Did you have siblings tested?
posted 19 Sep. 2009, 5:49 pm (9 moms have responded)
Just curious if anyone had siblings tested once one child was positive. I'm debating having my 2 year old tested. His pediatrician was like if he's not showing symptoms, why do it. I trust his opinion as we've gone through a bit with him and I'm on my third child. My concern was that even if asymptomatic now what if he has it and doesn't absorb nutrients properly just to have problems show up in the future. Anyway, just curious, would like to hear your opinions. '
(My third is only 3 months old so she can wait. Besides, she's showing enough food sensitivities while breastfeeding!) Oh, as a side note, did any of you moms or dads get tested - if you weren't already diagnosed yourself?
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posted 22 Sep. 2009, 8:26 am
I was tested in 2005 and I was the first in my family to have the test done. I followed by having the blood titer test done in both of my children. My daughter's levels were off so had her tested as well and she was found to have celiac as well. Have done the blood test on my son every year since then - this last go round his levels were off so back to the gastro doc to get further testing on him. We also have twin 7 month olds and so will start doing the testing on them at a year.
We have a STRONG family hereditary with celiac. My biological father has, I have 2 sisters that have, and they are now in the process of getting their children tested. From the research that I have done, it can be hereditary so yes, you should get other children tested as well as yourself if you haven't already been tested.
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posted 24 Sep. 2009, 3:24 pm
Hi Nicole,
I would have them tested. I think it is still a 22% chance for a sibling. I've heard many stories at support group meetings of non symptomatic siblings tested positive. I have a 10 year old Cilly and I have had my other two checked a few times. Recently I had the gene testing done on them too. They both tested positive for the gene, so we will just keep an eye on them for now. Hope that helps!
posted 27 Sep. 2009, 6:25 am
I have heard it is suppost to be 1 in 5 sibblings have it...my 3 yr old does have it . i also have a 11 month old... I got a blood test for him which i am collecting tomorrow...:( i didnt do anything UNTIL he started showing signs poo is very runny never really NORMAL from birth...
Dont think they really want to test until they have 2 but up to u i know where ur coming from ...piece of mind....i hope it is nothn wose than coeliac...
Over all its only a blood test so it wont kill them to get it done...
and u can breathe.....
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posted 9 Oct. 2009, 11:59 am
My son has celiacs (diagnosed at 10 months old and is now 2.5 yrs old). We had his 2 sisters tested even when they were not having any symptoms. Both tested negative, but we are retesting his younger sister with gene testing also. She shows signs of something, but not sure what. For now we are just observing his older sister.
My husband tested positive a few months before my son was diagnosed and I tested negative recently.
posted March 14, 11:21 am
My daughter is on her bio-dad's insurance so I did talk to him and let him know that he may want to get her tested. However, she shows absolutely no symptoms of anything so I am leaving it up to him. Plus I suspect the gene came from my husband since his family has a history of undiagnosed GI issues. Our youngest is just turning 1 now and we are only planning on watching him and seeing. I don't feel the need to put him through the testing and/or endoscopy (which my doctors won't do until after 18 mos). Additionally we have changed to be almost completely GF household. I rarely ever give Ryan anything with gluten. I mostly feed him the same thing as his Celiac brother. So if he isn't eating gluten it will impact the test. We will continue to watch him and play it by ear.
My husband and I have not been tested but that has more to do with insurance issues at the moment.
posted March 20, 1:43 am
My older son tested positive for Celiac's at the age of 4. Since we are currently living in Germany, the German doctors are VERY proactive on catching this early, so they did test my 2 year old. I am glad they did. He tested postitive as well. Neither one showed signs for Celiac's other than lack of growth. My husband and I were both encouraged by the German doctors to be tested, and my blood work came out negative and we are still wating on results from my husband's. I would at least have the blood work done if I were you. Good luck with it all!
