What Would You Do? 2 Yr Old And Endoscopy...

[sashabetty]

My daughter has not been diagnosed. She was sick at 13-16 months (weight loss, chronic runs with undigested food and mucous coming out) until we took her off gluten, and she had a remarkable improvement. We have since put her on gluten for 2 months and she is has really cranky episodes (grimacing, crying, not wanting to be touched but at the same time screaming, "mama, I want you!") and infrequently looser stools, though a little stinkier in general, and sometimes a really bloated pregnant looking tummy. She is maintaining her weight, and she isn't exactly sick.

Her bloodwork came back inconclusive (low IGA/normal TTG), though it was done too soon to be accurate, but with the low IGA I am told it the TTG results can't be trusted. She has one of the two genes, though I didn't find out which.

The GI originally said she was a "textbook case" based on her history (not based on any family history), but she has since "decided" my daughter has no issue with gluten. Based on the fact that she didn't have a severe enough reaction to going back on gluten I guess. I don't really know why she decided there is nothing to my concerns or her past history.

The GI told me we are done testing, but I didn't believe that, so I asked for another blood test, but she said that it wouldn't show anything based on her IGA result. So she said, go for the "gold standard", get the endoscopy, which she scheduled for this week.

My family, my husband, my MIL (retired MD) say that my 2 yr old seems fine, her behavior is normal toddler stuff, just keep her on gluten and wait and see. I cancelled the endo.

But when she is having a hysterical episode it typically seems to be within a couple of hours of heavy gluten consumption (and then I think, I want the endo NOW), though plenty of times she eats gluten and doesn't have an episode.

I want to do the endo, but I am in a position where no one sees what I see, no one is supportive of doing an "invasive procedure", and I am afraid of doing the endo too soon and having it come back negative but still believing that she shouldn't eat gluten. With a toddler that will only sometimes let me gluten-load her, it's hard to know when it would be enough gluten for the test to be accurate.

I know she could just go back off of gluten but it will be a lot harder now that before she knew better, and I really want to get a diagnosis for her.

Meanwhile I have been feeling really crampy and bloated since we have gone back on gluten, and I am starting to wonder if I should consider if I need to be tested.

And she has a 9 month old sister who hasn't eaten gluten yet.

What would you do?

[Sharon C.]

From what I understand, the endoscopy can be inconclusive also.

[3boyzmom]

WOW! What a tough one...

If I were you I'd keep her gluten free! It sounds obvious to me that she is reacting to gluten... I thought my son's behavior was all becasue of his personality and his age, and it was not. When he went gluten free it was like night and day. When he has had gluten accidents he is like Dr. Jekyl and Mr. Hyde.

You need to stand up for her and her health and keep her gluten free. The longer she stays on it the more likely it will be that she develops some kind of auto immune disorder.

Have you considered sending away for Enterolab testing? It is non-invasive and could give you the ammunition you need to get support from your family for going gluten-free.

Priscilla

[Boojca]

Well, here's the deal. Kids this age tend to heal relatively quickly, bc there just has not been the years of damage that occurs in older kids or adults. So, the fact that she's been gluten-free may 'mess up' the endoscopy. However, if she's eating a normal diet again and you are starting to see "some signs" why wait for the worst to happen...diarhea, weight loss, etc.... My son is 2 1/2 and was diagnosed in June. His ONLY symptoms were that suddenly, between February and June he dropped from 27 lbs to 23 lbs, had a bloated Ethiopian belly, skinny arms and legs, and a flat butt and no energy. He had none of the GI symptoms. My Pedi. GI doc (who, by the way, was one of the 10 on the national panel to develop the protocol for better diagnosis in children and to promote it nationally to pediatricians...so the man knows his stuff) told me that my son presented in a way that only 1 in 5 kids diagnosed with celiac disease present, so we were very lucky. Most kids get the GI symptoms, etc....

Anyway, the best advice I can give you is go with your gut. If your gut is telling you something isn't right, go with it. No one can argue with a mothers intuition. We have a special bond with our children that no one else has and we know when something isn't right.

The endoscopy is "invasive" but it's not horrible. In fact, my son had an endoscopy and they knocked him out for it, it took 20 minutes, he "woke up" about 1/2 hour later and immediately asked for McDonald's then he proceeded to run me ragged the rest of the day. So, while it's invasive, it sure didn't slow my little guy down or traumatize him any!

I hope this helps.

Bridget

[mat4mel]

I totally know where you are! I have a 2 1/2 yr old, who also has low IgA and neg ttg. Did they also run the anti-gliadin antibodies? That might help, maybe not though with the low IgA. Anyway, I keep going back and forth on the endoscopy issue. Seriously-- one day I will be okay doing the gluten challenge and biopsy, and then one day I am set on just sticking to my instincts (that tell me she does have celiac). I have heard too many stories of kids having negative biopsies, only to be found to improve greatly on the gluten-free diet.

Sorry, I am not too much help, but there have been several people in your same situation. It is a really tough one. Is your husband supportive? Mine is very very supportive. So is my family (parents, siblings). But his family, the ones that I suspect the gene is coming from (his mom has all the symptoms but is in denial, and my husband and his brother had symptoms as children) think I am complete nut!

Mel

[hapi2bgf]

If it were my child, I would have to say take the next step in testing. Either try the Entro Lab (Sp?) or do the endoscopy. No one wants their child or loved one to be diagnosed with Celiacs or any other disease, but your child is showing signs of problems with something. I would feel better testing and eliminating the Celiac disease possibility for sure or learning that your child does in fact have it through a fail safe test.

Good luck

[TaylorsMom]

"Her bloodwork came back inconclusive (low IGA/normal TTG), though it was done too soon to be accurate, but with the low IGA I am told it the TTG results can't be trusted. She has one of the two genes, though I didn't find out which."

Can someone explain to me why results with a low IGA and a normal TTG can't be trusted? My 2 yo daughter had the same results and I wasn't told anything other than the results were normal. But her GI still thinks she has Celiac and is doing an endoscopy tomorrow. I'm curious to know if sometimes in young children the results come back this way, when in reality they do have Celiac.

Any thoughts?

Megan

[Smunkeemom]

After my 12mo old got diagnosed we did the blood test on my 3yo and she had two of the things high. so we did the endo. I don't think that it traumatized her or anything. If you are really worried about it I would just go ahead and get it done because then you will know. If you are more worried about the endo just put the kid back on a gluten-free diet. the only person in our house with celiac is the baby but we all eat gluten-free its not so bad. You aren't going to be depriving her of anything but maybe some tummy aches. btw my mother in law still says that the baby was fine even after she lost 1/2 her body weight because she wasn't there for the diapers and the screaming or anything else. You are the mom and if you think that something is wrong check it out. You know better than anyone else what is going on with your kid believe me good luck

[sashabetty]

mother in law still says that the baby was fine even after she lost 1/2 her body weight

I am so glad that your baby was diagnosed! My daughter was on a downward curve for weight and I fear she would have gotten much worse if we didn't take her off gluten when we did. And I totally know the thinking the baby is fine, I get that from my MIL (retired MD) my mom, my stepmom, and a little bit from my husband. People only see what they want to see!

Well the endo is scheduled for the end of the month. Meanwhile her symproms are getting worse, lot of mucous in the stools, and average of 3 poopy diapers a day, and everyone says, well maybe if we saw the diapers we would understand.... I am going to start saving them for my mom to see.

Thanks everyone for sharing your stories, it's so hard to watch see our babies get so sick.