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Worriedtodeath

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HI!

Just left the peds office this morning. My ped seems to be very up on Celiac and raised the question of it from the day symptoms appeared. We had our gi visit monday and today we discussed her thoughts on the biopsy he wants. For background, my 18 m presented around 10-12 months, it was caught at the 12 months visit. We eliminated everything but fruits/veggies and reintorudced food. When the problems came back, we went to an allergisit and ruled out ige allergies and went on 3 week food trials. When we came around to wheat the symptoms have come back and simply progressed to much much worse but this last week the movements have slowed to once a day though very very very mushy and liquidy. Now the Dr says we are "backed into a corner' since her weight is (she's gaining some ozs) falling further and further into the below the chart zone (probalby 1/3 or so below 0 on the 18 m line. We aren't sure the biospy will be worth it and worried why we should do it. The dr thought that based on her continuing suprise movents (you never know what you are going to get, how much, or how often), her contiunal decline and fall off of health, we should do the biopsy even though her feelings, the allergists feelings, and the ped gis feelings are that she is classic Celiac and positive or neg must be removed from wheat/gluten. Her answers to hae the biopsy haven't helped sway us.

Here they are:

1. We probably won't get a positive on the Celiac from it and it won't rule it out.

2. It will show if there is anything else that might be wrong that we haven't caught yet concerning the gi. That are some conditions of swelling of the esophagoues(SP!!!), inflammation, and "such" and Crohn's would be ruled out.

3. She must come off of wheat since it is either causing it or agravating whatever condition she might have if one shows up. (but not before the biopsy she''ll just have to continue to get worse until we can get a biopsy done)

4. We are at that point where we are getting into major nutrional issues, growth delays, brain development and such and while she doesn't feel that something else is wrong, she doesn't feel we can skip the biopsy just because removing her from wheat improved her and putting her back on made her much much worse. It could be something else that we just haven't thought of or looked at and she isn't comfortable saying it is 100% to blame on Celiac. She did say if her weight was on the chart instead of below it, she wouldn't worry if we didn't do the test.

5. If nothing else shows up and nothing else can be found, she will be removed off of wheat/gluten regardless and we will proceed as a NCGS person.

So there, given all that would you do a biopsy?? What other conditions have been discovered by the biospy?

Her Celiac panel was done by Prometheus and I cannot say 100% sure she was on wheat when she took it. I took her off of wheat and I believe it might have been before the test but not more than 1 week before.

Results were

aga igg 2.2 <10

aga iga .1 < 5.0

ttg iga .5 < 4.0

ema iga negative

total serum iga 18 <3years 8-220

Sorry so long!!

Stacie

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Stacie, your baby sounds very ill. Unless the biopsy can be done within a week, I wouldn't bother with it. Those blood tests are very unreliable in young children and don't necessarily mean much.

If it was my child, I would skip the biopsy and start a strict, 100% gluten-free diet immediately. At her age, the diet is the best test, not the blood work, and not the biopsy, either.

If there is no improvement on the diet, you can then decide to check for other problems. It doesn't sound like you have much time left to mess around with ideas, you don't want her to be deathly ill before you do what you know is the right thing to do.

Make sure you don't just remove wheat, but rye, oats and barley as well (and triticale, as it is a hybrid of wheat and rye).

There are some companies that produce guaranteed gluten-free oats, which might be okay for her. Some people with celiac disease can't tolerate any oats, because the oat protein is very much like gluten.

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HI!

Funnything is she doesn't look sick or ill. Other than circles under her eyes. She's the same as she was at her well check just skinnier. She has that big belly with skinny arms/legs and you can see every rib. She even managed to grow 1/2". My sibilings and I were like this. We grew, we were skinny skeletons, and we stayed in the bathroom. If I wasn't changing all those diapers, I would be hardpressed to believe something was wrong. I was told the diet wasn't enough to give her the diagnosis. Do you have some documentation that I could show the ped? She would be agreeable I believe not to do the biopsy if it could be shown that diet was enough for her age group.

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I would do the biopsy. Its easy to blame everything on Celiac/gluten, when she could have something else entirely, or could have a gluten + something else problem. I'd do it now and get all your bases covered.

She doesn't have to have a Celiac diagnosis. A true Celiac diagnosis is positive biopsy. But she can go gluten free without the consent of any doctor.

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This will come down to what you feel is best for your child and what makes sense to you. Babies and toddlers falling off growth charts/weight charts is a cause for great concern. If the GI and ped dont push for biopsy and its not celiac; or if it is celiac in combination with another malabsorbtion syndrome , then they would be guilty of malpractice.

There are a number of conditions that can present like celiac or in combination with celiac. Inborn errors of metabolism, bowel malformations, ..among others. I found some information in the past that lists various diseases that should be investigated by small bowel biopsy in young children. I cant find it at the moment.

I had both my children biopsied to confirm celiac.

The routes you can go :

Get biopsy done and go gluten free even if biopsy normal since you have seen response to gluten free. This way you have ruled out other disorders.

Wait and try diet...now you have to wait weeks /months to watch for weight gain and improvement. If she does not improve then you still need to do biopsy but have delayed it. You could see a transient improvment on gluten free , then more symptoms. This can happen as the bowel heals (if its celiac) OR it happnens because celiac is one condition she has, but may have another problem not yet diagnosed because biopsy not done.

