Struggling With Whether Or Not To Have My Child Scoped For Diagnosis

MomInTucson · February 12, 2008

Hi,

My daughter is 6 and has been having stomach problems since Sept. I have taken her to a pediatric gastro doc who did and x-ray and h-pylori test. I gave all of the symptoms severe stomach pains, loose stools, sometimes constipated too, gassy, irritable & moody, canker sores in mouth, losing some weight. It's totally debilitating and all my daughter wants to do is crawl into her bed and curl up. The doctor said the next step is an endoscope and my husband and I aren't comfortable with such an invasive procedure.

I have tried changing her diet in several ways by eliminating dairy for weeks, then curbing fat intake and acids because she has heartburn too, cutting out fried foods and heavy breads and cookies. None of that worked. I put my daughter on a gluten free diet and even though it's only been a week, so far it's good.

My dilema is that I've been trying to avoid having endoscope procedure. After reading all about Celiac disease on the internet I'm wondering if I should have it done for her. The problem is that I've started the gluten free diet and I don't want to take her off. How long does it take for the small intestine to heal? Would the test be accurate? What if it's something other than Celiac and worse? I'm really struggling with what to do. Any advice is welcome.

Thank you!

February 12, 2008

Personally I don't see an endoscopy as seriously invasive(versus say surgery ect). It is still scary to think of your child goign through it. I didn't feel any pain or remember any of it afterward!

This is a personal choice. It comes down to wether or not you want that firm dx from a DR. Some people are ok with dietary response, other want the dr. I chose the dr.

Good luck with you child, I hope you find answers and she feels better soon!

happygirl · February 12, 2008

If you choose to get the endoscopy, she needs to be eating gluten.

Also, the endoscopy looks for other things besides Celiac. She may not have celiac, may have something other than celiac, or have celiac and something else. Its always better to know.

You may want to run the Celiac bloodwork also:

AGA IgG

AGA IgA

EMA IgA

tTG IgA

Total IgA

I wouldn't consider the endo. an seriously invasive. Its probably done in 10 minutes? Generally, its quick and easy. I've had three, and for me, it was always well worth it to have it done.

If you are considering this route, talk to your endo immediately so that you can get the procedure scheduled as soon as you can. Its a lot easier to eat gluten now then have issues with the diagnosis later, and need to 're-test'/challenge gluten. If she has Celiac, it may be better to know definitively now, rather than later.

Of course, you can choose not to have the procedure, but you will probably be met with much resistance from doctors (not just now, but later on). Many of those without positive biopsies have faced doctors who don't take their gluten problem seriously, or only focus on "challenging" gluten.

tom · February 12, 2008

My niece was 7 when she had her endoscopy. Barely a bother at all is what I've heard.

P.S. I went to UA, so helloooooooooo Tucson!!

jayhawkmom · February 12, 2008

My 6 year old just had her 2nd scope last Friday. Honestly... it's not very invasive at all. Since my daughter has numerous food allergies, she had it done in a pediatric OR at a children's hospital. However, under normal circumstances, it's a procedure that is so simple and routine that it's often done in a GI office.

Granted, it's really scary to have to sedate a child, I totally agree with that. My little one has a great deal of trouble with anesthsia... not "serious" troubles, but she cries endlessly when she's coming out of it. The good thing is... she's given Versed, and once she falls back asleep (after waking up from the procedure) she remembers NOTHING at all.

We had to have it done a second time because she's having further difficulties with malabsorption and we just can't figure out why. The doctors are trying to rule out other possible issues.

We certainly didn't agree to it without much thought. But, we can't help her if we don't know what's wrong. And, that's the bottom line.

ravenwoodglass · February 12, 2008

First this is only my personal opinion, I would go with the dietary results. Biopsies are hit and miss, especially in young children and they also have a high rate of false negatives in blood testing. The true test is how she responds to the diet. If you feel you need to have a doctors official diagnosis then you may feel you need to have this done, it is your choice but after all the procedures are done please get her back on the diet regardless of the results. Another doctor route you could go for diagnosis is with an allergist who will guide you through an elimination diet, those are hard to find though most are only interested in true allergies.

If you do go the gluten challenge route be aware that she may become quite ill a couple days after you start add gluten back in. Talk to your GI about this before you start the challenge. Some will stop the gluten load and diagnose if the person becomes extremely ill once gluten is added back in.

Fiddle-Faddle · February 12, 2008

My 6 year old just had her 2nd scope last Friday. Honestly... it's not very invasive at all.

I disagree.

My vocal chords were permanently damaged by the scope.

The sedation, while not as big a deal as, say, being completely knocked out, is still a big enough deal that a tiny percentage of children have died from it. Death IS a risk--and you will be asked to sign papers saying that you are aware of this immediately before the procedure, but they won't TELL you that it is a risk. My son's heart surgeon wouldn't even tell me that there was a risk of his dying during open-heart surgery, and I was bombarding him about questions about risks.

If they tell you, they then worry that you will cancel. So they don't tell you.

There was a case in the news here last year where an 8-year-old child died from the IV sedation while having tubes put in his ears.

And what do you think happened to Kanye West's mother? Plastic surgery isn't considered particularly invasive, either.

