Possible Diagnoses Of Cs

[Guest HannahCal]

I am very confused as well as frustrated. I had been having GI problems since a removal of the gall bladder in 1988. I had a endoscopy exam done last year when pathology asked about celiac disease. It was then that the GI ordered lab results which came back normal. However the problems continued and I went to see him in Feb. I also had found out that I have IGA defiency. He had decided that I should follow a gluten-free wheat free diet based on the symptoms and the biopsy. I have been following the gluten-free diet since that time and although some GI problems still occur it doesn't hurt to eat anymore. I just want a good answer to my problem and let me know if this is a good place to go for support. Right now I feel like I am in limbo.

[nikki-uk]

Hi HannahCal,

Sorry to here you're having a rough time.

If you have an Iga deficiency you could get a false negative on blood screens for celiac disease.

Regarding your biopsy,are you saying that they found no 'villous atrophy'?

If this is the case it could be that there is no damage yet,or,sometimes the place where they took the biopsy from has no damage ,but there are parts with damage in there,they just missed them.

Your doctors advise to start a gluten-free diet is common,especially if he suspects celiac disease,but can't find the proof.It sounds as if the diet has improved your symptoms,but I know it can be frustrating not having a definate answer.

As you have started a gluten-free diet,there would be no point in repeat biopsies yet,however you could ask your doctor if you could do a 'gluten challenge'.You would have to eat gluten for about 3 months prior to another biopsy.(Not for the faint hearted if gluten makes you really ill).

There are lots of people on this board who don't have an official diagnosis of celiac disease,but know they feel really ill if they eat gluten-and that's enough for them to follow a gluten-free diet.

If you have a good doctor who has an interest in celiac disease-you may want to ask for a 'gluten challenge'.Unfortunately they are few and far between.

I hope this helps,and you get some answers soon.

[celiac3270]

An IgA deficiency can make your otherwise positive test appear questionable or negative, which is why your doctor reconsidered after learning this. I am surprised, though, that if your biopsy showed damage, you weren't put on a gluten-free diet due to that. Anyway, it sounds as if your doctor made the right decision

[KaitiUSA]

Sometimes if there is no damage or only sporadic damage the doctor can miss it. Celiac can be triggered after surgeries so it is possible that you do have it. IgA defieciency can make an otherwise positive test come back negative. Have you had blood tests done for celiac? It sounds like the best thing to do is be on the gluten-free diet.

[Guest HannahCal]

Thank you for the support. Yes there is damage in the small intestine but I don't know excactly what that is. I had the test for celiac disease which were negative. He then told me that it was still a syndrome of IBS and post gall bladder problems and prescribed colisted. It didn't help much but I took it and ate Immodium like M and M's. It was only after he learned of IGA deficiency and high Ig something that he now sepects celiac disease.

[KaitiUSA]

If there is damage in the intestines and you have IgA deficiency and other tests high you are celiac. The damage is caused by the gluten. You need to be on a gluten free diet.