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Doctor Says Definitely Not Celiac

Peta

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Peta Explorer
Peta
Posted

Hi All,

Took my son for his appointment with the specialist.

She assured me that my son does NOT have celiac, and proceeded to check for other causes for his symptoms.

She was a specialist and is very informed on celiac. She said that although he may develop celiac at some later stage (or may not) that he definitely did not have it at present.

She suspects he has an infection in his stomach, which explains his abnormal blood count and many of his symptoms (similar to celiac symptoms). It may have been that way for months, or even a couple of years, as the acid in his stomach does not allow it to heal. She has a few courses of action to try, and we are beginning with the simplest first. If this is not successful then they will do a biopsy next.

I wish to thank all of you who took the time to answer all my questions when I was trying to work out if Celiac was my son's problem. Your answers were always interesting and informative.

Hopefully the doctors diagnosis is correct and we are on our way to a healthier boy!!

Best of luck to all your Celiacs, and Gluten intolerant people... it is a hard road but hopefully your persistence will lead to a happier, healthier life.

Thankyou,

Peta

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debmidge Rising Star
debmidge
Posted

Hope your son will be feeling better very soon.

Keep in mind that he would have potential for active case of celiac if as you say may develop it at a later stage. Since celiac can "arrive" stealthily you'd be unaware of it's existence. Perhaps in an effort then to stay healthy when and if that happens and to instill the method of eating gluten free a gluten-free diet from now isn't such a crazy idea.

I am not certain about childhood celiac, but if others too feel that an inactive potential celiac should also be on gluten-free diet, please indicate that. I am just afraid that in a year or more from now the child could have a "trigger" and Peta would be back to "square one." Ounce of prevention worth pound of cure is the thinking here.

Best wishes.

D.

Guest cassidy
Guest cassidy
Posted

Good luck! I had 3 gi docs tell me that I definitely didn't have celiac. I hope you figure out what is wrong and your son gets better. Just please keep this in the back of your mind, if nothing else works, the diet is painless and free to try.

GFBetsy Rookie
GFBetsy
Posted

Peta -

Best of wishes as you continue to research . . . I hope you soon find the answers that will help your son heal.

ravenwoodglass Mentor
ravenwoodglass
Posted

What tests has she done? They are notoriously unreliable on young children and even some adults. At times considerable damage can be done to the brain and the childs growth and health before a positive blood test is achieved.

Have you tried the gluten free diet for at least a few weeks? What was the outcome?

What course of action is she proposing BEFORE she will biopsy? Long term meds?

In My opinion you should do 2 things at the minimum before accepting this, one and most important you should put him strictly on the diet for a while, two you should consider enterolab testing if you haven't already. You should also consider asking for them to scope him now while he is still eating gluten or get a second opinion from another ped GI before just accepting that gluten is not a problem.

Good luck with whatever course you decide to take.

rez Apprentice
rez
Posted

Good luck Peta. Do they think it's H Pylori? I'm glad you found a good doctor. Good luck and keep us posted.

Peta Explorer
Peta
Posted
  • Author
Good luck Peta. Do they think it's H Pylori? I'm glad you found a good doctor. Good luck and keep us posted.

Yes, she used that word in amongst all the talking she did? Do you know anything about it?

Peta

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Mtndog Collaborator
Mtndog
Posted

H Pylori is the bacteria that causes ulcers I believe. I think it's treated with antibiotics.

I know other people have said it, and I don't want to disrespect your doctor if you have faith in him/her but I had 2 GI's, one who was very familar with Celiac say that it was definitely NOT celiac too. They put me through a gazillion tests from a CT scan to HIV to all the hepatitises, a biopsy, more blood than I cared to give away. In the end, guess what? It was celiac.

If your son doesn't get better and you don't get the answers you want, like cassidy pointed out, the diet is free and not harmful.

I wish you both the best!

celiacgirls Apprentice
celiacgirls
Posted

I am another one who was told my child did not have celiac by 2 different pedi GI's and a pedi.

While my child may not have celiac, she is definitely gluten intolerant at least.

So I agree with the others. If this doctor doesn't find anything else definitely wrong, I would keep celiac/gluten intolerance in mind.

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