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posted March 25, 1:57 pm
I suspected Celiacs in myself and three of my four daughters. I tried to get them tested with a gastro in Cincinnati and when I brought them in (after emailing them about it all ahead of time and was TOLD to come!), the doc blatantly told us that since they weren't "wasting" that they weren't Celiac! I couldn't believe the man's ignorance on Celiac Disease and I had only been reading on it for a couple of months before hand. I had a list of each of their symptoms..and the list wasn't short. He still refused to test. Just a simple bloodtest. This was after my family doctor refused, but offered to test my MOTHER (who saw the same doc)! No, it wasn't the gene test he was referring to either, but the IgA test..which should be done on an individual basis. Anywhooo..I resorted to putting my girls and myself on a gluten free diet to see if it helped, as I couldn't get anyone to test them. I cried for a couple of months first, as I was scared to make such a drastic change in their diets and plus I wasn't sure i wanted to know the truth. But I did it...July 1, 2007. Within four days, blisters (DH) i had on my legs for ten years went away. My eldest's diarrhea went away. My second daughter's canker sores cleared up and her bloating after meals stopped. My third daughter's migraines stopped and her psoriasis and ezcema started to disappear! My youngest (3 at the time) had no symptoms of Celiac's so I didn't put her on a gf diet at first. My daughters were re-exposed to gluten within a week of going gf and reacted BADLY...they were all down with diarrhea, cramps, vomitting,etc. So i had my confirmation. I too reacted the same way. After a couple of weeks of trying to make just us four gluten free and not the other two (my youngest and hubby), it just got to be a pain in the butt. So, I decided that I was ONLY making gf meals...period. I was able to substitute ingredients for our regular meals and has worked great and hubby doesn't mind a bit. My youngest...she went gf after that point. She had no symptoms prior to improve from though, so I had nothing to guage her on. However, whenever she has gotten exposed to gluten she reacted with diarrhea and bad cramping..enough to keep her awake at night. It was pretty bad the first time. I had no idea she had gluten til I rechecked the label on a small bag of chips she had had. I felt awful..but knew she too was celiac then. I kept her gf after that. Once again she was exposed to gluten and she got a TERRIBLE UTI (urinary tract infection), which doctors wouldn't believe was from Celiacs til i went to the ER with her. There, a doc asked me about what she'd eaten and I told him. I told him about the Celiacs and he said it indeed could cause it. She was given meds, after a MONTH of haggling with docs, three ER visits and one after hours clinic visit and hours of her sitting on our toilet for relief. Since then, any time she is exposed to gluten, she gets UTI's, along with my third daughter. The last time she was accidentally exposed she got blisters all over her hands....DH. This definitely sealed the diagnosis for ME. Celiacs are the only ones to get DH..not just gluten sensitivity. So, this is how I found out my youngest had Celiac's Disease. My other daughters have since gotten blisters as well, from cross contamination/gluten exposure. But we are MUCH better off gf now.
I have since done a LOT more of reading on Celiacs Disease. I have read that children under the age of 7 - 10 years old are very hard to diagnose due to false negatives on their blood tests and negative endoscopies (not enough damage to tell at that age sometimes). So, sometimes, an elimination diet is the only and best way to go if you suspect your child may have Celiac. Like my youngest, she had no symptoms UNTIL we went gluten free and we found out after re-exposure to gluten. If we hadn't tried the diet, she would've had silent damage her whole life and not have known. So, if it is already in your family, there is always the chance of your young one having it despite lack of symptoms. If she has latent Celiacs, then she will not react even upon reintroduction of gluten to her diet. If it is silently active, then she will. Good luck.
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posted March 25, 2:06 pm
Oh..three of my four daughters also are being treated for idiopathic (unknown cause) growth hormone deficiency. I am certain that the Celiacs played into this as well, since i too had it as a child along with my twin. We had many celiac symptoms growing up but had no idea back then. I wish endocrinologists would check for Celiacs as soon as a child exhibits lack of growth for an unknown reason. Ugh.
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posted March 30, 3:49 pm
Wow Heather, you have been through it, huh? I can't believe that the GI doc you saw was so ignorant. I am a big advocate of getting the bloodwork done and then the biopsy if that is positive, but your situation seems so clear. I'm glad everyone is feeling better. I hope they are all adjusting to the diet okay. Thanks for sharing your story!