Our Gi Experience

[Cath4k]

I know this isn't a religious board, but I have to start this post by saying that God answers prayers! I was really praying for the right GI and it seems we found him!

My 16 yo dd went to see him for an initial consult last Monday. The first good thing - he schedules an hour for an initial appointment, so he really has time to talk to the patient. I took in the Enterolab results and the first thing he said when he came in the room is that he never has patients come to him already diagnosed with a gluten sensitivity (which means he accepted the Enterolab results without question - he had also actually looked at the paperwork before he came in the room!) It was a great appointment. Everything he said was up-to-date and stuff that I had read here or elsewhere online. He explained that only 1-2% of Celiacs actually show villous atrophy when biopsied, so even though that used to be considered the "gold standard" for diagnosis, it shouldn't be.

He gave lots of advice on what it means to live gluten free (all of which I had already learned, but most doctors don't give that much detailed advice.) He talked about all the myths surrounding Celiac disease. It was just so obvious that he stays on top of all the latest research and information!

He did want to do bloodwork, but he said he expects that it may come back negative. He said if it does, that is good because it means my dd is doing a good job of eating gluten free. Because she felt that she had been CCed a few days earlier, he recommended that she get the bloodwork done the next morning because it may show up in the blood. He also recommended one lab over another on my insurance because "they do a better job of getting it right." He is testing for more than just the Celiac panel. He is also doing a full liver panel, checking pancreas function, sed rate, etc, plus he is looking for some possible deficiencies (B12, folic acid, etc.)

He did recommend an endoscopy and we are having him do it because he thinks her "reflux" symptoms may not be just reflux. He said there is a condition called "eosinophilic esophagitis" that used to be considered rare, but doesn't seem to be so rare after all. He told us about a doctor in a neighboring city who has done a bunch of research on it and has discovered it is much more prevalent than most doctors believe. Our doctor has started to test some of his reflux patients and has had 4 of them come up with this diagnosis in the last six months (and this is supposed to be a rare condition!) - two of those four were also diagnosed with Celiac!

Anyway, he said treatment for EE (which is an inflammation of the esophagus due to food allergy/intolerance) is treated differently than reflux so that is one reason for the endoscopy - to biopsy the esophagus. He also wants to biopsy her intestines and see what damage she may be dealing with. We were not going to allow an endoscopy just for a doc to feel that he could then tell her to go gluten free. (Duh!) But with the EE issue (which really seems to fit my dd's symptoms), it does seem reasonable.

The beautiful thing is that he does NOT want her to go back on gluten and actually encouraged us a few times in the conversation to get involved with the local Celiac support group. He said that he attends their meetings when he is able to and that he learns tons from them. Wow! It was also funny because he was saying how great it was that our pediatrician was so knowledgable about these issues (he assumed that the labs had been ordered by the pediatrician.) I had to tell him that we ordered the labs ourselves and he was impressed that we had figured it out.

He also suggested that I talk to my 2 yo's GI about his reflux issues (my 2 yo is on 45 mg of Prevacid per day and still struggles with reflux symptoms, particularly when glutened) and ask if he has considered EE. I know that GI has considered it because he mentioned that if the Prevacid didn't resolve my ds's reflux, then he may have esophagitis due to food allergy. This was back in early September before we figured out the gluten link, went gluten free, and then tested through Enterolab (all four kids are gluten intolerant, three are casein intolerant.) I will definitely explain everything to my 2 yo's GI at our next appt. with him.

My other two kids (12 yo and 4 yo) also exhibit signs of EE in relation to gluten (and possibly casein in my 4 yo), so I will talk further with the doctor about where to go with my other kids after we get through everything with my oldest.

My dd also got biopsied today at the dermatologist for suspected DH, so we will see what will come of that.

I am so grateful that we found this doctor! I just want to encourage you all that good doctors who stay on top of the latest information and respect their patients really do exist! I wasn't sure it would be worth it to pursue help from a doctor because the cure is gluten free and we can do that on our own, right? But in my dd's case, she may have this other related condition which may require further investigation into food allergies if the gluten and casein are not the only culprits. He is also looking to see if she is facing any damage or deficiencies so we have a little guidance there. I have been wondering how I could determine what type of supplements my dd may need to help her reach optimum health as soon as possible.

Sorry for the long post!

Cathy

[Offthegrid]

Sounds like a great doctor!

What city do you live in, if you don't mind asking? The GI I went to was a complete jerk.

[Geoff]

Really pleased for you finding the right Doctor.

Gives me the encouragement to get out there and try and find one myself, I have been to my doctors today after suffering with a product that was being sold at my local gym, falsely advertised as gluten free, and god have I suffered this last week. Went to the doctors to see what she could do for me because now I cant eat a meal without running to the Loo, she diagnosed yogurt that I should take at least 4 times a day.

Some Doctors know nothing about our illness or even want to know I am so deluded by these so called professionals.

Lol Sorry going off on one then but it is good to see some are getting treated as we should

[ravenwoodglass]

Cath4K, it sounds like you really lucked out with that GI. He sounds like a real keeper.

Geoff, your doctor may not have been as out of line as you think. After being glutened by the product you were consuming your gut flora and fauna need balancing. Eating yogurt is the best way to do that without pills. I hope you are following her advice as that will help you regulate after your last glutening.

[Cath4k]

Sounds like a great doctor!

What city do you live in, if you don't mind asking? The GI I went to was a complete jerk.

I PMed you.

Cathy