feeling better than I had in ages. When I tried to add gluten back into my diet, I had very severe GI reactions. Since that time I have been in this limbo state of not really knowing if I have celiac or not, but assuming I do unless I can ever get myself to go back on a gluten diet to have a biopsy.

Now onto my son. He is 4 1/2 and has had chronic constipation since he was 2 and I weaned him. He has been on miralax daily since his 2 year well baby visit. I have just gone on with it, hoping it would get better. I have been concerned about it, but just shrugged it away. If I miss more than two doses, he will go days without having a BM. He has had episodes of random vomiting, but I always could associate it to when he hadn't gone to the bathroom for several days. He has a terrible appetite, and getting him to eat is a struggle. He was 50th percentile from birth until 6 months. At one year, he was 20%, at 3 years he was 5% and now he is at the 2nd %. Finally, a couple of weeks ago, I had enough and made an appointment with our ped. He suggested we get blood work for celiac, which I completely agreed with. I got a phone call from the nurse saying that our regular doctor was out of the office for the week, but a different doctor read the results and that he had a "weak positive for celiac, but definitely positive." I guess since I never got a definitive result for myself, I was not expecting it. That doctor told me to immediately put him on a gluten free diet and that our regular ped would be calling us as soon as he was back in the office to discuss it with me. We did and he suddenly started eating a ton throughout the entire weekend!

Then at the beginning of the next week, our regular ped called us back. He told me that his tTG was a 7, and that they do consider that a week positive. For a negative they want it less than 5. He then went on to say that although they couldn't say it was negative, it wasn't high enough of a number to say it was positive for sure, either. His advice was to keep him on a gluten diet for 3 months and to then retest him. If his numbers went up, then he would say that he definitely has celiac disease. He told me that we could do a biopsy, if I wanted, but that he did not recommend that at this time. So that is what we are going with, but I keep wondering if that is indeed that right thing to do. I hate to put gluten back in his diet if it is hurting him, but I just cannot label him as having celiac for life without having a sure answer. Should I push for a biopsy? Is that where we are heading, regardless? For the time being, while trying to talk to a few GI doctors about him, I have him now on an increased gluten diet. I just feel conflicted at what to do at this point. I also have a 2 year old daughter who I am wondering if I should have tested. She has a fabulous appetite, but is small as well. I was planning on waiting on her until I know for sure about my son, but I wonder if that is wise? Thank you for your input! You all seem to be very knowledgeable and helpful!

[Takala]

It is reading posts like this which let me know immediately that the poster must be in the USA, and that our medical system is still comprised of mostly complete...... idiots.

Rule #1. MAKE them give you a written hard copy, on paper, of the test results, always. Even if you have to go to the doctor's office and demand them in person. Different labs use different number scales.

Rule #2. If there is one thing that American doctors love doing, it is delaying diagnosis for as long as possible while people continue to suffer needlessly so the insurance companies can save $ money. The idiot who is refusing to proceed in a timely matter with diagnosis, AND telling you to continue to give your child gluten with a positive blood test result is doing malpractice. How you wish to deal with it is up to you. You know what the answer is, or you would not have posted here.

[mommida]

Keep a food journal. Keep notations of BM's, mood, symptoms, and if possible add airborn allergen count. (Compare this to weight gain and growth chart as time allows.)

If you do the gluten challenge, make sure they take enough biopsies. (Even "normal" looking tissue needs to be biopsied) Make sure this is a certainty! Do not waste your time having further testing done. Make sure that you understand what the endoscopy is being done to "rule out" or diagnose. An endo scopy can help determine if it is only one problem or a combination of problems.

If you are going to keep your child on a gluten free diet, keep the journal to see if there is a noticeable improvement.

Unfortunately a numerous amount of disorders present the same in children. & Some diseases are connected like Celiac and H. Ployri. infection.

I hope that is not confusing.

[mushroom]

Some labs use ranges for the tests such as: negative x > ( meaning less than x), weakly positive or equivocal x - y; and positive < y (or greater than y). So x might = 5, and y might = 10. Anything between 5 and 10 would then be no-man's land, or weakly positive, or equivocal, such as your son's 7. My personal feeling is that there is no such thing as equivocal , that if it is above the level of negative, it is a positive. It is perfectlyl reasonable to request that your doctor do an endoscopy with a result that is not negative if you would really like confirmation of the diagnosis and do not wish to make your son suffer for an additional three months. Of course, there is the chance that the biopsy will be negative, but that does not mean that you have to keep him on gluten for three months as the doctor requests. You are the mom, and you can decide how to raise your child. You do NOT need a doctor's permission to take him gluten free. Of course, not having a definitive diagnosis (if the doctor will not give it with your son's positive reaction to the diet) may be a drawback when he enters the school system and needs special accommodations to be gluten free. On the other hand, you can take him gluten free and then later do a challenge once he has fully recovered. Generally, these challenges are really 'challenging' and people do not make it beyond a week or two before going back gluten free because it is just too painful. At that point doctors will often give the formal diagnosis if you have it fully documented diet, symptoms, behavior changes, etc. If your own doctor will not do it, one of the celiac centers may do it.

