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New Here And A Question

melody-m

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melody-m Newbie
melody-m
Posted

Hi everyone! We suspect that my four year old son has celiac, and he is scheduled for a ped GI visit on Jan. 8th. He has been gluten-free since mid-October, and we've seen a huge change in his behavior (finally cheerful and happy again), and in his bathroom habits (normal again). The doctor's office won't tell me whether or not to put him back on gluten right now, because the first visit is just an interview, I guess to see if they want to do testing. He has had no testing at all done yet - we (dh and I) just realized it could be a gluten thing since I have several relatives with celiac-type issues, and we put him on a gluten free diet to see if he improved. He did!

OK - to the question! Should I put him back on gluten now to get a head start for the testing, or wait until the evaluation visit?

Thanks for your responses! I love the site, and especially the message boards. This is all new to us.

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happygirl Collaborator
happygirl
Posted

It mainly depends on if you want a firm diagnosis or not (not what the doctor wants!!!).

if you want a potential diagnosis, your son would have to be eating gluten for a few months to have accurate tests. even then, they aren't 100%.

if you dont want the dx, and the positive dietary response is enough of an answer...then that is your answer.

Make sure you see a doc that specializes in Celiac---otherwise it will often be useless!

welcome to the board!!!!!!!!

Ursa Major Collaborator
Ursa Major
Posted

Hi Melody, and welcome to this board.

Are you sure you really want to go through with official testing? You would have to make your son sick again to the extend of destroying his just-healed villi, just so a doctor can tell you that he can't tolerate gluten (which you already know, anyway).

After being gluten-free for several months, it may take up to a year back on gluten to get a positive biopsy. You could do permanent damage to your son doing that. You could set him back in many ways, including brain development, physical growth, mental growth, speech, general maturity, he could become depressed, moody, violent...........the list goes on.

Really, you made the wise decision to eliminate gluten, and he got well. Testing needs to be done (if it's desired) BEFORE going gluten-free. To do a 'gluten challenge' is to torture the poor little guy needlessly, and you might still get false negative results.

It is the same thing as telling a diabetic that he needs to eat loads of sugar and carbs, to see if he is really, truly diabetic. Would a doctor order you to do that to your kid if he was diabetic? Of course not, it could kill him. It is just as unethical for doctors to tell you to put a kid back on gluten who got well without it, just to prove he will get sick again.

I am sure you have had times were your son got 'glutened' by something inadvertently, and got sick. That is the true test. A gluten-free diet makes him well, and if you reintroduce gluten, he gets sick again. Please leave it at that. My heart aches at the thought of a little child made seriously ill again, just so he can have an 'official' diagnosis. If you want to have something more solid, please consider testing through Open Original Shared Link. Their testing is very reliable even up to a year of being gluten-free, and much more sensitive than your regular testing.

melody-m Newbie
melody-m
Posted
  • Author

Thanks for your responses! We tried one day back on gluten, and he was a mess (crying, tantrums, and tummy problems), so I guess that we'll just stay off for good. I do want him to have a diagnosis, especially since he's so young and it would be easier in the long run to tell pediatricians, etc. a definite diagnosis, but not at the expense of his health.

Thanks again for your help. I will check into Enterolab for testing.

Melody

Carriefaith Enthusiast
Carriefaith
Posted

You may have a few options. You could put him back on gluten, but I believe he would have to be eating gluten for at least 3 months. Your other option may be to get a gene test done.

girlfromclare Apprentice
girlfromclare
Posted

We are in a similar situation at the moment. Our son is also four (and a half) and has been sickly since birth. He used to cry all the time as a baby and as he got older suffered tantrums, poor appetite and generally unhappy. At age two we eliminated dairy from his diet and saw marvellous results after about six weeks or so when it was completely out of his system. The results were good from a gastro point of view - his stools were more solid for first time ever and had changed to from a creamy white colour to a more healthy brown colour but his moods were still horrendous. We were at our wits end!!! The crying was non stop every day - One minute he would be settling down happy to do something and all you would have to say would be hello mark and he would start crying - like someone had flipped some sort of emotional switch on and off - it got worse!! the moods turned to anger and lashing out especially at his little sister. Eventually a pediatrician suggested celiac disease and although his bloods came back negative, we were still convinced that this was indeed the problem - from reading the posts on this site and from scouring through literature and medical journals I realised that all of his symptoms including his reactions to dairy products could be attributed to celiac disease and I then realised (the penny dropped) that my husband had most of the gastro symptoms also including bone pain and fatigue and irritiability at times.

Anyway, the reason that Im going into all of this is because I can relate to your problem. We started the diet as soon as he had had the bloods done and regardless of the negative results decided to keep it up. the results were overwhelming - our little boy was happy again... and as a result, the whole house is a peaceful more calmer place to be... but most importantly he is smiling now... and is beginning to get colour in his cheeks for the first time EVER. We had to decide whether it was worth putting him on the diet again to get a biopsy done but now my husband is going to get one done instead seeing as we believe him to have it too... rather than put our son through the hell of going back on gluten. Basically its up to you. Its a very personal decision... I think myself that if you have already established that it is in the family and considering it is a hereidary disease, and he is showing the symptoms, I would take it as a given that he probably has it or at least continue with the diet for another while to see the results. If there are none, then perhaps something else is the problem but from what you have said i doubt it is....

Anyway, the best of luck with your decision... its a tough one. If my husband tests positive then I will know for certain that my son has it but really it doesnt make any difference because as long as the diet is making him improve so much, then he is staying on it!! For life...

Wishing you and your little boy the best

Liz (ireland)

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