2 1/2 Year Old - Upcoming Biopsy Questions

[texasmama]

My 2 1/2 year old daughter had a positive IgA and Ttg gluten panel with Enterolab and a malabsorption (fecal fat) score in the severe range. She has been gluten free for three months. Many of her issues have resolved but she still has very disturbed sleep at night, waking 2-8 times per night. She has been dairy free her entire life. She saw a pediatric GI yesterday who wants to do a scope and biopsy and a 24 hour probe to check for reflux. We are agreeing to the biopsy in order to rule out other disorders, including sllent reflux and the eosiniphilic disorders, which can cause permanent damage if not treated and are sometimes a differential diagnosis with celiac. We are not agreeing to the biopsy to confirm celiac.

However, not surprisingly, the doctor asked if I would consider putting her back on gluten in order to get a definitive celiac diagnosis. Since we are doing the biopsy anyway for other reasons, I am strongly considering it. The biopsy is April 24th. Will a month on gluten be enough to show a positive biopsy after being off gluten for three months? I feel sick at my stomach at the thought of putting her back on gluten but after much thought I think it is probably the best long term decision which will give her the most information in the future. I know this is a controversial decision. I just need to know how much gluten it will take and for how long she needs it in order for the biopsy to potentially show damage. I know biopsies are still not exact. Can anyone help me?

[gfgypsyqueen]

I can't tell you how much gluten is needed to see damage, but I would guess a significant amount at every meal for a few months. Since you only have one month, I would guess heavy gluten at every meal is your best bet to attempt to see damage in the biopsy. That being said, listen to the issues with my little one.

I have Celiacs. So I know the signs and when hers started at 9 mths I started saying this needs to be checked. Nope. The Dr wouldn't do it. Close to the one year check up the Dr was finally agreeing that the hunger, months of diarrhea, unexplained rashes, and the constantly dropping percentages on the growth chart needed to be checked for Celiacs. But we were moving so it couldn't be done by that Dr. In the new city the Drs flat out refused. They had to go through the whole process again, they saw her as petite. I saw her as eating non-stop, not sleeping well, diarrhea, rashes, not growing in an upward percentages on the charts. Finally I had to start fighting and demanding that they test her. We had a few months of that. Yes she was constantly ill and at the Dr office. It was not pretty, but she finally got the blood work and then the biopsy. That was her second birthday present - a biopsy. Huge production, very emotional for us, and in the end worthless. By this point she was falling off the growth charts. The biopsy was inconclusive. But luckily they did the gene test, which was positive. The Pediatric Gastro Dr actually yelled at me for making her gluten-free without his permission. She has also been dairy free for life. Always had problems with it. So we tried a month or so of 100% dairy free not a trace or anything. She still had some problems. Then against the wishes of all of her Drs, I made her gluten-free/CF. Within a week she had formed poop for the first time in her life. She started to sleep through the night. She was no longer starving. Her behavior improved tremendously. Things went away that I didn't even realize were Celiac related. Now it has been a little more than 6 mths gluten-free/CF. She has grown several inches, packed on the pounds, and went through two clothing sizes. She is still very small for her age. The pediatrician sees the changes and agrees that it works for her and that she has Celiacs. I do not have a Pediatric Gastro any longer.

Why did I wait so long? Because I wanted a solid diagnosis for her. So there would be no debatting later on that she is a Celiac or is not a Celiac. I still don't have that.

She had over a year of daily gluten and a sick body that was not growing and she was getting worse by the day. Even with all that, they still did not find any damage on her Celiac biopsy panels.

So in my opinion only, I understand why you may want the biopsy and the difinative answer of yes it is Celiacs. But I think with kids this young it is so hard to get that 100% accurate biopsy that it is Celiacs. However, I do agree with having the scope to look for the other diseases and rule out the other issues. When it comes to Celaics and a young child that is already gluten-free, I don't think one month is enough time and even with enough time they still might not get the damaged piece in their biopsy slides.

Best of luck with your decisions and the upcoming biopsies. I just wanted to tell you our story.

[gfpaperdoll]

You could also give her dairy & soy with the gluten that should help the villi get damaged better and quicker.

[Worriedtodeath]

We did gluten at every meal and every snack for 96 days. Didn't do a thing for us but give me permament stains in the carpet, her clothes and a very very very sick little girl. 9 weeks gluten free against the drs wishes since her test shows gluten is not her problem, she has had the best height and weight growth in over a year. Her ped says the proof is in the pudding regardless of what the test says. SHe isn't sleeping thru the night either and it may just take a long while to retrain. I don't know. I would do the biopsy because our ped was relieved that there was nothing else that we could find wrong with her. So the ped doesn't feel that we are missing a problem or masking a problem by relieving it with a gluten free diet. There is no question from the ped that gluten/wheat is THE problem. We have discovered that soy and dairy cause tummy aches and we have eliminated those and it has helped with sleeping thru the night. I fully understand the thought of filling her up with gluten( we tried!) to show enough damage for the test but I really don't believe that will happen unless the child is at death's door and in the hospital fighting for life. My ped even told me last week that she sees tons of kids that those biopsies come back negative on and she feels so sure they are Celiac but they don't have any damage. I'm one of the few that removed gluten and one of the few with a daughter getting better.