Then there is always a genetic testing possibility. While not diagnostic, if you and your children all have one of the two major celiac genes, it would make a stronger case for a positive diagnosis without a positive biopsy..

Just another approach.

[MTsky]

Thank you all for your insight. My gut is telling me that we need to do a biopsy on him. When I got the first phone call saying that he was positive I was initially shocked and quite upset by it. It just made me so sad. After that reaction wore off, everything just made sense. I guess I am still in a state of denial about it all. For his future I need to know that he has a positive diagnosis. For one thing, it will make it easier demanding that a special diet be followed, and for another, I won't have this doubt that I am doing the wrong thing. In kids, it seems that diagnosing can sometimes be inaccurate. Is a biopsy likely to give us a false negative result? Is it really more accurate than the blood test? And how accurate would a blood test be on his 2 year old sister? I want to test her as well. I don't know why I am so conflicted by this when I know what I would tell someone else to do! I can't believe how hard it is when it is my own child.

[mushroom]

Testing youngsters, especially those two and under is always difficult. Dr. Rodney Ford, here in New Zealand, swears by the DGP (deamidated gliadin peptide) as the most reliable test in younger children and I would recommend that you ask that test be run on your children. It is very celiac specific. Since it is a newer test, many of the doctors are not familiar with it and just rely on the tTG. Unfortunately, a biopsy can be just as inaccurate as the blood tests. It depends on the skill of the GI, how many samples they take, how good the pathologist is......so, again, there is about a 20% error rate.

[MTsky]

Thanks so much! I will ask our doctor about testing them for DGP. That looks pretty promising as far as results are concerned. But, wow, up to a 20% error rate with a biopsy! That is part of my worry in doing it. We live in a fairly small area and there are no ped GI docs here and I am worried about someone doing the biopsy without having a lot of experience. I do think it needs to be done, though.

[1974girl]

We are doing the same thing so you have good company (or bad) depending on how you look at it. I have one celiac daughter. The other shows weak tTg but no endomysial antibodies. So they are having me retest her in 6 months. They did do a biopsy on this same kid a year ago and it was normal. But like someone said, it could have been an error in biospy. You have 22 feet of it and they take a snipets. But..I also wanted to mention one more thing. Hypothyroidism is notorious for causing elevated Ttg and also constipation. My celiac child has had that for 4 years. Your son could have just that or could have both. But...just consider having a thyroid test for him. My child grew like crazy after starting her thyroid medicine. (Again, those 2 diseases go together so he might have one or both) But if daughter #2 shows a higher ttg at her next one....I will not biopsy her. I will just go gluten free and save myself the $2500 deductible to put on gluten free food!

[mommida]

I really hate the whole concept of a gluten challenge.

Our daughter was quite young and ended up in the hospital for dehydration. Dehydration is very serious.

She was too ill to have the endoscopy at that point. She ended up having the endoscopies to diagnose and guage Eosinophilic Esophagitus. (It has now been recognized there is a connection between EE and Celiac.) If we could go back and determine if there was evidence of both when she was diagnosed at 16-17 months old with "probable" Celiac???

[MTsky]

It is comforting to know that I am not alone in this. Thanks again for your input. I had not even considered thyroid. That is definitely worth inquiring about as well. My father is a physician and trying to get a hold of a ped GI to get their advice as well. Luckily, he seems to be doing just fine right now, even though for the time being we do not have him on a gluten free diet. This is still consuming my thoughts, but I feel armed with much more knowledge now and hopefully will be getting some straight answers soon.

[MTsky]

I just wanted to update this. My son had a biopsy done that came back as normal. It was done two weeks ago and we immediately took him off of gluten. I am very interested to see what happens now. In the past two weeks he has gained a little over a pound. In the 10 months prior to that, he had not even gained that much. I know that one pound is not telling, but I am guessing that the number will go up over the next few months. In any case, we are thrilled that it appears that he does not have celiac, but if he does better on a gluten free diet, then we are just happy he is feeling better.

[mommida]

Glad to hear he is doing better!