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We Have Our Biopsy Results.

KeegMiles

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KeegMiles Newbie
KeegMiles
Posted

My 2.5 year old had an endoscopy two weeks ago. We have slowly started eliminating gluten since then.

He had an appointment with our pediatric GI yesterday. She said that the biopsy was negative. But the gene & antibodies had showed up on his bloodwork prior to the biopsy. She told me he didn't have Celiac. I am convinced he does and that we caught it early enough that he hasn't had damage or much damage yet. I have been reading what you guys say, & I could be right. He also had a diagnosis of eosinophilic esophagitis. I kind of feel since he has that diagnosis that they have stopped looking at what else could be wrong. He has so many symptoms & a lot of times when you are reading about Celiac online, you have to wonder if they studied my child witout asking.

My other son had the celiac panel run by his pediatrician. His IgG came back at 30 so they are referring us to the pediatric GI. He doesn't have as many visiable symptoms, but he is extremely small. Like <5% for height & <25% for weight. He has been falling off his growth curve since around 9 mos, when we started table food. Should I gluten load him before his appointment next Tuesday since they will probably rerun the blood work?

This really is a whole new world.

Thanks,

Lesley

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ravenwoodglass Mentor
ravenwoodglass
Posted

False negatives on endoscopy are not uncommon. You child has the genes and more importantly is forming antibodies. He is IMHO celiac. After your other child is done with testing get them both on the diet strictly. Since celiac is genetic make sure both parents are also screened (even if you don't think you have symptoms) and perhaps make the house gluten free afterwards.

Mom-of-Two Contributor
Mom-of-Two
Posted

IMO, 2.5 years old is quite young to have significant damage on an endoscopy/biopsy. If he has positive blood work, I would stay gluten free and see what symptoms resolve. My kids get their blood work next week, and if it is positive I will not be doing biopsy- because I have celiac, we will just do gluten free as a family, for us there is really nothing to discover by making them undergo a biopsy, since there is really no mystery involved!

Gluten free could change a lot for him, and you will have your answers without waiting for a dr to tell you what you already know :)

rachelh4207 Apprentice
rachelh4207
Posted

I highly recommend the book "Healthier Without Wheat: A New Understanding of Wheat Allergies, Celiac Disease, and Non-Celiac Gluten Intolerance. By stephen wangen. It really really helped me to see that doctors do not know all that much about celiac/gluten intolerance unfortunately. My DD is 2.5 and had a negative Biopsy as well. But a great reaction to gluten free diet. regardless if her's is gluten intolerance or celiac, It is still very damaging to her to have gluten so we are following a strict gluten free diet for her.

mamaupupup Contributor
mamaupupup
Posted

False negatives on endoscopy are not uncommon. You child has the genes and more importantly is forming antibodies. He is IMHO celiac. After your other child is done with testing get them both on the diet strictly. Since celiac is genetic make sure both parents are also screened (even if you don't think you have symptoms) and perhaps make the house gluten free afterwards.

I agree 100% with this. We haven't gotten the final results back on our twins' biopsies, but I'm expecting the same false negative (and the GI has hinted at this in an email). My husband and I have agreed to go forward as if they have Celiac. I think positive genes+ttg results puts us at about 97% likelihood of celiac. You are not alone!

I'm personally mixed on the gluten loading thing. Noone has really been able to give me a solid sense of how much for how long...and both our girls really had a rough time when we loaded them for 2.5 weeks (we had been low gluten for a year prior).

Thinking of you all!

Sugar Bump Newbie
Sugar Bump
Posted

Hi all,

Im new to the Forum, not the disease.

My daughter 11 has been diag w/ celiac disease since 2008. We are experiencing a large host of other problems. I seek out the best med help I can. I have run into MANY road blks including the doctors labeling my daughters constant state of nausea/sickness as being in her mind!!

Getting to the point.....

Trust your instincts. I am finding that with my constant research that these well intended doctors cannot fully understand the scope of illness this disease can cause.

Good luck, I hope you guys feel good soon!

Francesca

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      26F!
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