Four Year Old Positive Blood Test - Awaiting Biopsy

[javic]

My son had a high positive blood test for celiac. We went to a gastroenterologist on Thursday who said we need to do the endoscopy and biopsy. The only date she had available this year is when we will be overseas. It will take another 6 weeks for her to have a free spot.

He does not have any pain, diarrhea, vomiting or rash from gluten. He barely has symptoms at all. I wonder if it will matter if we leave it another 6 weeks? I just worry what unseen damage is being done in the meantime.

With his blood test, he had nutrient levels checked and all were fine. His b12 was actually high. I am a bit confused as I thought celiacs were supposed to be malnourished - so why are his levels good?

The only signs I see on my son are behavioural ones, and I can't say for sure that these are caused by gluten. He is irritable and lethargic and just not terribly happy. I would love to see the end of those!

[rosetapper23]

That's a decision you'll have to make. Since his only symptoms are behavioral (possibly neurological), the endoscopy may end up being negative...and then the gastro may declare that he does NOT have celiac. This is, unfortunately, something that happens with gastros that have little experience with celiac. When bloodwork is positive for celiac (and your son's was a high positive), you can be assured that he does, in fact, have celiac. In such a case, I personally would not bother with the endoscopy, which is oftentimes negative in young children because not enough damage has occurred. That is a decision that only you can make, though. If you decide against the endoscopy because you'd like to start the guten-free diet immediately, you could tell the gastro that you would like to schedule an endoscopy after a year to see if the gluten-free diet is working. However, if the bloodwork indicates low numbers at that time, you may not even need the endoscopy at that point because your son is obviously doing a good job with following the diet. Some gastros insist on an endoscopy to make a diagnosis of celiac, but celiac experts like Dr. Alessio Fasano believe that endoscopies are not necessary for a diagnosis of celiac to be made.

I'm sure others will jump in--this is a subject where the opinions are all over the board. Only YOU can decide what is best for your son.

[Skysmom03]

My son did not have any symptoms either, but when the doctor did the biopsy he did notice damage. He estimated that my son's Celiac was triggered three years. One option could be to go gluten free for three weeks then go back on gluten three to four weeks before the endoscopy. This is what was suggested of me if we had been unable to get the date we needed.

[Takala]

Your son will be starting school soon. You can't imagine what it is like to have had the neurological problems of gluten intolerance, and be stuck in that situation trying to concentrate and focus, without the diagnosis because the stereotypical symptoms are only gut problems and weight loss. Gluten can cause brain damage and vision damage and loss of coordination. I have had all three, plus bone loss. I was frequently ill, very asthmatic. Oh, and by the time I had my adult teeth coming in, that was a disaster too, that I didn't have the money to get fixed until I was working as a young adult, and braces are no fun as an adult.

I think if I wasn't actually more highly athletic than the regular person, so this stuff put me down to low- average because of subtle, ongoing damage, before I changed my diet, my life would have been a train wreck.

You owe it to your kid to try to give him the best situation to make him able to withstand the rigors of having to deal with other kids, their germs, and teachers who may or may not be able to deal with his personality and fatigue issues..... and it's not "lethargy," nor laziness, and it's not crankiness, these are also symptoms of a gluten problem, and it's that we all tend to be a bit low functioning in the thyroid department, whether or not we test out that way. Even if he tests out negative on a biopsy, (which frequently happens with children) try to get him on a gluten free diet for several weeks and see how he does on it, and have him retested to see if his blood tests come out differently. You can also have a genetic test done to see if it is more probable that he could be celiac, but, there is also non-celiac gluten intolerance. Don't ignore a + blood test when there are also physical or behavioral issues.

[Cara in Boston]

My son had no symptoms at all except behavior. When he had his biopsy, they found extensive damage, which surprised all of us since his vitamin levels were fine, he was above average for size, etc. He never even complained of feeling bad - BECAUSE IT WAS NORMAL for him to feel bad. Once off gluten, we had a totally different kid. Fun to be around, wanting to try new things, full of energy, not frustrated by the slightest setback, he even happily did his homework. When I heard him singing while playing legos I felt so guilty. I hadn't noticed that the singing had stopped for several months . . . he must have just felt crappy every single day but didn't really realize it. Imagine feeling so bad that your personality changes.

