Negative Test Results, What To Do Now?

[Guest momx3]

My 14 month old just tested negative, I was certain that celiac disease was the answer to what he is going through. Itchy eczema that doesn't seem to be helped by anything, diarreah 4x per day, low weight gain... it all made sense. I took him to a dermatologist for the eczema to see if she had any insight. She ordered the tests, and they came back yesterday. She said that they were all negative, but that it could be because I had tried a gluten-free diet with him for a few weeks (I put him back on a "regular" diet for the last 3 weeks). I mentioned to her that I read that the tests may not be accurate for those under 2 and she sort of dismissed it. She said my next option is to continue with the regular diet & see what happens & then retake the test in a few months or to go gluten-free for a year or so & then retest after a challenge.... I really don't know what I should do. My son is just unhappy, clingy and uncomfortable. I don't think I can continue feeding him the regular diet. Not to mention, he's at such a critical age, I don't want to deprive him of any nutrients if it can be helped. Anyone have any experience with this? Thanks for your help & advice....

[TCA]

I have way more experience than I ever wanted to! Both my kids have celiac disease. My son went through 2 negative biopsies and inconclusive bloodwork before we found out that the tests are often inconclusive under 5. We put him on a diet trial and his has improved dramatically. His D was gone after 3 weeks and his growth has taken off. He's healthy again. My gut told me celiac for a year, but I thought the docs knew what they were talking about - boy was I wrong. As soon as my daughter started showing symptoms I asked for her to be tested and the drs. refused. She has a heart condition and they blamed it all on that. I am nursing and went gluten-free and the results were amazing. Follow your gut. A mother's intuition goes a long way. I wish I'd listened to mine sooner.

Did he improve on the gluten-free diet? If so, there's your proof.

Good luck and welcome!

[Guest momx3]

Thanks for your advice! Actually, he improved dramatically in the 4 short weeks that we tried gluten-free. His diapers were much more normal, he put on 2 lbs and his skin started to clear up, too. I nursed until he was 9 months old and between then & his 12 mo checkup, he gained very little weight. That was when I decided to try gluten-free, as I had eliminated nearly everything else out of his diet. It was interesting to see his weight climb so quickly once the wheat was gone.

[HeatherG]

  momx3 said:

Thanks for your advice! Actually, he improved dramatically in the 4 short weeks that we tried gluten-free. His diapers were much more normal, he put on 2 lbs and his skin started to clear up, too. I nursed until he was 9 months old and between then & his 12 mo checkup, he gained very little weight. That was when I decided to try gluten-free, as I had eliminated nearly everything else out of his diet. It was interesting to see his weight climb so quickly once the wheat was gone.

Well I'm hardly an expert on celiac but I've been a parent now for 11 years and if something helped my child that dramatically - I'd keep on doing it. I'm currently in your shoes - without answers and awaiting test results that may or may not be accurate. I want to know for sure as I'm sure you do, but it seems to me that you already know. It may not officially be named 'celiac', but what you do know is that your child is sick and if he doesn't eat gluten - he's not. Unless you are given a VERY good medical reason that he needs gluten in his diet - consider him celiac or consider him gluten sensitive or whatever you want to call it and get him off gluten.

JMHO

Heather

[Guest nini]

my daughter was dx'ed gluten intolerant based on positive dietary response... I was dx'ed with Celiac and therefore she is genetically predisposed to it, even though her ped. GI didn't seem to agree. The tests are highly unreliable under age 5 and just plain unreliable in older kids and adults. If the results are negative they cannot truly rule it out, but if they are positive it can confirm the dx.

I know my child is much better without gluten, I will not put her through any gluten challenge for any test, she's terrified of gluten and the way it makes her feel. You know your child better than any "expert" trust your mommy instinct and just keep that child gluten-free for life and watch him thrive.

[Becky6]

My daughter was neg as well. But the symptoms were to similar to celiac. So I had her go gluten-free. She has been gluten-free for 5 months and has gained 5 lbs, has normal bm's instead of D ten times a day, no behavior problems and she just looks better. I would say try the diet and if it helps just stick with it. Good luck!

[taweavmo3]

Ditto what everyone else said......just put him on the diet. I have one dd who tested positive, and two boys who tested negative. All are gluten free, and are doing much better. My 2 year old who tested negative had a wheat cracker at grandma's three days ago, and had a major reaction. He has a high fever today, and is miserable. So I don't put a lot of stock in the bloodwork for young kids. My one daughter who did test positive was 3 years old at the time, and looked like she was dying. We are still playing catch up one year later, there was a lot of physical and neurological damage done.

Try the diet, see if it helps. My 2 year old had eczema patches all over his body, and it has totally cleared up now. So has his lactose intolerance and terrible diaper rashes. His speech has also greatly improved. That's been proof enough for me! My ped dismisses all this as coincidence, but I know better.

[Guest momx3]

Thank you to all who replied, I think I will take your advice. The diet seems to work well for him, I know that it is the best thing for him. By following the diet, at best, we are keeping celiac disease at bay, at worst, eating healthier (I've actually been planning most meals, and we are eating less processed foods)-- certainly a win-win for everyone. Thanks for helping me put this in perspective!

