Inconclusive Tests

[LMM]

My 14 year old daughter is in the process of testing for Celiac. Her blood work panel IGA and endomysial came back positive. Her scope biopsy showed no damage. Dr. said the diagnosis was inconclusive and left it at that. We discussed possible gene test but said I may want to try gluten-free diet. My daughter, who is exhausted of feeling badly, really wanted to try the diet but the nurse told me this was unnecessary. We are trying the diet and are one week in. How long should it take for her to feel better and can she have Celiac with no damage seen? Thanks in advance for any help!

[AlysounRI]

It's frustrating isn't it?

Without a positive biopsy it seems that very few doctors will say that you have celiac.

The GI doc who tested me, when I was coming out of the endoscopy drug fog, I THINK, mentioned something like you don't have to go gluten-free. Had I been more compos mentis I think I would have lept at him. I had tried going gluten-free for a month before just to see how I felt and it made a huge difference. I went back to the gluten for the month before the endoscopy and felt truly awful. I've talked to him and told him that I am not going back to the poison and he says okay, even though he feels that I don't need to be gluten-free. I know better than he does

Both my endo. and my tTG test turned out to be negative. I am not sure I was back on it for long enough. I'll never know now because I am not going back. Going gluten-free has made a huge difference to me.

It seems like the same with your daughter. So many people on this forum have had inconclusive or negative tests. And yet eliminating gluten from their diets has made a world of difference. If it makes her feel better then she should do it. She's fourteen years old and she deserves to feel good and happy and healthy so she can be a teenager, not feeling awful because of undiagnosed/unconfirmed celiac or a gluten intolerance!!

Your daughter and you know better than any doctor. You do what you need to do and I hope it helps you. It sounds like you have had positive results already! So, really, keep going! And you've come to a good place to discuss this with others.

People vary in the amount of time they start to feel better. it's a very individual thing. So I hope your healing goes quickly.

Again, that's just my two cents.

~Allison

[sb2178]

4-5 days and I've started to considerably less joint and abdominal pain. Fatigue, mildly improved, but still nowhere near normal. GI tract is moving at a normal rate but absorption is not normal-- that'll probably take a while. GERD milder, but that varies normally anyway.

I think I was diagnosed pretty early on though. And most of my nutritional deficiencies were/are mild and treated reasonably well via supplements. A full glass of milk still is painful, but 1/3 cup is fine so see if lactose is a problem.

There are a couple of other threads on similar topics-- answers really do vary. 3 days to 6 months, maybe.

g'luck!

[Emsstacey]

I think that the fact that she is feeling bad is reason enough to at least try the gluten-free diet. If her body is producing antibodies (which you said she was positive)-- it is recognizing gluten as something foreign. The fact that her biopsy was negative is most likely that they did not biopsy in the places where damage is at or that she has not had this long enough to have serious damage to her villi. Either way, she should feel much better on a gluten-free diet if that is what is making her feel bad.

I would personally commit to several months on a gluten-free diet and reevaluate. Most likely, she will feel so much better that there will be no doubt as to the cause.

Good luck!

[LMM]

Thank you so very much for your replies. We are going forward with the gluten-free diet (learning as we go:) and she is beginning to feel better. She still has times when her belly is crampy and bloated but not constant pain from midmorning to bedtime. In my thinking the blood tests show evidence of Celiac, even if the portion of the small intestine they viewed in the scope did not show damage. I was just unsure if there was any reason she would need a firm diagnosis. The nurse seemed to think my idea of trying this diet was extreme but I figure, what have we got to lose?! We are one week in and her body is already feeling better. I wonder also if this is really too soon to see improvement. (14 year olds are known to be a bit dramatic) I can tell in many ways she does feel better. She was sooo frustrated with feeling lousy. Also a symptom question. She never has diarhea but was extremely constipated. This is also improving. Anyone out there with constipation? Thanks for all your help!