Celiac Disease (Trying to find out what is wrong with my kids)

[GoofyG]

ok, I'm so frustrated at this time. I have 3 kids that all are titled failure to thrive. I really hate that term. My kids were healthy babies till they all hit 6 months. My DD4 had an scope done when she was almost 3, it came back fine other than she has chronic gastritis. They didn't test my baby for they said she was to young and they didn't wnat to scope her. When she was about 15 months old, I asked about milk. They had me take her off of it, and she has done great, but she still has problems, I will say she is the better one of the 3 kids now. Now for the baby, he will be 7mos on the 19th. He was doing great at 4mos, at 6 months he didn't grow in height at all and dropped below the 1%. There is something bothering me of all this. Why are all 3 of my kids having problems growing. I keep asking about celiac disease, but because of the test that came back neg with the oldest DD, they say they don't have it. They may not, but why aren't they growing! I would love to try them all off of wheat and just see what happens. It may not be that, but at least it is ruled out. My DD4 is only 32lbs, and DS (6mos) is 13.5lbs.

What made them wonder about celiac with your loved one? I'm just trying to understand everything. I just worried about my kids. There is something bothering me, and it won't leave me alone. I keep saying this doesn't feel right!

 

[mechurchlady]

You need to do a food diary. List every item the eat or drink. Celiac will not show up until the child is exposed to wheat such as in cereal. If there was a change then what happened that caused the change. I would also go and get professional help and diagnosis for their allergies. A trip to grandmother may show changes like better health because grandmother does not have the allergen in her home or worse health because grandmother serves lots of allergen filled foods.

I am crashing tired so cannot add more right now, sorry, and I have celiac. homeopathic chiropractor told me no wheat then later I had a real medical test done.

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adding this

manure to that manure about the test being negative so all the family is negative.
False readings do happen. IF a person is not eating gluten then the test can read negative. What if three brothers are high risk for cancer and the older brother is cancer free? Yeah, telling the other two brothers not to test for cancer would sound ludicrous. I am tired so I will now walk away and take the idiotic-doctor-wapping broom with me.

 

[pigletforever]

A friend of mine has 3 kids and they have what is called Milk Soy Protein Intolerance. You might check into it. sounds similar to what you describe.

 

[quasar4legs]

I would suggest finding a good allergist and dietician and doing an elimination diet.
Our son attended an allergy clinic at a major teaching hospital near us and after doing an elimination diet we were able to identify a number food intolerances that were affecting his long term health. We had trying doing this ourselves but it made a big difference to get good professional help.
I know several children with celiac's and all were classified as 'failure to thrive' most with additional gastro intestinal problems.

I hope you can get the issue resolved for your little ones, it must be a worry for your whole family.

Trish

 

[buzz for boys]

My dd is now 2 1/2 and we have finally been given a diagnosis of coeliac dissease. From around 9 months she went from growing healithy to dramatically losing weight.
Her symptoms were constantly pooing - it was a funny colour and smell too !
Her skin went a yellow colour
She was constantly crying as if in pain although all drs said they cud find nothing wrong.

My gp ruled out celiac disease and told me it wouldnt be that as neither me or dh has it and there is no family history. I asked the dietician that my son sees to have a look at dd when she was a little over 12 months old as like you I was convoinced that her idet had something to do with this sudden change in tempermant - she told me it was 99% certain to be cd on our first visit and we cut out gluten straigt away. Within 48 hours my dd was feeling better and after a week the change was amazing.
My advice would be follow ur instinct and ask to see a dietician !! If you have any more questions i am more than happy to help.

 

[mechurchlady]

I am having a reaction to wheat right now and am on verge of a major meltdown. Everything I am eating is gluten free so now what, lol. As for stinky yellow poop that is also seen in people who are on olestra sometimes and is a sign that the body is excreting excess fat in the waste. In celiacs that means they are not able to absorb fat. Right now I am at the light coffee stage so I know I have been into wheat or been eating a high high fat diet, lol. Whe I get into wheat my nose throbs and the right nostril an ulcer sore. Nonhealing, oversensitive to pain, mood changes, and boils, sores, and pimples are signs the body of the celiac is not working right because of the damage to the stomach. The stomach cannot give the body the calcium, vitamins, fats, potassium, etc that is needed.

Try Hansen's soda for gluten free pop. I am now going to go over the list of thigs I ate last night but it wont make sense to me if it is cross contamination related. How can I commiserate with a mom with an autistic kid some may wonder and I can tell you that right now doctors deny what we that parents and/or patients know is true or worse get slapped with a label and no help. My father had stinky pooh and stomach troubles when I was a kid so maybe he had a mild form of celiac, not sure. It is ludicrous to say that a person cannot have something just because the parents or siblings do not have a disorder or disesase. Some things like syckle cell anemia run in families but really them doctors need some relearning on gnetics and what is not hereditary.

Meltdown not done but I do feel better after another rant about doctors.

hugs and chocolates
good luck with the kids
Laurie

 

[GoofyG]

I may ask about a dietician. I don't want to take them off by myself cold turkey. I just wish they would listen to me. They probably think I'm a crazy women, wanting my kids to be sick. I just want them to be able to eat, gain weight and be healthy.

I'll have to wait till the new yr to do anything. DD2 who has had the most affect also has really bad ears. She lost a tube in Aug, well she had a hearing test done and failed both ears. Also found out she had fluid in the ear she lost the tube. We went and saw the ENT Tues, and now she is having her adnoids taken out and the tube replaced on Monday morning. Her first time to be sedated, then she has to go back and start figuring out what is wrong with her ears.

I'm sure we start the baby next yr to, I don't think he has gained any weight since they tried him with cereal in his bottle.

 

[mechurchlady]

It is not wanting your kids sick but you wanting the proper labels on your kids. Them labels then allow you to research online and elsewhere how to help your kids and to see what is normal for that label. I now know I have celiac so I have to avoid wheat. I have the label "bad knees" so now I avoid kneeling. My label of SID/SPD has led me to self education, retraining, training, and self awareness as well realizing I am a dismal failure in life because of the SID/SPD. I also have that SID/SPD label which allows me to see a whole better future.

Celiac is the damage of the stomach so I am going to ask you to think of it in another viewpoint. Would you leave your child in the sun if you knew it burned easy because of its fair skin? Would you let your kid play in a vacant lot that you knew was dangerous? So why do we allow doctors to tell us to wait weeks or even months when that child is sick and hurting. I would be raising a storm and do everything to get them tested and if it is not celiac then another alergy is to blame probably. IT IS WRONG, VERY WRONG to say that a child that is not thriving is to wait weeks or longer for testing. As you can tell I do not like doctors very much. If the kid is not thriving then WHY. They should be looking at the life of that child for some clue like location, pets, soap, food, drinks, or lead paint.

It is not wrong to want to know why your kids are sick. If your child has celiac then the immune system will be down and that is not good for surgery. Right now I would not do surgery because my nose hurts which means my immune system is compromised.

 

[bopper]

Since all your kids seem to have the same issue, have you tried seeing a geneticist? I watch those Mystery Diagnosis shows and it seems often the geneticist helps figure out a genetically-caused disease.