Dx Question - Both Biopsy And Blood Inconclusive?

[lkelli]

I have a question. My son is two and has had feeding issues. He has severe constipation and severe food refusal. After some major improvements he made a back slide and we did a endoscopy expecting problems with the espohogus and stomach (reflux or allergies), instead the lower intestine came back imflamed with some sorta damage to the villi. But for some reason the GI Dr said it did not look like celiac. We did a blood test which came back negative , but not accurate bc of low IGa ?. But, he was positive for the genitic markers for celiac. I have since found out that my mother in law has celiac (she never thought it helpful to tell us) she does not adhere to the diet, she also said that my husband had celiac as a child. My husband has recently had some gi issues, and has developed lactose intolerance. We are in the process of getting all of us tested (including my 4 year old).

My GI dr says he is not convinced it is celiac but we should try the gluten free diet and see if it improves his eating?

Your thoughts! If my husband comes back positive then it is more likely my son has it. I want to make sure I should go gluten free.

Thank you for all your help.

lkelli

[Ursa Major]

Oh, how is it possible for doctors to be so ignorant!

First, welcome to this board, I hope you get the answers you need here.

People DON'T outgrow celiac disease. Your husband still has it and doesn't need to be tested again. He needs to be gluten-free for life.

Your son obviously has it, too. If there is damage to the villi (in the SMALL intestine, you don't have villi in the large intestine), he has the genes, your husband and his mother have it, then there is no doubt whatsoever that he has celiac disease. Forget about further testing for him and put him on the gluten-free diet immediately! The same goes for your husband.

And since two out of four people in your family will need to be gluten-free (and your mother-in-law should be, too, unless she insists on dying of intestinal cancer ahead of her time), you might as well make your whole house gluten-free. If your older son has issues, they may just go away as well.

I have to get ready for an appointment and need to go. I am sure others will soon come and give you more advice. All the best.

[Guest nini]

I agree 100% with Ursula, You CANNOT outgrow Celiac, if your husband was dx'ed with it as a child, he still has it. Plain and simple. You do not need any further testing of anyone with that family history, just get your husband AND your son on the gluten-free diet immediately. If you go through testing all you will do is increase their risk of being denied both health insurance coverage AND Life insurance, don't think it can't happen, it happened to me and lot's of others on this board.

Dr.s used to believe that Celiac was only a childhood disease and that people outgrew it, all the new research indicates completely the opposite, It can go into remission like stages throughout your life but eventually it catches up with you if you continue to eat gluten.

[Willow5]

I have a 2 yr old also and she is very sensitive to gluten. We had her off of gluten for a few months then let her have a few meals of pasta and breads and she got so severily constipated that she began rejecting meals and throwing up. Back to gluten-free and after a few enemas and a week of gluten-free, she is now doing well again with regular BM's. I have not gotten her officially tested but - my mom has celiac, I have some high blood results, my son has some high blood results and issues with constipation/encopresis. We are in process with gene testing. All in all, my daughters response to gluten has been the most convincing evidence to the need for gluten-free that I have seen.

Nan