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BrandySimms

Endoscopy Or Not?

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Hi :)

I'm new and am not even sure whether or not my daughter has a gluten intolerance, but all signs point that way...so here I am.

My 13 month old has been having digestive issues (constipation) for about 6 months, pretty much right after she started table foods. The only thing that gets things moving is miralax. Her pediatrician (Dr. K) referred us to a gastroenterologist (Dr. A), who sent us for blood work (fun!). The results show (I haven't personally seen them, we've spoke over the phone) that the allergy panel is relatively normal, with very, very mild allergies to gluten and milk. However, she is IgA deficient, so I know that can show false negatives.

Dr.A wants to do an upper endoscopy to test for celiac, because he thinks that there is a good chance of her having it. We are not comfortable with this for our 13 month old. I suggested that we try a 100% gluten free diet and see if it makes a difference. I'm already eating a 70/30 gluten free diet as it is, for my own digestive concerns. I'm well aware of the commitment that it takes for a gluten-free diet and am willing to do that to help my baby. He told me not to go gluten-free if we are not doing the endoscopy. Also, if/when we decide to do the endoscopy we will have to reintroduce gluten to get accurate results, so we should just do it now. I understand his reasoning, but I don't agree with it.

Has anyone dealt with something similar? What was the ultimate outcome? Did a diet change alone prove that your child has a gluten intolerance?

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If you were talking about an adult then I likely would say just go gluten free. However your child will need to be safe in school or daycare and in most instances a diagnosis is needed to accomplish that. If either your ped or your GI doctor is willing to give a diagnosis based on her improvement on the diet then IMHO you could skip the endoscopy. If not then it is better to do it now while your child is still eating gluten. Many have nasty reactions to a gluten challenge after they have been gluten free for a while so a challenge may be difficult later on. While any procedure has risks most endos go smoothly and only require a short time under anesthesia. 

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I think the difference is if your doctor will give a clear diagnosis.  If you can get it written that your daughter has celiac then that's all you need for school - with or without an endoscopy.  If the doctor won't DX without scoping first then I'd go with that.

 

FWIW, I have three kids.  The youngest (18 months at the time) had the highest bloodwork and since she was so young we got a DX based on blood.  My older two had that weird mid-range bloodwork so they both had biopsies - one was DX, one wasn't, even though they both had negative biopsies.

 

I have a 504 plan for both my DX girls.  One in elementary and the other in our Early Childhood Center (both in our public school district).  I wouldn't have been given the gravity of accommodations without clear diagnoses for them.  Based on my situation, I wouldn't stop until you're sure of what's going on with her.

 

And, please, don't stop gluten until you're sure you're finished all her testing.  I know it's hurting her body, but getting to the bottom of this will help in the long run.

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And, please, don't stop gluten until you're sure you're finished all her testing.  I know it's hurting her body, but getting to the bottom of this will help in the long run.

 

 

THIS!!!  

 

Please keep her on gluten until you 100% figure out what you are going to do (scope or not).  We are in an area now where there are questions by some Dr's (while others there is no question- go figure!) and I would not wish it on anyone!  I completely understand not wanting to do the scope and if you are that much against it or prefer more information perhaps getting the genetic test (which is NOT diagnostic in any way- PLEASE understand that!  Just says there is the genetic potential for Celiac) perhaps if that is + you may be more willing to do the scope.

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Can you get a copy of the results? You wrote "allergy panel", but celiac is not an allergy. If the full celiac panel, including IgA and IgG antibodies, has not been run, that would be a less invasive next step than an endoscopy for your little one.

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Can you get a copy of the results? You wrote "allergy panel", but celiac is not an allergy. If the full celiac panel, including IgA and IgG antibodies, has not been run, that would be a less invasive next step than an endoscopy for your little one.

These are the IgA and IgG tears they ran. What exactly does this show? High probability of celiac or not?