Your child's doctors sound very throrough - and they want to make sure nothing is missed.

In the end though - this is your child, weigh the pros and cons, your "gut instinct", and advice.

I made the decision for biopsy based on my children and their co-existing medical conditions as well as discussion with my husband.

You will get advice both for and against biopsy. Both of them are valid...it comes down individual choice.

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My daughter is four now, and she was diagnosed by diet only, at age two. Even though she's thriving wonderfully now, and the diet has made all the difference in the world, I still wish I had done the biopsy, while her bowels were still looking damaged. It's too late now. And even when she's fully grown, we'd have to put her back on a wheat diet, make her really, really sick first, and then do a biopsy to confirm her diagnosis as a celiac.

I just wish I had done the biopsy at the very beginning. That's what I can tell you through my own experience: I regret not doing a biopsy back when she was actually sick. A biopsy would have been very affirming, and I just wish I had that. Maybe it's sounds silly. I should just be glad I've got a healthy kid. But I do wish I had done that biopsy.

Mechelle

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I would highly recommend getting the biopsy. It is the only conclusive method for determining celiac. This will mean continuing with gluten until the biopsy. My son had the biopsy at 26 months old and we are so glad we did it. It seemed dreadful at the time but now we know for sure what was wrong.

In the first year of his gluten free diet, he gained 10 pounds and grew 6.25 inches!

It is good to have a conclusive diagnosis - otherwise you could be limiting his diet when you do not need to. Also, if there is some other issue, they can find out while they are doing the biopsy.

Not sure where you located, but try to find a good doctor - keep searching if your gut instinct tells you the doctor is not good.

Good luck.

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THanks everyone!

We decided to go with it just in case it is something else. It's just with her so young, even the drs agree a positive will be hard to get. BUt even with out, she will still have to go without wheat. THat should do a lot of improvement but at least if we don't get a positive, the drs will feel that nothing has been overlooked and can proceed with the Celiac option.

Thanks

Stacie

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I would highly recommend getting the biopsy. It is the only conclusive method for determining celiac.

I'm sorry, I must disagree--this is simply not true. The biopsy has been considered the "gold standard" of diagnosis for decades--but that is only because of lack of knowledge.

The biopsy is not particularly accurate unless your villi are completely and uniformly damaged.

You have something like 22 feet of intestine, and the biopsy consists of 4-6 TINY (roughly 1/4" or even less, I'm told) samples. Villi damage is often patchy, and often visible ONLY under a microscope.

Let's see, 6 times 1/4 inch equals roughly an inch and a half--OUT OF 22 FEET OF INTESTINES. That's less than a .5% chance of hitting a damaged spot of villi. And this was considered the gold standard???? :ph34r:

Times are changing. Bloodwork plus dietary response are now being considered more accurate diagnostic tools than the biopsy, especially by doctors who have been reading the latest research, rather than relying on 30-year old knowledge.

I'm not saying that there is NEVER diagnostic value to a biopsy. But if bloodwork and dietary response are positive, and no other conditions besides celiac are suspected, then all a biopsy does is pad the doctor's bank account.

Another thing to consider is that if your child's health is not good at the time of biopsy, she is more likely to react badly to the anesthesia. The risks go up as the health goes down. Since in your child's case, dietary response seems fairly clear, if I were in your shoes (and I am a mom whose oldest child underwent necessary open-heart surgery at age 2), I would do everything NON-INVASIVE that I could before putting my child at any risk from a surgical procedure. If questions can be answered without risks, that is always the best path.

Anybody who says that the endoscopy/biopsy is perfectly safe and risk-free is either lying or ignorant. While "twilight" anesthesia is certainly less risky than full anesthesia, it is still possible to have a bad reaction to it and die on the table, especially for a child in very poor health.

TThe gluten-free diet is actually the easiest and safest option. If there is something more than celiac going on, you will know because the gluten-free diet won't be enough--there will still be problems.. But you must be very strict with the diet--no cheating!. That is still easier on both you and on your child than endoscopy/biopsy, and far safer.

But it means much less money for your doctor.

Many people get a lot of answers (not just about celiac) from Enterolab, which does fecal testing. I have not bothered with that, as my bloodwork was enough for me, but those that have all posted positive experiences with the lab, and were able to get a lot of info, including genetic information and other food intolerances. It is also even less invasive than bloodwork.

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I just wish I had done the biopsy at the very beginning. That's what I can tell you through my own experience: I regret not doing a biopsy back when she was actually sick. A biopsy would have been very affirming, and I just wish I had that. Maybe it's sounds silly. I should just be glad I've got a healthy kid. But I do wish I had done that biopsy.

Mechelle

Would you still wish you had done the biopsy if

#1) It didn't tell you anything you don't already know and

#2) Your daughter had a bad reaction to the anesthesia?

You have spared your daughter any harm from #2 by not having the biopsy done. And since there are apparently no other issues besides for gluten (you said the diet made all the difference in the world), you obviously would have learned nothing from the biopsy. Why on earth would you risk harming her for "affirmation?"

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My daughter had a biopsy at 26 months - it was scary - but i know that if i wouldnot have done it, i would have tried her on gluten every once in a while to check to see if she had outgrown it! that is my nature... Now with the diagnosis, i am VERY strict, but only coz i know hwat she has and it is confirmed!

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