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What Would You Do If It Was Your Child?

katiekay

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katiekay Explorer
katiekay
Posted

I am new to learning about celiacs. My daughter is 18 months old.

She may have celiacs disease. We just did a blood test yesterday to find out if she has it - due to failure to thrive (gain weight) and diarrhea and vomitting. (She has not even gained one ounce since 9 months old and has actually lost two pounds during the time that she has had diarrhea. I had taken wheat out of her diet during the last couple weeks due to other reasons and found improvement even though we never quite got it all out of her diet. The doctor said yesterday that I should not do this since we do not have a diagnosis. She has had diarrhea since Saturday (I am writing this on Thursday night; 6 days later). Today she had the wheat totally given back to her and since this morning has had 7 diarrhea episodes some worse than others. It feels like she has spent most of the day on the potty and that this has been the worst day of them all.

I feel like a terrible mommy watching her be sick. She is very lethargic and has been all week. Alittle walking tires her out but today she is very shaky on her feet and goes from furniture to furniture when she does try to walk. She has also been sick for 6 days so this could cause the weakness.

So my question... is it bad to give her the wheat back if you think the LO has celiacs just so you can get a diagnosis?? I know my family, my husband, his family would all accept it more with a diagnosis and it will always be a fight if I don't.

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eatmeat4good Enthusiast
eatmeat4good
Posted

I'd call the Dr. and report all of these symptoms immediately.

Then find out when you will get the test results.

Are they going to do an endoscopy?

It has to be so hard watching her suffer like that. Poor thing.

You are a good mom. Advocate for your child by letting the Dr. know the seriousness of her reaction on adding wheat back. Try to get the testing done as soon as possible.

My decision was to forget the teseting for myself and my son. But my child is 16. I don't know what to tell you but I don't think I could let that go on very long.

I know it is important to try to get tested. See if the Dr. will expedite the endoscopy or schedule it anyway due to diarrhea while you wait for blood test results. Maybe he can make a phone call and expedite the lab test results from blood tests. It is worth a try.

Hang in there mom. I know it feels terrible to watch your baby suffer. I would write down her reaction episodes of intake and output so you have a record for the Dr. if this is to continue.

Hope it gets better soon

ciavyn Contributor
ciavyn
Posted

Oh my goodness -- you poor thing! I'm with eatmeat4good -- report to the doctor ASAP. She's too little to go through all that for very long. You are her mother -- you do what you think is best and what you have to do. What others think won't matter in the long run. Hang in there.

alex11602 Collaborator
alex11602
Posted

I am new to learning about celiacs. My daughter is 18 months old.

She may have celiacs disease. We just did a blood test yesterday to find out if she has it - due to failure to thrive (gain weight) and diarrhea and vomitting. (She has not even gained one ounce since 9 months old and has actually lost two pounds during the time that she has had diarrhea. I had taken wheat out of her diet during the last couple weeks due to other reasons and found improvement even though we never quite got it all out of her diet. The doctor said yesterday that I should not do this since we do not have a diagnosis. She has had diarrhea since Saturday (I am writing this on Thursday night; 6 days later). Today she had the wheat totally given back to her and since this morning has had 7 diarrhea episodes some worse than others. It feels like she has spent most of the day on the potty and that this has been the worst day of them all.

I feel like a terrible mommy watching her be sick. She is very lethargic and has been all week. Alittle walking tires her out but today she is very shaky on her feet and goes from furniture to furniture when she does try to walk. She has also been sick for 6 days so this could cause the weakness.

So my question... is it bad to give her the wheat back if you think the LO has celiacs just so you can get a diagnosis?? I know my family, my husband, his family would all accept it more with a diagnosis and it will always be a fight if I don't.

I'm with everyone else. Call the doctor. We are going through this with my 15 month old except our doctor just diagnosed with no test, but now everything that happens they blame on celiac. I called a children's hospital yesterday and was told that it is not normal for anyone to have diarrhea for that long especially 5-8 times a day (my daughter has had it that many times a day since she was born). Good luck to you and your little one. I know that it is extremely hard to watch and I hope that you get the answers you need. The only other thing I can think of is call the school she may be going to in a few years and she if they will accomadate you without a doctor's diagnosis. Again good luck.

katiekay Explorer
katiekay
Posted
  • Author

Hi... I wrote my original post in a very confusing way.

She started diarrhea and throwing up on Saturday. On Wednesday we went to the doctor for her 18 month checkup. Due to failure to thrive since 9 months he had her go for blood tests. During that appointment he asked about celiacs in the family (I think the diarrhea and throwing up may have been what triggered it for him) and that is one of the blood tests she had. Yesterday (Thursday afternoon) I called the doctor and talked to him about the fact that she'd had so much diarrhea. He said that it was fine. He had checked her for dehydration and he said just keep going. He explained the signs for dehydration (no pee, dry mouth, sunken eyes). She still didn't have any of that.

Wednesday night my inlaws bought a bunch of bottles of pedialyte for her and she drank alot of it Wed. night and all day Thursday. UPDATE for this morning... she seems to have alot more energy and her poop this morning looked more like poop and less like diarrhea (still not great but alot better).

I will call them at 10:30 am to see if they have an update on the celiac's test. When I talked to him yesterday afternoon he had all other results (all great) except celiacs. He thought it would be a little longer. I think it will actually be Monday before I get results. UGH!!! I feel like other things have gone down hill - like she'd been getting better about signing to communicate and now her signs are all confused. I don't know if I'm overreacting since her sickness is actually getting better.

