Endoscopy - What To Expect

[Anya]

we have a 20 month old baby girl who was recently diagnosed with the celiac gene. she has had recurring c.diff infections for the past 8 months and is very low weight (1%). the celiac could be the underlying cause for the c.diff infections. we need to make a decision on whether we take her through an endoscopy and colonoscopy. i have 2 concerns: a) i have her on a low gluten diet, could this impact the results? what type of impact will the procedure have on the baby, we are already having lots of feeding issues, could this potentially make it worse?

[mushroom]

we have a 20 month old baby girl who was recently diagnosed with the celiac gene. she has had recurring c.diff infections for the past 8 months and is very low weight (1%). the celiac could be the underlying cause for the c.diff infections. we need to make a decision on whether we take her through an endoscopy and colonoscopy. i have 2 concerns: a) i have her on a low gluten diet, could this impact the results? what type of impact will the procedure have on the baby, we are already having lots of feeding issues, could this potentially make it worse?

Hi, and welcome to the forum.

I assume that your daughter has had the celiac blood tests and that they were negative. And if you have had her on a low gluten diet this would make sense (totally apart from the fact that infants are difficult to accurately diagnose anyway, as I am sure you doctor has told you). Yes, c.diff infections do tend to run with celiac disease. Probably a third of the posters on this forum have had problems with c.diff, including me.

You do have a difficult decision to make, because the endoscopy in an infant has a high chance of being negative for celiac also. But if your doc is looking for other things?? then the two procedures done at the same time ( under anesthesia so your child will not remember them and should not suffer any long-term effects, although there is always a risk with anesthesia) then the two scopes could be revealing or rule out anything else. I do not believe that the two procedures will have any effects on her ability (or inability) to digest and absorb nutrients. Normally the only residual is a slight sore throat for a day or two. While I know you hate to subject your baby to an invasive procedure, it is minimally invasive and could be helpful. Have you noticed any difference with the low gluten diet - maybe not with recurrent c.diff?? It is a difficult decision.

You know, of course, that the gene is not diagnostic of celiac, merely predisposing, and it normally takes a trigger for celiac to develop. Do either you or your husband have any of the symptoms of celiac disease? And have you had the genetic testing? Sometimes each parent carries one of the celiac genes and the child ends up with both and has celiac disease right off the bat. But at least one of you does carry a celiac gene which she has inherited and you should both be tested.

I know I have probably posed more questions than I have answered, but they are significant questions in your decision-making.

[Anya]

Thank you for the detailed response. Yes, we had the blood test done and it was negative, but her igA values are borderline abnormal. I have definitely symptoms of celiac. My symptoms were not just GI related, but I was severely dizzy to the point of having vertigo. I went gluten free and casein free and all symptoms resolved. After 6 months of feeling good I introduced again small amounts of gluten and it seemed to work for me. So, if I am an active celiac, does that put my daughter at higher risk for developing it? Our pediatrician explained that she inherited the gene only from one of us. I am sure she got it from me, given my family history of auto-immune disease.

It is good to know that Celiac is tough to diagnose in infants. After 8 months of recurring c.diff infections, I just want her to be well and not make her more sick by increasing the gluten. She has been off the antibiotics for 5 weeks now, she seems to be finally able to fight it. I am not sure if the low gluten diet has made a difference or if she has finally been able to develop an immune response to the bug. We will try a no-gluten diet now and see if we get complete resolution and she starts to grow.

[mushroom]

For the endoscopy testing to be accurate she needs to be eating a full gluten diet for several weeks; it is so amazing to most of us that so many doctors do not know this. They subject people/infants to these procedures when the chances of finding damage are low. As soon as you withdraw gluten from the diet healing begins to take place, and depending on how long your child has been gluten free and how well she responds to the withdrawal of gluten it is entirely possible that the test will be negative. It is normally recommended that a full gluten diet be followed for 6 to 8 weeks for accurate testing. Again, I know I am throwing mud in your waters and I wish it were not so. But I do feel that if you were to put her back on gluten you would risk recurrence of the c.diff. Are you giving her any probiotics to help repopulate her gut with good flora/bacteria to aid her digestion? Is she able to tolerate yogurt which would help this process or is she lactose intolerant?

If I were you with such a tender wee babe, I believe I would just keep her gluten free, try to promote healing, and if she needs a diagnosis further down the line do a gluten challenge. At this point the important thing is that she grow and thrive and develop normally, not that she have some label thrust upon her. Obviously, if gluten free and curing c.diff does not help you would have to consider other options, but for now, get her well is my best advice.

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[lsmly9]

Has the doctor suggested the drink test yet? Usually that occurs before an endoscopy, though I am unsure whether or not this is suitable for infants? It's nothing more than a special liquid that allows the doctor to see while taking x-rays of the internal organs. I'd assume this would be less intrusive and safer than an endoscopy or colonoscopy. The only difference is the inability to see in color, where different shades of pink, red or white determine long term damage (in an endoscopy) which I wouldn't think would be necessary for an infant.

[Anya]

Thank you for the great advice. We are strongly leaning towards postponing the procedure and trying the gluten free diet. Yes, I have been giving her high dose probiotics for many months. I do not give her any dairy. I tried yoghurt and kefir in the past and she refused. We have been seen by a very reputable institution and reputable doctor and they did only the celiac blood panel, although she had borderline abnormal igA values. They wanted to treat with IVIG! I did not feel comfortable with IVIG and inquired about fecal transplant, which has been performed only twice so far in children. This would have been our last resort treatment.

Then I read that the IgA values can negatively impact the celiac blood test and pushed for genetic testing, which revealed that she has the gene. We are now going to find a GI who specializes in celiac.

[mushroom]

That sounds like a good plan