Gluten Challenge

[debbie-doodles]

My daughter has been diagnosed with celiac disease. She is now 3 and a half and was diagnosed last april. First she had the test, which came back negative, but I was told that it could come back negative in many kids. So then she had a biopsy. The doctor thought she had it, so she made me put her on a gluten free diet. We did see improvement, but she also has really bad reflux and so if she skips a pill for that, she's very sick (similar to when glutened). so then after going gluten free for a little over 7 months, he did another biopsy and said he was really sure she had it because the damage in her intestines had gotten better, etc. Now I saw him today and he said he is still trying to "rule out" celiac disease as what she has. There is a strong family history for it (a great uncle that had it and several great aunts that have wheat intolerance, but have never actually been tested). Now the doctor is ordering tests....Celiac Disease Panel. He said its to see if she has the gene for celiac disease. He also wants my husband and I tested to see if we carry the gene. Then he said if those come back positive, he wants to do a gluten challenge and that will tell us if she really has it. Isnt' that a bad idea? Isn't it feeding the very thing to my daughter that we've been trying to avoid? How much proof does this guy need? Should I refuse to do it? If the initial tests for the antibodies came back negative, then how does he know it will come back positive this time? What is he trying to accomplish by doing this?? I need help!

[ravenwoodglass]

My daughter has been diagnosed with celiac disease. She is now 3 and a half and was diagnosed last april. First she had the test, which came back negative, but I was told that it could come back negative in many kids. So then she had a biopsy. The doctor thought she had it, so she made me put her on a gluten free diet. We did see improvement, but she also has really bad reflux and so if she skips a pill for that, she's very sick (similar to when glutened). so then after going gluten free for a little over 7 months, he did another biopsy and said he was really sure she had it because the damage in her intestines had gotten better, etc. Now I saw him today and he said he is still trying to "rule out" celiac disease as what she has. There is a strong family history for it (a great uncle that had it and several great aunts that have wheat intolerance, but have never actually been tested). Now the doctor is ordering tests....Celiac Disease Panel. He said its to see if she has the gene for celiac disease. He also wants my husband and I tested to see if we carry the gene. Then he said if those come back positive, he wants to do a gluten challenge and that will tell us if she really has it. Isnt' that a bad idea? Isn't it feeding the very thing to my daughter that we've been trying to avoid? How much proof does this guy need? Should I refuse to do it? If the initial tests for the antibodies came back negative, then how does he know it will come back positive this time? What is he trying to accomplish by doing this?? I need help!

If she has been gluten free the celiac panel tests will come back negative whether she has it or not. You do want to check everyone in the family who is still eating gluten with the panel but you can't really trust the results. The gene tests could be worthwhile but there are some who feel all the genes for celiac and gluten intolerance have not been found. Some of us just test negative no matter what. IMHO As far as the gluten challenge goes I would only do this if I had doubt. And if my child reacted at all that would be the end of the challenge. As far as the reflux goes have you eliminated dairy products? Many with celiac have a hard time with dairy. Some are able to tolerate it after it heals. The gluten type reaction you are seeing when she misses a pill may be withdrawl symptoms of a sort. Is there a possibility of talking to her doctor about weaning her off of these, even if you need to replace it with something else?

[AndreaB]

From what I understand by reading others posts is that children often come back false negative. The gene test would be a good idea. We just had the gene test done through enterolab and found out we all have 2 genes. 2 of us have 2 celiac genes and 2 of us have 1 each of celiac and gluten sensitive.

If she had a positive biopsy why does he need more proof? Have you asked him what else he thinks it could be if not celiac?

If you are eating soy that could still be causing problems with her intestines.

[key]

My son also had negative blood work when he was a year old, but at fourteen months we just took him off gluten. WE all saw the difference in him. Night and day! I think that if her intestines looked better now, then you know that gluten isn't good for her. I wouldn't do it if it were me. I don't really know what he is trying to accomplish, but the damage that it will do, will last awhile and set her back. It irritates me just to hear a doctor even suggest this.

ARe you sure she isn't getting any gluten anywhere? My friends son that doesn't have celiac (they don't know this for sure), but he is well over two and still has reflux. They don't know what causes his, but he is on meds all the time for it.

Like someone said, what about dairy?? Soy was giving me trouble. You may try eliminating these two at different times. Has she gained weight gluten free?

Obviously you have to do what is comfortable for you, but I wouldn't do it and I would maybe even find a second opinion if you are still concerned about the reflux.

Monica

[Guest greengirl]

I think it's ridiculous that the doctor wants to put her through a gluten challenge now after she's been gluten free for 7 months! He saw improvement in the intestines and he wants to risk damaging them again just to be sure?!! Why not focus on maintaining and continuing the healing and monitoring her nutrient absorption? It really irks me that doctors doubt that dietary changes could be responsible for improvement if blood test numbers don't confirm the condition. Don't they know about the many, many people that blood tests miss!? When will the textbook knowledge that doctors live by catch up with what's going on in the real world?

I realize your post is a couple weeks old, so you may have made your decision by now. But if not, I would suggest getting a second opinion and be thankful that your daughter is healing! Good luck!

Christine

[Satori]

I would refuse to do it, you've seen the improvement and it could take several months to see the damage in the intestines again. Why put her through that misery just for the GI's benefit? She will surely rebel in her teens and you can test her then.

[Guest nini]

I would absolutely refuse to do it. If there is still some ongoing tummy issues, look into other intolerances as well. Like soy or dairy. If her biopsy was positive and then a follow up biopsy showed improvement after going gluten-free, she absolutely 100% has Celiac, just because her blood test results didn't concur with that is irrelevant. My daughter's blood test was negative and no biopsy, but 100% positive dietary response so she absolutely has Celiac... regardless of what blood tests show... (I'm still not convinced her Dr. even knew what he was talking about. He didn't do the complete Celiac panel)

after being gluten-free for 7 months a Celiac panel would absolutely come back negative, so I'm with you... what is he trying to prove?

the biopsy is 100% conclusive when it is positive end of discussion!