I wish we had definite dx. It would make things easier since without it I'm being pressured to "retry" gluten in a few months by everyone including the drs. I wish it was possible but at this young age, I'm not sure it is without taking the child to the brink. My daughter is responding but she is not better yet and we can only hope the damage caused by gluten will diminsh over time. Hopefully she will bounce back and be right on track but I have no gurantee that she will. She still gets sick at the drop of a hat and can't fight off any germs at all. CC is a huge issue and can cause a week of misery.

Wish I had a better answer for you. Hopefully they will come up with a better way to test these little ones instead of using adult standards on them.

Stacie

[AMQmom]

I am sorry to say that I am not in the position to advise you on how much gluten to add back to your child's diet. What I would like to share with you, though, is the experience that I had with my two year old (who turned three during her biopsy week). She was not eating much at all and completely malnurished. Granted, I did not have to take gluten out of her diet because we had no idea before her scope, but we had a positive experience with the procedure. I explained to her that they were going to put a mask on her face and made noises to get her acquainted with the idea. I made fun conversation about it. She went in there and was fine. We did get results and I feel that it was worth it. I absolutely hate the idea of re-introducing gluten because it makes kids miserable, but I totally understand the reasoning behind it. I am in a similar situation to you right now because my almost 7 year old tested positive for Celiac via bloodwork and I am keeping her on gluten until her scope in a couple of weeks. I hope that you and your child do not experience too much discomfort and I also hope that your receive the information that you are seeking. I know from Celiacs that I have spoken to, just a little gluten makes them uncomfortable. Did you doctor give you any advice as to how much? If you would like, I can ask our pediatric GI - he has a passion for Celiacs!!!

[Ursa Major]

Children's villi heal faster than adults. After three months gluten-free it could take more than a year of eating lots of gluten before she MIGHT have destroyed villi again to be able to get a positive biopsy, even though it is still unlikely. One month on gluten will be way too little time.

If you give your child gluten again you will just make her ill again, for no good reason at all. I can see the reasoning behind looking for things other than celiac disease with a biopsy. But you don't need to put her through the torture of feeding her gluten again for that.

If I could make the decision, I would keep her gluten-free and dairy free, take soy out of her diet as well (if she is getting any) and do the endoscopy to look for other problems if eliminating soy won't help.

She could also have other intolerances. Two of my grandchildren are intolerant to nightshade foods (potatoes, tomatoes, pepper, eggplant) as well as gluten, dairy and soy. Corn is a common allergen as well, as are many other things.

I can see somebody keeping a child on gluten for a VERY limited time after positive blood work for a biopsy, if you haven't started the gluten-free diet yet. But I can never see a good reason to put a child back on gluten for a biopsy. If an adult decides to do that to him/herself, that is their decision (a poor one in my opinion, but not my business, of course). But to make the decision to purposely make a little child possibly deathly ill again, maybe even triggering other autoimmune diseases in the process or causing irreversible damage is not what I would ever do.

[texasmama]

AMQmom, Worriedtodeath and gfgypsyqueen - thank you for sharing your stories. It helps me to make a better decision for my daughter.

Ursa Major - you make very good points and I appreciate your feedback. Lauren eats only incidental soy (some soybean oil and soy lecithin) but I can consider getting rid of that, as well. It also helps me make a better decision for my daughter.

gfpaperdoll - Your statement struck me as snarky and was not helpful in making this decision. I am very new to the celiac world and very much feeling my way through the process. This is something I take very seriously but it is hard to make an educated decision if you have not weighed ALL alternatives, even the less desirable ones.

Here is what I did: I gave Lauren gluten for 24 hours and saw a return of reflux symptoms so I will not be giving it to her again. The biopsy will show whatever it shows without her on gluten and hopefully the scope/biopsy will rule in or out other serious issues. I hope it is silent reflux or something simple to treat rather than one of the eosiniphilic disorders, which are difficult to treat and very damaging. There is something besides celiac going on with my daughter and we need to find out what it is. She and the entire family is suffering due to the tremendous lack of sleep. My own health issues are made worse by not having slept more than a few hours in a row for 2 1/2 years.

[gfgypsyqueen]

It is really hard dealing with a sick baby or toddler. It is only harder on you when is simple diagnosis is just not available. I hear ya on the lack of sleep My little Silly never slept more than a few hours before going gluten-free/CF. She still has somethign bothering her and we are workign on determining what it is, but overall she is so much better. We are all better now that everyone gets some sleep! Hopefully your little one will start feeling better soon and hopefully the biopsy will not be positive for any of those hard diseases you were mentioning.