I would be looking to start healing as soon as possible. If he tested positive for diabetes (or any other condition), would you wait to start treatment?

That being said, it did take us 4 months to get a diagnosis from the time of his first blood test to the time of his endoscopy results, and it sounds like even with your delay you would get an answer sooner.

I would not try the diet until testing was done. Everyone is different and a few weeks back on gluten may not be enough to get an accurate test. The tests are unreliable as it is, I wouldn't do anything that might change them further. And keep in mind that a negative biopsy only means that damage was not found. It does not mean damage is not there OR that you do not have celiac.

Cara

[Cara in Boston]

Just wanted to add, I was told that as long as the autoimmune reaction was going on, a person with celiac is more likely to develop additional autoimmune disorders - some that will not resolve once you start the diet. Once you stop the reaction (eliminate gluten from your diet) your chances of developing more issues are back to that of the general population.

[kb27]

I would stay on gluten until the biopsy, and then go gluten-free afterwards no matter what the results are. From my understanding, false positives on bloodwork are rare. If the biopsy is positive, then you can get a doctor's official diagnosis which can help in school/camp/college/etc. with accommodations. Six weeks isn't that long, and it will give you a chance to test out some gluten-free recipes without any pressure.

For what it's worth, my son had a positive blood test and then they found extensive damage in the biopsy. His only symptom was mild anemia that wouldn't go away with iron supplements. I credit our family doctor with noticing the low iron on a bloodtest, following up with it, and not stopping until we figured out what was up. I hadn't even heard of celiac when the hematologist called me to tell me his blood test was positive. It was a bit of a shock.

[Christine0125]

I would keep him on gluten and move forward with the biopsy in order to get the formal diagnosis. I made this decision with my daughter because my thought is that if treatment options become available in the future I wanted her diagnosed so she would be eligible. Our doctor indicated that a piece of bread of day was sufficient for the biopsy... i know they say to gluten load for the blood test but it's not as necessary for the biopsy. I would suggest starting to cut back now but have him eat a minimum amount each day.

[javic]

I would keep him on gluten and move forward with the biopsy in order to get the formal diagnosis. I made this decision with my daughter because my thought is that if treatment options become available in the future I wanted her diagnosed so she would be eligible. Our doctor indicated that a piece of bread of day was sufficient for the biopsy... i know they say to gluten load for the blood test but it's not as necessary for the biopsy. I would suggest starting to cut back now but have him eat a minimum amount each day.

Christine, thanks so much for your reply. The point about the treatment options really made sense. I emailed a man involved in the research for development of the celiac vaccine and he was so wonderful replying to me in great detail and offering further help. He brought up the point about the treatment options only being available to diagnosed celiacs. He also explained in detail how celiac is sometimes diagnosed without biopsy in select cases when there are a number of other things present but only if transglutaminase is very high. And this still is controversial and could result in incorrect diagnosis.

All in all, we will be going ahead with the biopsy.

[AGH2010]

That's very interesting about the vaccine. But requiring a formal diagnosis would keep people like my daughter from getting it. She's not yet 3 and her bloodwork came back positive. Her biopsy was negative. A celiac expert in San Diego told us that 2/3 of kids with positive blood work will develop celiac within 2 years if they keep eating gluten. She recommended we get my daughter on a strict gluten-free diet if we wanted to play it safe. So we did. I'd hope that a vaccine would still be available to those whose biopsies are negative but have had positive antibodies to gluten... In any event, how wonderful it would be if they could find an effective vaccine. An absolute dream come true!!

