Opinions Please

[Genna'smom]

Help please. I really do not know what to think about my daughter.... My GI Dr is confusing me so much that I do not know what to do next.

Genna is 3 and weighs 26 lbs. We have worked very hard in the last year to get her here based on a gluten free diet - BUT he still is not sure she has it as she did have blood work and it said negative but did a biopcy and it showed early warning stages. She has been on a feedin tube for a year and doign gluten free. We have seen some weight gain but still behind even when she is getting enough calories. My question for you all is this: How can I be sure she has it - she really does and did not have any major symptoms that made htis stick out to anyone. The GI told me not to worry about cross contamination as she does not have it that bad - also in the alst few weeks I have caught her with things ( a pretzel she took from a friend, a chicken nugget) and she has had no reaction to these things. As a mom I do not want to do anything to hurt her so that is why I am looking for some help here. Also the GI says we do not want to do a gluten challenge until she is at least 4 and more stable in her weight and eating because he does not want to see us where we were last year with her not eating or drinking at all...

Thanks for any opnions and support you may all have to offer me!!

[ptkds]

First of all, you do have to be careful of cross contamination. Think of it as this: Gluten is poison to Celiacs; therefore even a trace amount of gluten will make her sick. You wouldn't ingest something that was cross contaminated with some poisonous pesticide would you? The GI was wrong to tell you that cross contamination isn't an issue.

Your child does have symptoms. She isn't gaining weight. If you haven't been careful about CC, then your dd has never been comletely gluten-free. That means she wont have explosive symptoms.

My youngest never had positive blood work and her biopsy was inconclusive. But she did have stomach ulcers (at 14 months old), which her GI said was caused by gluten. She now has obvious symptoms when glutened after being gluten-free for 2.5 yrs. She never had obvious symptoms except for being small. My 8 yr old never had symptoms except for being small (she was still on the growth chart though), and now she has HORRIBLE symptoms when she eats gluten.

Listen to your gut. If your mom instinct is telling you that gluten is the problem, then listen to it.

[shayesmom]

The GI told me not to worry about cross contamination as she does not have it that bad - also in the alst few weeks I have caught her with things ( a pretzel she took from a friend, a chicken nugget) and she has had no reaction to these things. As a mom I do not want to do anything to hurt her so that is why I am looking for some help here. Also the GI says we do not want to do a gluten challenge until she is at least 4 and more stable in her weight and eating because he does not want to see us where we were last year with her not eating or drinking at all...

Thanks for any opnions and support you may all have to offer me!!

It appears that the GI is a bit confused as to the nature of Celiac Disease. If your daughter tested positive via biopsy, then she has the disease. And ALL gluten must be avoided, included cross-contamination. The statement that "she doesn't have it that bad" is perpetuating the myth that a little bit won't hurt. The fact that your daughter isn't gaining weight and is still having problems is an indicator that a little bit is hurting. She needs to be completely gluten-free to determine if gluten is the only problem....and from there, you can reassess to see if other foods are problematic as well.

Reactions to gluten vary widely. Your daughter may not show any overt physical symptoms to exposures (besides poor weight gain). Another child may have completely different symptoms including abdominal pain, vomitting and diarrhea. The point being...it doesn't matter. Both require the same vigilance in the diet for their health. I'm not sure exactly what the GI's intent is. Keep the damage and symptoms to a minimum....or heal the damage completely so there are no more symptoms? In order to heal completely, gluten must be eliminated completely. From what I've read, 1/8th of a wheat thin cracker damages the intestine to the point where it would take 6 weeks to heal. So a pretzel or chicken nugget would set the healing process back quite a bit.

I agree with the pp. Gluten needs to be viewed as poison. There really is no acceptable amount to feed a child. Hope this helps.

[Genna'smom]

Thanks all.... I am going to try this week to get everything out of the house that is even cross contaminated........ and start over and see how she does.

[OptimisticMom42]

Hello,

I just wanted to add that your dr. is wrong! After going gluten free, every celiac I have spoken with has told me that they reacted more strongly to smaller amounts of gluten than before it was taken from thier system. Before going gluten free I would react to a plate of pasta. Now I react to tiny amounts of gluten in the "natural flavor".

You could be doing as much damage with CC now as a sandwich did before going gluten free.

I know this is harsh but half measures aren't going to work.

OptimisticMom42

[LDJofDenver]

Help please. I really do not know what to think about my daughter.... My GI Dr is confusing me so much that I do not know what to do next.

Genna is 3 and weighs 26 lbs. We have worked very hard in the last year to get her here based on a gluten free diet - BUT he still is not sure she has it as she did have blood work and it said negative but did a biopcy and it showed early warning stages. She has been on a feedin tube for a year and doign gluten free. We have seen some weight gain but still behind even when she is getting enough calories. My question for you all is this: How can I be sure she has it - she really does and did not have any major symptoms that made htis stick out to anyone. The GI told me not to worry about cross contamination as she does not have it that bad - also in the alst few weeks I have caught her with things ( a pretzel she took from a friend, a chicken nugget) and she has had no reaction to these things. As a mom I do not want to do anything to hurt her so that is why I am looking for some help here. Also the GI says we do not want to do a gluten challenge until she is at least 4 and more stable in her weight and eating because he does not want to see us where we were last year with her not eating or drinking at all...

Thanks for any opnions and support you may all have to offer me!!

Good Lord, get a new GI doc! You may think she had no reaction to "these things" but many celiacs don't exhibit symptoms, all the while they are experiencing intestinal damage.

One thing you can consider is genetic testing. Genetic testing will determine her risk of having celiac disease (and any other family members risk - don't forget, this is a genetic disease) - - this test is not affected by diet so it doesn't matter if she's eating gluten or not. It will definitively show which club you belong to:

the club that has the genetic predisposition to celiac disease,

or the club that is NOT a candidate for the disease.

Here's a link to an article about it on celiac.com that explains it (10 Facts Celiac Gene Testing):

https://www.celiac.com/celiac-disease/ten-facts-about-celiac-disease-genetic-testing-r1255/

If you search the web you can find places that do the testing.

Do you have a local Celiac Disease chapter, or support group? You can usually get names of local Dr.s that are knowledgeable about celiac disease.