Keep asking questions on this site. There is a huge wealth of knowledge here. Good luck on the testing.

PM if you need some food or snack ideas or anything.

[fedora]

It is unclear to me, Is your daughter having more issues than just not sleeping well. Please realize that 3 months really is not that long. she may still be recovering. I really respect a mother's intuition, if you feel something else is wrong, it very well may be. But she could still be recovering. I hope nothing else is wrong with her and she will continue to improve over time.

I got terrible sleep for years, so I understand. I had twins who didn't sleep for more than 1.5 hours at a time for the first year and a half. My son had a sensitive belly. After that we dealt with nightmares and bedwetting. ugh. of course now I suspect gluten-they both show symptoms at this point.

good luck...

[jaime1103]

Hi there,

I am sorry you are going through this... it is tough! I was diagnosed by my PCP in December 2007 based on positive celiac blood panel, low blood vitamin levels, and slight scalloping noticed during endoscopy a year prior. I went gluten free for 2.5 months, and PCP referred me back to GI Dr for follow up - he told me tTg was not run, and he felt that a true positive biopsy result was needed, so he requested that I eat gluten or "gluten challenge" for 4 weeks, re-do all bloodwork, and have the endo for the biopsy.... I really questioned this, as I had been gluten-free for 2.5 months, but I felt like it was important for me to have the best results possible, I have a 3 year old and 1 year old and the results would be invaluable for their future. So, I did eat gluten (a lot of it) for 5 weeks, felt really sick, nausea, belly pain, hand cramps, some vomiting, but I made it through, and all of the tests were 100% positive, the blood panels, the endo results showed severe scalloping, mosaic patterns, etc, a lot of damage. I have been back to the gluten-free diet for over a week, felt almost immediately better and I am really happy I know for sure.

My son's IgA came out high, so we are having he and my daughter eat a ton of gluten for 4 weeks, and we have to do the bloodwork, and if that comes out high, the biopsy... it is so tough, but they are so young, I feel like I really need to know what is going on. My son, almost 2, has severe reflux, as well, so I hope this gives us answers.

I hope this helps... good luck with your decision! I know when I posted a question about it I got so many conflicting opinions, but it is really your decision in the end.

Jaime

[ryebaby0]

I think you are doing a nice job sorting through the issues. Remember that a positive biopsy is definitively "yes", but a negative biopsy is not definitively "no" so you could conceivably have a month of gluten misery and still no pathological signs of celiac disease, just clinical. Especially at such a young age (which is notorious for false negative by biopsy), a dietary change is more conclusive. A biopsy relies on so much damage that it can't be missed, but that's a lot of damage. They are taking micro bits from 30+ feet of winding intestine!

Your mommy radar is always a good place to start. If it says no gluten, then stick with that idea. My son did not get better on a gluten-free diet, and it did turn out he had additional issues, and your child may have more going on. Doctors increasingly don't rely on re-introducing gluten, so it's not out-of-bounds for you to say you aren't comfortable doing that, and will rely on the dietary/clinical evidence of celiac for now.

[texasmama]

Thank you all again for the support and feedback. Lauren's sleep is so very disturbed that I really believe that something else is going on with her. It is not getting any better, either - if anything, it is getting worse. Except for our 24 hours experiment back on gluten, she is absolutely gluten free. I watch everything she eats like a hawk and have convinced the church nursery to stop serving goldfish in her class and instead use Envirokidz gluten-free cereals so she won't accidentally get a goldfish someone else dropped. We don't eat out and we stick to brands which are known gluten-free and not known for cc. I really feel that we have a good idea of how she is off gluten now. Most of her symptoms are much better or gone...but the night waking and restlessness continues. She was up about 8 times last night and had a couple of time periods when she just wouldn't settle.

Eosinophilic disorders are on my "radar" because my best friend's daughter has one and her main symptoms were reflux and night waking. She is now 100% on an elemental formula diet with no foods at all. Hopefully foods can be reintroduced with success later. It is a devastating disease if not treated and I don't want to miss something like that.

[okgrace]

Your daughter sounds very much like mine. I didn't sleep more than 15-20 minutes at a time for most of the night for about a year. Then we took her to the naturopath and got things straightened out for a bit. We took her off all grains and reintroduced food, plus she was taking a sleeping tincture. Things were ok for a bit but when she was about 2 she started waking up again. Of course we had reintroduced grains, but I had just finished my degree and was working so I thought this new disturbance in her life was keeping her up. Things slowly got worse with the sleep and then her behavior. Last summer she was 31/2 and she was up approx 6 times a night. We went back to the naturopath and things have improved significantly with removal of wheat and a sleeping tincure. I think in some instances kids get so used to waking up, it's difficult for them to reset their clocks. I know that I have been woken up so much for so many years it has taken me a while to be able to sleep throught the night.

Good Luck figuring things out, I understand how difficult and disruptive it is to one's life when they aren't sleeping. Your mother's intuition is probably the best thing you can follow.