Kate

[AndreaB]

I have a six month old son that broke out with eczema on his face just after he was two months old. I'm thinking the vac's may have tipped it off. Since then I have undergone allergy testing and found I am allergic to wheat/gluten, soy and dairy among a few others. The pneumoccocal has soy protein in it. He seems to react immedieately to soy and wheat (if I eat any), and it seems cross contamination with wheat may have been a problem a few weeks ago (its either that or vinegar in the mayo). My family is getting ready to do a stool test offered by enterolab which is much more reliable and can catch celiac disease before it does major damage to a person. Check out www.enterolab.com. You don't have to put your child back on a gluten diet to do this test as it reads IgA in the intestine which is present for a while after gluten has been eliminated. My son's eczema has cleared up almost all the way and I will gladly stay gluten/soy free.

[chocolatebunny]

It's interesting... my mom told me yesterday that she read an article on celiac which said that the results for the bloodtests are inaccurate 90% of the time! I don't know if this study was wrong but still, it's something to think about.

[indyceliac]

My blood tests were negative....but the intestinal biopsy was positive. My kids do better gluten free so they will stay that way..regardless of any tests. Follow your insticts. Remember doctors are only "practicing medicine".

[Guest Justine]

Hi this is my first time on this site and I'd firstly like to apologise for my spellings. I am in the UK and have a 4 year old son who was diagnosed last summer with Coeliac disease. We struggled to get any kind of help for why our son wasnt thriving and at 3 years old, the health profession classed him as malnourished. They told us he was just a fussy eater, even when we knew he wasnt. He was never actually physically tested till last year (at different hospital with different authority - ie. second opinion). In the first two years of his life, he saw dieticians, had messy food play, for children who were frightened of eating, speech therapy, because he wasnt eating and therefore not using the muscles in his jaw and so mainly grunted. To cut a very long story short, I took him for a second opinion at a different hospital and from then on it took another year to get a sort of diagnosis. He had lots of tests for hirschsprungs disease (he has chronic constipation) , cystic fibrosis (twice), Coeliac disease (3 negative blood tests, 1 weak positive) and biopsies. The biopsy came back negative but when he came out of hospital and had a follow up appointment a week or so later, they told us that the blood test was a weak positive and so he should try the gluten free diet. Within Joshi being on the diet for a short time his weight increased dramatically very quickly and so they concluded that er yes he did have coeliac disease. I have always been led to believe that in UK we could only be classed/diagnosed coeliac with a positive biopsy. I am so glad (if thats the right term - sorry) to see that so many are in the same position as my son. I've always felt that his diagnosis wasnt quite right. But I'm a lot happier now that I've seen your postings. I've always known there was something actually wrong with our son and not that he was a fussy eater. Joshi is 100 times happier now, no pain like he used to have, he talks all the time, energy coming out of his ears and his character is blooming into a little comic! Joshi still struggles with the chronic constipation (this is also something I didnt think that was that common - until I read your postings) so much so that I clean 15 to 20 pairs of underpants every day. Its hard not to show my frustration. He is scared to use the toilet, so he does it in his pants.

Joshi starts school in September and I am doing my best to try to get the levels of laxatives right, so that he isnt constipated nor incontinent, not easy and I'm not sure I'll do it for September.

I also run the local childrens section of Coeliac UK voluntary group and have 50 children on my list. This is as much as for the other parents and children as for myself. Its a scary condition to have, especially in the beginning, before diagnosis. I am also very glad that I've found your site.

best regards

justinex

[TCA]

Justine,

Welcome to the site. I'm glad your son is so much better.

I had a foster son for a while who had lots of accidents. After lots of testing, they found that he had an impaction about the size of a grapefruit. he was on both laxatives and enemas for a month to get it out and now he's normal. It was really hard for him because he was a teenager and had always had the problem. His parent's woudn't take him to the doctor, though. He was terrified of going to the bathroom as a child because the house was infested with rodents and he didn't want to go in there by himself. Its was soooo sad. He came a long way at our house and is still improving. I just wanted to mention it in case an impaction could be part of your son's problem.

[Guest Justine]

TCA

Thank you for your message and yes Joshi did have impaction last summer, before we got the diagnosis. They cleared him out under GA, which must have been absolutely lovely. I wonder if he is going the same way again. Do you or anyone else know if constipation is common in celiac disease? And if it is, then why hasnt it gone now he is on his diet? I actually wonder if he has just rubbish bowels as well as the celiac disease? I dont know if there are any tests to confirm this.

I suppose there is always someone who is going through a tougher time than ourselves but I wonder when the problems associated with his condition will end. Being in the UK I find that because we have the NHS (and on the whole its great and we have had some bad but mainly good help and treatment) I have to fight for everything and just keep on chasing doctors/paediatricians etc up. I cant even go private now, for my son as his condition is an existing one so it would make no difference.

Thanks again for your comments TCA. I do find reading what others have to say keeps me going....

best wishes

justinex

[Mom2six]

I am roughly in the same shoes. My 18 month old daughter has been plagued with chronic D and an itchy rash including a terrible diaper rash, plus failure to thrive (she weighs 18 lbs) and late development. Plus she has been clingy, fussy, etc since I weaned her at 11 months. We went to an alergist then a Ped GI who ordered blood work. The only thing that came back was a zinc deficiancy. He said it could still be celiac and the zinc could be secondary to the celiac as that is often a common deficiancy for celiac patients. She has been gluten free for 2 weeks-- since then her D is just about gone (though she had a bit a of a set back a week ago when there was gluten in the spaghetti sauce) and her rash has almost cleared up. She is also walking-- just like that. I want to take her in weigh her because she feels chubbier already. I find that it is too much to call it a coincidence. He wants to do an endoscopy but I am not sure I need that to keep her on the diet. I am commited to keeping her on the diet because we see so much improvement. Whether it is labeled Celiac or not, she is a different baby. Hope that helps some.