[Birdie19]

From a mother who has been in your shoes (recently too, May is when our daughter was diagnosed). My daughter had high TTGA and IGG, but not high enough for the jerk of an GI doctor we saw. He wanted me to wait a couple years to see if damage appeared in the intestines. I beat myself up over going gluten free for months. My daughter did have distention and bloating but the biggest change I have since going gluten-free was in her behavior. My daughter's body was the opposite of your child. she was totally and completely activated, ALL THE TIME! She was bouncing off the walls to which most of our friends wouldn't be around her, my husband and I refused to ask others to watch her because we felt so bad that her behavior was insane! SO MUCH ENERGY! We did biopsy her and it was negative. Looking back I wish I would not have done the biopsy. They are invasive, expensive and unnecessary. As someone said to me....."it's a diet, try it, if it doesn't work you can always go back". I completely understand wanting to know for sure if your child has celiac. However, looking back I would not do the biopsy again. It's completely unnecessary. What you are talking about is a diet, that's it (albeit an involved diet) but it's just a diet. You can do it and undo it if you are not happy with the results.

After we changed our diet, her behavior made a 3 fold improvement, she can focus, she can sit still for more than 10 minutes, etc.

The symptoms you describe with lethargy and all, that is my husband. He thinks he is not a celiac however since our family went gluten-free in May, he has tested several times eating wheat and he comes home from work and sleeps for 4 hours. He can't move, he is totally and completely exhausted. He did not have high labs, his were normal and he opted not to do the scope and he is still completely intolerant if not full blown celiac.

So I guess what I am getting at is, you can do all of these tests and still have no more answers than before you started the tests. The only way to know is to do the diet. Try it, keep a journal and see how it goes.

That's my opinion!

[rosetapper23]

I totally agree with Birdie19!

[CaveMum]

We had to wait 2 months between my 3 year old son's first positive blood test (which was highly elevated) and his first biopsy. The biopsy turned out to be inconclusive, much to the surprise of the gastroenterologists. They fully expected to see damage, but just didn't. Their next step for us was a follow up biopsy, some three months later. All this time, he has been on gluten (with the exception of 10 days after biopsy 1). I agree it is hard to keep them on gluten when you are just thinking of how much damage/suffering it could be causing, but I would say that for at least the first biopsy you must remain on gluten. A clear diagnosis of coeliac is much easier to deal with than an inconclusive one (and a follow up biopsy ..) If your child's symptoms are really affecting their quality of life, there should be a case for reducing the waiting time.

[LFitts]

A positive test is enough for a diagnosis and I would not recommend an invasive procedure for any child. I can tell you that preparing my 9 year old for a colonoscopy and endoscopy on her birthday was not my idea of fun and if we could have had a blood test before that, we would have. Her endoscopy showed a terrible amount of damage, with the whole small intestine inflamed. They ended up doing 30 biopsies from several places she was diagnosed with celiac. But the blood test should be enough on it's own. I wouldn't wait for damage, or eat bread until there's damage. If you know that he has it, go gluten free 100% today and never look back.

[javic]

We had to wait 2 months between my 3 year old son's first positive blood test (which was highly elevated) and his first biopsy. The biopsy turned out to be inconclusive, much to the surprise of the gastroenterologists. They fully expected to see damage, but just didn't. Their next step for us was a follow up biopsy, some three months later. All this time, he has been on gluten (with the exception of 10 days after biopsy 1). I agree it is hard to keep them on gluten when you are just thinking of how much damage/suffering it could be causing, but I would say that for at least the first biopsy you must remain on gluten. A clear diagnosis of coeliac is much easier to deal with than an inconclusive one (and a follow up biopsy ..) If your child's symptoms are really affecting their quality of life, there should be a case for reducing the waiting time.

Cave mum, i see you got a diagnosis for your son. I wonder why the first biopsy didn't show damage.

My son had his gastroscopy on the 10th. They said they did not see definite celiac and would have to wait for the biopsy results.

He had some bleeding at the biopsy sites and had to stay in for another 6 hours afterwards, was not allowed to eat until 1pm either - he must have been starving.

Then, some woman came along, said they needed more bloods and started jabbing him with needles. He was pinned down by 3 people while he screamed and wailed - until his gastro came by - a complete fluke of timing - and said "what are you doing? stop! I never allow that to be done to my children!" and the blood woman skulked off muttering that she was only doing what she was told. It was so freaking traumatic for me and him both. He has told me he never, ever wants to go back to hospital again. So, if they tell us his was inconclusive and they want to do it again, I will be devastated!