Antigliadin Abs, IgA. 1

Antigliadin Abs, IgG. 2

t-Transglutaminase (tTG) IgA <2

t-Transglutaminase (tTG) IgG <2

Immunoglobulin A, Qn, Serum 5

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AImmunoglobulin A, Qn, Serum 5 (20-101)

RED FLAG! The total serum iGa is way below normal. The other tests may be false negatives due to this. She is not producing antibodies in the normal range overall, so the "low" gliadin numbers may not be meaningful. This could be age-related. Blood testing in very young children is notoriously unreliable.

As RavenWoodGlass said, having a confirmed diagnosis will be very important in enforcing her ADA 504 rights at day care, school, and in similar situations. I would do the endo if it was my child.

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Yes, that is what the dr is concerned about mainly. He sees low IgA levels a lot, but was more concerned because hers is VERY LOW. I'm still not sure what we are going to do. I'm on the fence and can understand the benefits of getting it done, but I'm also scared. My husband is 100% against it, though, and it's difficult to sway his decision. I think we will stick to a gluten diet (as much as it kills me to see her in pain) until we both can agree on something.

Thank you all for your input.

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I can understand having different thoughts on the procedure.  Perhaps asking DH why he's so against it when it may be the ONLY way to tell if there is an issue because of the IgA issues may help you get to the heart of it and help work through it (if you are thinking you want to do it).  My DH HATES hospitals.  Really hates them. Not fond of Dr's either.  Most times when it is a major decision we have to make walking away for a day or two then coming back together with thoughts and questions he has has been helpful for us.  

 

It's important to remember- This isn't a "diet" that you can go off of.  This is a LIFE LONG requirement.  Would he rather her not have the information to make that life long decision?  Seems easy enough now but what about high school, college and beyond.  Do you want to say "oh we thought we were right" or would you prefer to have "proof" to show her?  Just some things to think about.

 

Is a procedure for a kid fun for a parent? Nope.  Not even a little.  Does it help us make the best decisions we can for our kids at this point in time? It can.

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Luckily I was diagnosed through a scope and blood work so when my daughter came up positive on her blood work, she didn't have to have the endoscopy. If the doctor would have suggested it, I would have. It is invasive and there are risks, though they are very small, but it really is a necessity in your situation. If it was my child I wouldn't hesitate. Children are young and resilient and she won't even remember the whole situation. I wish you luck in what ever you decide and your daughter gets back to feeling well.

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Yes, that is what the dr is concerned about mainly. He sees low IgA levels a lot, but was more concerned because hers is VERY LOW. I'm still not sure what we are going to do. I'm on the fence and can understand the benefits of getting it done, but I'm also scared. My husband is 100% against it, though, and it's difficult to sway his decision. I think we will stick to a gluten diet (as much as it kills me to see her in pain) until we both can agree on something.

Thank you all for your input.

I understand not wanting to undergo an invasive procedure, but this one is necessary. We opted to forgo endoscopy with our seronegative teens as they were willing to go gluten-free on their own due to frustrations with symptoms. We cannot go back, but each of them along with their father and I would say....hell, yes! To endoscopy if we knew then what we know now. You can't replicate this moment in time.

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^Yes.

 

I'm putting my kids through a gluten challenge to finally end limbo land and if I had it to do over, I would've never tried to take them gluten free without a diagnosis.

 

I find it hard enough as an adult without a diagnosis, though I've been able to adapt over time, but for kids it's even more difficult and realistically it's very hard to enforce a 100% celiac diet for a kid, without medical directives. Thus, for many kids, lack of diagnosis could harm their harm in the long run. Even if the diet is helping your kid, there will always be that doubt of "do they have celiac or not?" and when there are doubts, there's the temptation to cut corners or be a little less careful about cross contamination, which will harm their health in the long run if celiac is the issue. (just speaking from personal experience here with my own kids)

 

I'm fortunate that my kids are able to tolerate the gluten challenge, so that I can end this and bring us to a permanent dietary decision for them.

 

However I wasn't able to tolerate the gluten challenge and so now I'm facing the fact that a diagnosis is forever closed to me...unless of course science comes up wtih a way to get one without taking the risk of brain damaging myself.

 

The best time to get a diagnosis is right now, while gluten is still in the diet.

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