Confused About Son's Diagnosis (Or Lack Of!)

[yogatwinmom]

My son is 8 years old. When he was 5 he started having major GI issues. He was having severe reflux, vomiting that eventually became daily and severe constipation and "D". At first his symptoms were sporadic so we just assumed he had a virus, he was in preschool after all! When his symptoms became more frequent and a few trips to the ER for abdo pain we sought out a GI ped specialist. It took us several months to get in but when we did they did a barium X-ray, bravo test for reflux and an endoscopy but NO bloodwork. At the time I knew nothing about celiac disease so didn't push for the blood test. The GI team at the children's hospital said he had reflux (duh!) and sent us on our way and put him on Prevacid. Meanwhile he's still getting very sick!!! There were times that he would just lie on the bathroom floor wailing in pain, it was so awful.

So after the useless GI appt we had a followup appt with his allergist. I was telling him all that was going on and he did an IGG gliadin antibody test which came back abnormal and elevated. He said to go on a gluten-free diet immediately. I went back to the GI with this information (it took a few months again to get in) and they said well that test means nothing and ran a celiac panel. Well of course it came back negative because he had been gluten-free for several months! She then had the gall to tell me that I didn't know what I was getting myself into putting him in a gluten-free diet and that it was a lifelong commitment. GAH!

So here we are three years later without being under the care of a GI dr. We follow an extremely strict gluten-free diet and he's doing great! He plays sports, does excellent in school and is happy. He does however still get sick every once in awhile (probably at least 2x/month) either with reflux or vomiting.

What bothers me is that we don't have a true dx for him. His symptoms(for the most part) stopped within a week of going gluten-free.

An additional note he was BF'd as a baby but when we started him on formula he would get so so sick! When I switched him to the rice based formula he was much much better (no wheat in it)

We have an appt with a new GI peds guy that came highly recommended so maybe he can help. Do you think I should bother?

I'm just frustrated that I didn't know more at the time!

Thanks for reading.....

[mommida]

Go to the appointment.  Explain how the testing was screwed up from the first doctor, fixed by the allergist, and how his health is now on a gluten free diet.

 

This doctor may have the sense to give you a "probable" Celiac diagnoses, can do further testing to confirm or rule out other disorders, and can be a contact if you need emergency care.

 

I would not put much faith into genetic testing for Celiac, but it is the only testing that can be done on a gluten free diet.

[yogatwinmom]

Go to the appointment.  Explain how the testing was screwed up from the first doctor, fixed by the allergist, and how his health is now on a gluten free diet.

 

This doctor may have the sense to give you a "probable" Celiac diagnoses, can do further testing to confirm or rule out other disorders, and can be a contact if you need emergency care.

 

I would not put much faith into genetic testing for Celiac, but it is the only testing that can be done on a gluten free diet.

I didn't even realize that there was genetic testing for celiac. Interesting!

I'm just infuriated with his mismanagement of care and wish I knew then what I now know.

[nvsmom]

The AGA IgG is positive only in those who have a gliadin intolerance. It is possible to get a positive AGA if one have non-celiac gluten intolerance (NCGI) as well as with celiac disease. All other celiac disease tests detect antibodies that (attempt to) do damage to the small intestine, and doctors only call it celiac disease if they have proof that villi damage has occurred.   I am glad you knew enough to keep him gluten-free and didn't listen to the medical establishment that supposedly knows better than us.

 

I agree that you might as well go to the GI appointment and explain what happened. It will give them a chance to check him over and see if his lingering problems are still caused by celiac disease or something else that can be helped.

 

Good luck!  

[mommida]

Genetic testing can only tell if the patient has the known genes associated with Celiac.  It is NOT a diagnoses.

 

Some reports have gone around the internet that Celiacs have a higher occurance of H. Ployri. and connections to other disorders.  At this point, I think it would be the best to work with a doctor and make sure other issues are ruled out.

 

Keep a food journal to see if it is another "food intolerance".

[yogatwinmom]

So I've been keeping a food journal and he's gotten sick 2x this week. Once after a PB sandwich on gluten-free bread and once after eating gluten-free tater tots? We were on vacation during the PB sandwich incident so I'm wondering if its cross contamination? We were staying in a condo and I toasted the bread in the condos toaster. Stupid I know but didn't think about it until later.

We have his GI appt with the new dr tomorrow.

[T.H.]

Cross contamination might be possible, yeah, especially with the toaster. My father tends to get sick whenever he uses hotel toasters, but he always forgets and does it again the next year he goes on a trip. :-P  

 

You might also want to check and see if the gluten-free food in question contained xanthan gum. Some folks have gastro trouble with xanthan gum.