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Confusing Results

Cindyp43

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Cindyp43 Newbie
Cindyp43
Posted

Hi, my daughter is 16 years old and they did the blood work to check for the Celiac antibodies which came back very elevated so then her doctor did a biopsy which also came back positive he said she was in Marsh 3 so he put her on the gluten-free Diet, we have been on it now about 2 weeks. He then sent her to do blood work to see if she has the Celiac gene, they called yesterday and said she was negative for the gene. So confused what does that mean, does she have Celiac or not??

Has this happened to anyone else out there?? It has been hard trying to eliminate gluten from her diet, she is very active.

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Jestgar Rising Star
Jestgar
Posted

There is no "Celiac gene". There are only certain genes that are more associated with the disease.

cassP Contributor
cassP
Posted

Hi, my daughter is 16 years old and they did the blood work to check for the Celiac antibodies which came back very elevated so then her doctor did a biopsy which also came back positive he said she was in Marsh 3 so he put her on the gluten-free Diet, we have been on it now about 2 weeks. He then sent her to do blood work to see if she has the Celiac gene, they called yesterday and said she was negative for the gene. So confused what does that mean, does she have Celiac or not??

Has this happened to anyone else out there?? It has been hard trying to eliminate gluten from her diet, she is very active.

wow... that would be confusing... try to not get distracted by nurses or any other medical professional including a doctor who doesnt fully understand Celiac & Gluten Intolerance.

there are 2 genes that are associated with Celiac- BUT there are so many MORE that the medical community just arent looking at yet. they've already started diagnosing Celiacs in Europe with OTHER DQ genes (NOT JUST DQ2 & DQ8). you'll meet MANY people on here with Celiac & Gluten Intolerance with DIFFERENT DQ genes.

the proof is in her elevated antibodies, her response to the diet- and her Small Intestine Damage! that's all you need- now, i am JUST learning about the term "Marsh" on this forum- but i am assuming that Marsh 3 is a pretty positive on the damage of the villi.

hope that helped- stay on this forum- people have a lot of crucial information that can help u :)

Skylark Collaborator
Skylark
Posted

Hi, my daughter is 16 years old and they did the blood work to check for the Celiac antibodies which came back very elevated so then her doctor did a biopsy which also came back positive he said she was in Marsh 3 so he put her on the gluten-free Diet, we have been on it now about 2 weeks. He then sent her to do blood work to see if she has the Celiac gene, they called yesterday and said she was negative for the gene. So confused what does that mean, does she have Celiac or not??

Has this happened to anyone else out there?? It has been hard trying to eliminate gluten from her diet, she is very active.

The so-called celiac genes are only risk factors, and people can be celiac without them. If she has a marsh 3 biopsy and antibodies, she is absolutely, positively celiac. Marsh 3 is serious intestinal damage and she MUST stick to the diet strictly. You need to impress on her the dangers of untreated celiac including osteoporosis, anemia, anxiety and depression, autoimmune thyroid disease, refractory sprue and intestinal cancers (rare but possible), and neurological problems. Neurological problems seem a little more common in folks on the board who do not have the DQ2 or DQ8 genes.

If she is very active, she needs to learn to make her own good diet choices, and to help you prepare boxed lunches and snacks to take along so that she can avoid all gluten.

ravenwoodglass Mentor
ravenwoodglass
Posted

Your post is one of the reasons I am not a big fan of gene testing. Do keep your DD on the diet strictly. The positive blood test and Marsh 3 damage trump the gene panel. I hope she is feeling better soon and do get your other family members tested.

Cindyp43 Newbie
Cindyp43
Posted
  • Author

wow... that would be confusing... try to not get distracted by nurses or any other medical professional including a doctor who doesnt fully understand Celiac & Gluten Intolerance.

there are 2 genes that are associated with Celiac- BUT there are so many MORE that the medical community just arent looking at yet. they've already started diagnosing Celiacs in Europe with OTHER DQ genes (NOT JUST DQ2 & DQ8). you'll meet MANY people on here with Celiac & Gluten Intolerance with DIFFERENT DQ genes.

the proof is in her elevated antibodies, her response to the diet- and her Small Intestine Damage! that's all you need- now, i am JUST learning about the term "Marsh" on this forum- but i am assuming that Marsh 3 is a pretty positive on the damage of the villi.

hope that helped- stay on this forum- people have a lot of crucial information that can help u :)

Thank you so much for your answers it helped a lot....

Cindyp43 Newbie
Cindyp43
Posted
  • Author

The so-called celiac genes are only risk factors, and people can be celiac without them. If she has a marsh 3 biopsy and antibodies, she is absolutely, positively celiac. Marsh 3 is serious intestinal damage and she MUST stick to the diet strictly. You need to impress on her the dangers of untreated celiac including osteoporosis, anemia, anxiety and depression, autoimmune thyroid disease, refractory sprue and intestinal cancers (rare but possible), and neurological problems. Neurological problems seem a little more common in folks on the board who do not have the DQ2 or DQ8 genes.

If she is very active, she needs to learn to make her own good diet choices, and to help you prepare boxed lunches and snacks to take along so that she can avoid all gluten.

Thank you this has helped it made no sense for her to be positive with everything else and not have this gene. One other question she has and continues to have mouth sores, right now she has three, a really bad one on her tongue and two on the inside of the cheek, will these start to clear up or is this on ongoing problem??

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cassP Contributor
cassP
Posted

Thank you this has helped it made no sense for her to be positive with everything else and not have this gene. One other question she has and continues to have mouth sores, right now she has three, a really bad one on her tongue and two on the inside of the cheek, will these start to clear up or is this on ongoing problem??

are they Canker sores??? because that is yet ANOTHER classic symptom of Celiac.. im assuming they will heal up after being gluten free for some time

cap6 Enthusiast
cap6
Posted

I so sympathize with your daughter as I also had terrible canker sores. Several at one time and they are so very painful. They did lessen the longer I was gluten-free. I did have a prescription for a numbing mouth wash that helped and sorry I don't remember the name of it, however, Please check out the ingredients First. I took it before I went gluten-free so do not know if it was a gluten-free medication but it might be worth checking out as it did offer some relief. I also drank a lot of chocolate shakes (Dairy Queen is ok)

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