In ANY procedure, the anesthesia is usually considered to be the biggest risk. The younger the patient, the bigger the risk.

It's easy to say that it's no big deal if your child does fine.

ravenwoodglass · February 12, 2008

In ANY procedure, the anesthesia is usually considered to be the biggest risk. The younger the patient, the bigger the risk.

It's easy to say that it's no big deal if your child does fine.

I do agree heartedly with this. Also there can be unexpected effects from the sedation, some of those being really dangerous or just really unpleasent. I am not going to go into details but I had a very tough time during and recoving from a 'routine' endo and colonoscopy due to unexpected side effects with the anesthesia.

If you do decide to do an endo I can not stress strongly enough that you need to make sure they have an actual anesthesiologist in the room administering the drugs. Make sure they don't just have one in the building. It is becoming more common for these procedures to be done with the anesthesia being give by the GI. They are not always great at knowing when there is a problem and you really are quite helpless if things go wrong. An actual anesthesiologist would have saved me from a lot of pain and trauma.

kbtoyssni · February 12, 2008

My biggest question for you is: what if the scope comes back negative? This is a very real possibility because your daughter is still young and hasn't had much time to damage her intestines and she's been gluten-free for a week now. Will you keep her gluten-free? If so, there's probably no reason to have a scope. It seems like you've seen some positive dietary response which is a valid diagnosis.

So, pros and cons of "official" medical diagnosis.

Pros: Can make it easier once she gets to school to get 504 plans, etc, if a doctor's note is required. Doctors who are more knowledgeable on celiac may write you this note based on dietary response.

Some people need this type of proof to commit to a gluten-free diet. Some people have families who are very skeptical and need this type of proof.

It can check for other intestinal issues. You may want to ask your doc if he is looking for anything in addition to celiac.

Cons: It's invasive. Certainly not as invasive as many medical procedures, but it does carry some risk.

It's not necessary if you plan to keep her gluten-free based on dietary response.

It costs money.

False negatives are common, especially in children.

An official celiac diagnosis on a medical record can cause problems with health insurance (especially private insurance) years down the road.

Worriedtodeath · February 12, 2008

We did the scope on our 19 month and while it turned out fine and was easy and a breeze none the less, she could have had serious side effects or could have died. And the scope proved nothing but there was nothing wrong with her but a lactase deficiency. So if we follow our gi's advise, we will feed our child wheat and remove dairy from her diet. We tried his way and she was horribly sick within days and remained that way until I said enough and took her back off of gluten. So it did nothing for us but muddy the waters even more and cause all the drs to disagree how to treat her. IF you all ready have a response and everything is fine without gluten, do you need the test? IF problems occur later on gluten-free diet then you could do a scope then to see what else is wrong in addition to her need to be on a gluten-free diet.

Thanks

Stacie

MomInTucson · February 13, 2008

I want to thank everyone that has taken the time to listen and provide feedback. I greatly appreciate it and all of your advice is helpful!!

livcakes · February 14, 2008

Hi,

My daughter is 6 and has been having stomach problems since Sept. I have taken her to a pediatric gastro doc who did and x-ray and h-pylori test. I gave all of the symptoms severe stomach pains, loose stools, sometimes constipated too, gassy, irritable & moody, canker sores in mouth, losing some weight. It's totally debilitating and all my daughter wants to do is crawl into her bed and curl up. The doctor said the next step is an endoscope and my husband and I aren't comfortable with such an invasive procedure.
I have tried changing her diet in several ways by eliminating dairy for weeks, then curbing fat intake and acids because she has heartburn too, cutting out fried foods and heavy breads and cookies. None of that worked. I put my daughter on a gluten free diet and even though it's only been a week, so far it's good.
My dilema is that I've been trying to avoid having endoscope procedure. After reading all about Celiac disease on the internet I'm wondering if I should have it done for her. The problem is that I've started the gluten free diet and I don't want to take her off. How long does it take for the small intestine to heal? Would the test be accurate? What if it's something other than Celiac and worse? I'm really struggling with what to do. Any advice is welcome.
Thank you!

Hi, I also have a child that is 6 and she has had stomach problems since she was a baby. Every test has come back negative. Her symptoms are pain in her stomach, constant stomach aches, constipation or diarrhea, if she has milk she develops a rash and then croupe, sneezing with so much mucous, upset stomach then it turns into a fever....a cycle I have watched happen over and over. She was tested for milk allergy and every grass, wheat, etc....still negative results. Her gluten blood test was negative also.

I finally did a saliva test and the gluten came up borderline....they told me a borderline result in most cases can mean a positive result for celiac. I have put my daughter on a gluten free diet for the last two weeks and she is actually finally having good days, I was almost in tears because I have been unable to find any relief for her when she has a stomach attack. I am just relieved that this diet is working but also not sure if she has celiac. I would definitely want the diagnosis even if it is a nasty test. This gluten free diet is a lifelong commitment, it's huge.... and I will be asking my child to give up alot, it changes everything for her regarding school parties, birthday parties at friends houses....she will not be able to partake in just about everything served at any given party. I have been struggling with her for so long....finally something is working and I don't dare quit the diet.....I'm just holding my breath each day we get through without pain....it is such a relief. I will want to know for sure.