Inconclusive

[gibsongirl]

I'm hoping for some help w/deciding upon how to proceed after inconclusive blood test-I don't want to have the endoscopy & biopsy for planning & financial reasons. My 7 year old son has celiac (negative blood, positive biopsy) & my 2 year old daughter (negative biopsy w.some flattened villi) doesn't tolerate wheat or high gluten foods well so my home is mostly gluten free of January-my children eat gluten free and I have been too just because it is easier to cook gluten free for all at home instead of making two meals.

I was tested a few weeks ago after anemia, vitamin D deficiency not responding to high dose supplaments (after 1 year my level is still around 12), thyroid problems, chronic fatigue, joint pain and major stomach issues that got better after being on gluten free diet for 3 months. My blood test was inconclusive as per my doctor because I have iG deficiencies (mine was around 11 with a normal around 40) but I had a high negative on the other celiac test, which she thought might mean I have celiac because I had been strictly gluten free for a few months and had less joint pain and saw almost total disapearance of stomach issues (diahrea, bloating, gas etc) after removing all gluten. The rest of my blood tests were all within normal limits. My doctor thought such low vitamin D and low iG levels were not cause for seeing any other doctor other than a gastro to have a celiac biopsy to confirm what she is feeling pretty certain is celiac but needs a biopsy to confirm-and for me to add gluten back into my diet for a few weeks before any biopsy.

I went away on vacation last week and ate cereal with oat & wheat flakes for breakfast and had a couple of wheat wrapped sandwiches during the trip. I don't know what posessed me to test for gluten tolerance while away in the Magic Kingdom with two children in tow. For days now I have been sick to my stomach, horrible cramping diahrea foggy, sore and just feeling really off, like a brain fog-and exhausted beyond words.

I am considering making gluten free choice based on the symptoms as much as the blood test since an endoscopy and biopsy is out of the question right now for financial, insurance & other reasons.

Has anyone here also made the same choice and feels good about it?

[GlutenFreeManna]

I have never had any of the tests. I self-diagnosed via an elimination diet. Now there is no way I could go back to eating enough gluten to test. Even a little bit makes me sick for days. I've decided I don't need a piece of paper (test result) to tell me what my body is already telling me loud and clear. You could do the gene test later if you were curious. Of course, that is not diagnostic, but with your kids having it you have a much greater chance of having it too.

[tarnalberry]

My blood tests were even more inconclusive than yours, but the dietary test (which is a very valid test) was quite positive. I never had a biopsy and don't intend to get one. I know that gluten makes me feel crappy, so why would I eat it?

[ravenwoodglass]

With two celiac children the chances of you, with your symptoms, having it also are IMHO high. I do think that you would benefit from doing the diet. Your 'challenge' recently has borne that out.

[sb2178]

I did choose to have a biopsy, which came back negative, but also had another round of blood work which came back as positive/equivocal. So the biopsy may or may not be helpful.

Based on a dietary response alone, I was choosing to go gluten free, but it was nice to have the blood work results in my record and for discussing with family. At this point, I don't think anyone could persuade me to do a full dietary trial. I will probably cough up the money for genetic testing at some point to help clarify overall risks for other complications, but since your kids have it, you almost definitely have the genes.

I'd say go totally gluten free. If you hate it and/or find no improvement, you can always decide to do a trial and additional testing later.

[Skylark]

I chose not to be tested. I figured out my gluten intolerance with an elimination diet because I thought I had food allergies. My doctor offered blood tests, but he really wasn't concerned about getting a firm celiac diagnosis if I was eating a celiac diet anyway. I really didn't feel like losing a month (plus recovery time) feeling crummy.

I don't really regret the decision, since I would be eating gluten-free either way. I'm a little curious whether I'm actually celiac but not enough to get sick over it. I might eventually cave and do genetic tests.

[mushroom]

I am 2.5 years gluten (and now many other things) free with absolutely no testing of any kind. Well, wait, I did have a stool/saliva test about six months after going gluten-free, just to check for parasites, candida, etc. My body was telling me what it did not want me to eat, and I obey. I just was not listening well all those other years.

You sound to be in tune with your body so listen to it. The piece of paper is sometimes helpful in dealing with family (if you have family that is disbelieving), but it should not be an issue with you since you already have two celiac children. Being that the disease is genetically based it must have come from somewhere and that somewhere is almost certainly you. If I were you I would call myself celiac and get on with a healthy gluten free life.

[Jestgar]

I also chose not to be tested. I sent my PCP a list of all the things that got better after I went gluten-free and she said "great! good job figuring it out!" A year or so into the diet I was seeing some doc (rheumatologist? don't remember) for assorted issues. He sent a Celiac panel despite me telling him I'd be gluten-free for a year. The results came back negative and my PCP said "great! your doing a good job sticking to the diet!". I really like my pcp.