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Well, We Got Our Prometheus Results...

Sesara

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Sesara Rookie
Sesara
Posted

Of course, all the serum tests were negative. I really wasn't psyching myself up for anything else, but it's still frustrating, since I feel certain this GI won't give us a diagnosis without positive results, given his "inconclusive" biopsy results.

However, we did get the genetic results as well, and they at least make me feel like we're on the right track. He is a heterozygote, according to his results, but he is DQ 2.5, which is the most common DQ2 combination for Celiac. Prometheus rates his likelihood of developing Celiac at 10x the normal population and lists him as Category 4 - High.

I feel that, given our suggestive biopsy results, with those genes, if he responds positively to a gluten free diet, it deserves a diagnosis, but we'll see what happens. I will definitely be seeking a 2nd opinion if his current GI is unwilling to diagnose.

We are 3 weeks gluten free as of yesterday, and in the last couple days, I do feel like maybe we are seeing an improvement in his diapers. Not that they're normal, but they've finally lost the sandy, gritty stickiness, and are vaguely formed. He is also showing signs that make me suspicious that a growth spurt is coming on. I feel like we are on the right track and I am hopeful that, when we meet with his GI in another 2 weeks, we will have some weight gain and height gain to show for our efforts. Obviously, that'll be good enough to convince me, regardless of what his GI says.

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Lisa Mentor
Lisa
Posted

I feel that, given our suggestive biopsy results, with those genes, if he responds positively to a gluten free diet, it deserves a diagnosis, but we'll see what happens. I will definitely be seeking a 2nd opinion if his current GI is unwilling to diagnose.

I agree with you. ;) Is there a family history of digestive disorders, or other autoimmune issues, as well?

Sesara Rookie
Sesara
Posted
  • Author

I agree with you. ;) Is there a family history of digestive disorders, or other autoimmune issues, as well?

Well, enough that DH and I both need to get tested, really. On his side, ulcerative colitis and late onset type I and II diabetes, and on my side, Hashimoto's thyroid and I have a *supposedly* unrelated disease called achalasia that is thought to be an autoimmune triggered esophageal motility disorder that has also been linked to DQ2 genes. I have a dr's appointment next week and based on my son's results am going to push for a Celiac plus panel to be ordered for me as well.

mamaupupup Contributor
mamaupupup
Posted

You are a great Mom!

I'll write more in a longer post one of these nights...

Based on my kids' diagnoses, I got tested. I had two sets of negative Celiac Panels (I was on a low gluten diet). I have done better off gluten, have two kids with Celiac, we all have DQ2 and DQ8. I decided to go to Dr. Harmon at UCLA for biopsies. Yep, I've got Celiac--my endoscopy was a Marsh 1. He has diagnosed me as Celiac, even with a negative blood panel. I think each person is different and each case should be treated uniquely.

Keep fighting for your son! :) I know you will. It may help if you have a positive Celiac diagnosis for another first degree relative.

Thinking of you!

faithforlife Apprentice
faithforlife
Posted

My Fam has same genetics-moderate, high, and very high risk genes. The 2 high risks DQ2 have celiac but doc says we should all be gluten-free. Doc also said with little ones it's hard to get a complete diagnosis but the signs can be the beginning of celiac, but could take a long time to be full blown! So, to me it sounds like that's where y'all are-and it's great to start the diet now! Why wait for more damage and disease?

Sesara Rookie
Sesara
Posted
  • Author

Well, our meeting with the dietician was very reaffirming. She basically told me that I am doing everything right in the way I am feeding him and her only recommendation was that we do allergy testing to make sure that there aren't other issues exacerbating his tummy problems. I have my first appointment with my new PCP on Monday, and while I had hoped that my son's GI office could get me a copy of DS's Prometheus results, of course they're too slow to do it in time. I can at least tell the doctor that he is positive for DQ2.5 and that I need a Celiac plus panel ordered and hopefully I can get bloodwork done there or set up quickly so that I can officially become gluten free and not have to worry that my colostrum is continuing to impede DS's recovery (he is still nursing a couple times a day at 22 months but I am 8 months pregnant and have no milk at present).

We also met with a new pediatrician for him today who seems much less intimidated by a Celiac diagnosis and I think will be a good fit for him. So fingers crossed, we can turn things around soon and find him gaining weight and having healthy looking poop!

mamaupupup Contributor
mamaupupup
Posted

You are super Mom! Congrats on nursing to 22 months and on your baby!!! I don't know how you're doing it all! Amazing!

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