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Can Testing Wait?
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6 posts in this topic

I have a 3 year old son who has had severe GI issues, iron deficiency anemia, missing tooth enamel, and unexplained outbursts since he was 6 months old and started solid food.  I could not get my pediatrician to understand how bad it was.  I even took video of my son screaming in pain as he went to the bathroom.  And this was a daily thing!  In my heart I knew it had to do with food.  So the first thing I did was eliminate dairy.  It helped for a little while, but then things went back to the same as before.  Still no help from pediatrican.  He even refused to give me a referrral to a GI doc!  (We are switching pediatricians, btw).  Anyway, I was desperate to help my son, so we put him on a strict gluten free diet about 4 months ago.  The change in him is amazing!  No more GI issues.  No more anemia.  No more tantrums.  He is more outgoing and happy.  He could finally potty train.  And we were able to get him off the laxatives the doctor had prescribed for the past 2 1/2 years.  Here is my dilemma: I have backed myself into a corner when it comes to testing!  I know he has to be eating gluten in order to get an accurate diagnosis.  I am reluctant to give him gluten because when he has had it by accident in the past few months, he gets SO sick.  I don't think I could do that to him.  So, can the testing wait until he is older and can handle a gluten challenge better?  Should I bite the bullet and do it now?  I also suspect my 11 month old daughter has similar issues as my son. She does not eat gluten either because it makes her very sick and constipated. Any opinions and experience would be great!  Thank you!

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The longer he has been off, there is possibility that the symptoms will worsen once it has been reintroduced.

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Testing in young kids can be very hit and miss. My 4 yr old was tested at age 2 she had the full panel everything was negative apart from the genetic test. My 2 yr old was tested a few months ago, only thing that showed up was aneamia that was slow to respond to iron supplements. Thankfully our ped said given her sisters reactions, and genetics, and the factbshevwas anemic ti just assume celiac.

Some schools and colleges will not accommodate needs without an official diagnosis. But at this age the tests are so unreliable, and there s also the chance it is non celiac gluten intolerance.

I hate not knowing for sure with both kids, especially has there are so many other autoimmune diseases in the family, but on the other hand I don't want to make them sick and the tests be negative.

Our allergist said to try a gluten challenge at age 5 I really don't know what to do. It's a hard decision.

Our 2 yr old never seemed to be in pain, now after one tiny slip up she screamed for 6 hrs solid. My 4 yr old suffers with pain constipation skin and behavior issues after any gluten.

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Would your doctor give a diagnosis of non-celiac gluten intolerance (NCGI)? That way your kids will be covered if they need accommodations but you do not have to put them through weeks of gluten ingestion.

I'm up in Canada where I think it must be easier to get care givers to accept health issues, but I ALWAYS send food with my kids when they are out of the house and away from me so it is a non issue (mostly). You can train your kids never to accept food from people unless you have okay'ed it first; my kids accept that rule better when they know that I will have alternate treats with me or at home for them to have if there are foods they can not eat.

Best wishes and welcome to the board.

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You've come to the right place!

 

As stanleymonkey said, some schools and colleges won't make institutional level exceptions without an official diagnosis (such as allowing for different meal plans in college or allowing freshmen to live in an apartment rather than regular freshman housing). However, I haven't had trouble getting fed when I went directly to the manager of my dining hall even though I don't have a full diagnosis yet. But it all depends on your situation. If you're planning on staying in the same area, you could call the elementary school your son will be attending and ask about their specific policy for allergy/intolerance accommodation in relation to medical records. It also affects later insurance coverage. For example, if I had tried to set up an appointment with a dietitian on my own without getting a referral after my blood tests came back a strong positive, I would have had no help from my insurance company. But since I was referred after my blood tests and the insurance company was notified about this change in my medical history, I get full coverage for nutritionists and dietitians. 

 

If you do decide to get your son and daughter tested for celiacs, it would be better to do so before they enter school if there are a lot of behavioral issues associated with consuming gluten. Also as shadowicewolf said, the longer people are off gluten the more likely that reintroduction will lead to exacerbated symptoms. For blood tests, the general recommendation is a 12 week gluten challenge and for a biopsy it's around 2 weeks. I'm not sure if you could convince your GI to do an endoscopy without blood testing. But call, talk to them, explain. Every doctor's office is different. 

 

One last thing, if you do think it is celiac's, then you and your partner/the children's other biological parent could do a gluten challenge and get tested for celiac's. There is a high prevalence within families so if one of you had a positive result then you could be a little more certain that having your kids do a gluten challenge would be worth it. You could also get them genetically tested because it is genetically linked, but it could still be non-celiac's gluten intolerance as well. 

 

Good luck and I hope you get the answers you need without too many issues! We're always here to help if you need anything. 

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Wow, thank you all so much!  You are all very helpful!  I actually called today and set up an appointment with a new pedicatrician.  I am hoping I can get the referrals I need from a different doctor.  I would love to find an understanding GI who can give me some options and ideas on what the best steps to take would be.  Good idea on my husband and I getting tested.  We all went gluten free with my son, and I have noticed dramatic differences in my health and moods.  It makes me wonder... If you have any other ideas or information for me, I would love it.  Thank you again!  It is so refreshing to "talk" to people who take my concerns seriously.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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