QUESTION What do I do if the test comes back negative??? I was kinda getting alot of the wheat out over the last two weeks (although not perfect) and I know she needs wheat to get a positive. My husband will never accept keeping her wheat free unless we get a test result. He will never go for any invasive test like a scope.

potatopeelingmom Newbie
potatopeelingmom
Posted

Hi... I wrote my original post in a very confusing way.

She started diarrhea and throwing up on Saturday. On Wednesday we went to the doctor for her 18 month checkup. Due to failure to thrive since 9 months he had her go for blood tests. During that appointment he asked about celiacs in the family (I think the diarrhea and throwing up may have been what triggered it for him) and that is one of the blood tests she had. Yesterday (Thursday afternoon) I called the doctor and talked to him about the fact that she'd had so much diarrhea. He said that it was fine. He had checked her for dehydration and he said just keep going. He explained the signs for dehydration (no pee, dry mouth, sunken eyes). She still didn't have any of that.

Wednesday night my inlaws bought a bunch of bottles of pedialyte for her and she drank alot of it Wed. night and all day Thursday. UPDATE for this morning... she seems to have alot more energy and her poop this morning looked more like poop and less like diarrhea (still not great but alot better).

I will call them at 10:30 am to see if they have an update on the celiac's test. When I talked to him yesterday afternoon he had all other results (all great) except celiacs. He thought it would be a little longer. I think it will actually be Monday before I get results. UGH!!! I feel like other things have gone down hill - like she'd been getting better about signing to communicate and now her signs are all confused. I don't know if I'm overreacting since her sickness is actually getting better.

QUESTION What do I do if the test comes back negative??? I was kinda getting alot of the wheat out over the last two weeks (although not perfect) and I know she needs wheat to get a positive. My husband will never accept keeping her wheat free unless we get a test result. He will never go for any invasive test like a scope.

I've met a mom at my local Celiac group, who described her son's symptoms very similar to your daughter. She almost lost her son due to the advanced dehydration.

She had to insist he was scoped immediately at our local Children's hospital, even after emergency was sending her home dispite his worsening condition. She knew someone who worked at the hospital who was able to get her an appointment with the GI specialist.

I think you need to take action for your daughter as well. She sounds like she is at her limit with Gluten and she needs to get off it asap. So if you need the testing get it done now. Or your family members will have to accept that she is feeling better off gluten. I would leave the vomit and diarrhea for your husband to see for himself.

My son was 11 when his system shut down and would not allow anymore gluten. Mind you he was not a young child, but he still was in a great deal of pain and could not stay far from a toilet as well. This went on for two weeks. I stopped gluten before our GI appointment. He was feeling much better within 3 days and was able to finally start eating again. By the time we saw the GI specialist 3 months later, I brought in a chronilogical history of his symptoms. The Dr. totally agreed with us that he has Celiac and lectured or son to never eat gluten again. He sees this Dr. every 6 months now.

Good luck. I hope you get some answers soon.

Monica

katiekay Explorer
katiekay
Posted
  • Author

Hi... she hasn't had any diarrhea today. She is still a shaky walker.

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T.H. Community Regular
T.H.
Posted

Hi... she hasn't had any diarrhea today. She is still a shaky walker.

If the test is negative, and you are willing to do a gluten free trial, maybe this might help persuade your husband: there was a very recent study done that found out that a form of gluten intolerance that is NOT celiac disease seems to exist. All Celiac tests are negative, but the gluten is still causing physical problems.

There is no test for this, at all, other than dietary changes. That's it. Nothing else. But there is information that he could read on it, if he's willing.

The study abstract: Open Original Shared Link

Articles on the study:

https://www.celiac.com/articles/22430/1/Study-Shows-Gluten-Intolerance-Without-Celiac-Disease/Page1.html

Open Original Shared Link - this site has some more links about non-celiac gut issues, too.

I don't know if these would help, but it might at least get over the hump of taking your midget off of gluten, just to see, even if the test is negative. And then if there is a noticeable change in her health, then hopefully even your husband would be hard pressed to ignore that evidence.

katiekay Explorer
katiekay
Posted
  • Author

Thanks for the info. Hopefully will get test results Monday and then go from there. Right now she is eating wheat and dribbling all over the floor. I think one morning of a bunch of pee accidents may be enough to convince him to try getting serious about going wheat free.

MacieMay Explorer
MacieMay
Posted

Thanks for the info. Hopefully will get test results Monday and then go from there. Right now she is eating wheat and dribbling all over the floor. I think one morning of a bunch of pee accidents may be enough to convince him to try getting serious about going wheat free.

Just as FYI... My daughter has a gluten-intolerance ALL testing for Celiac came back negative. She was 18 mos when we went through all the testing. According to research and what I've read on here, testing in small children in unreliable. Keep this in mind if testing comes back negative. What you can do is ask your Dr. to follow your daughters progress while you give the gluten free diet a try. That way if she responds well you can get a diagnosis that way. That is what we had to do. We were not failure to thrive but lactose intolerant, lots of D, bloated belly and diaper rash after diaper rash. All has improved or has been eliminated since being gluten-free. I hope this helps! Good luck!!

katiekay Explorer
katiekay
Posted
  • Author

ok... thank you!!! i will do that

tarnalberry Community Regular
tarnalberry
Posted

don't forget that if you're trying to test gluten, wheat free isn't enough.

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