So The Verdict Is...

[amy31]

So the verdict is...that I do not have a definite diagnosis.

I had really been wanting something definitive. Some here will recall me posting earlier about my complete celiac panel, which included DGP (IGA and IGG), TTG (IGA and IGG), EMA IGA and total IGA.

Total IGA was normal and all celiac markers were normal except TTG IGG, which was 11, with the normal range 0-5. This test was taken 4 weeks after a 2-week-long gluten free experiment. The doctor said it was not a definite diagnosis but pointed in the direction of celiac disease, and advised a gluten-free diet.

In case that gluten-free experiment could have affected the test results, and wanting something more definitive than the TTG IGG, which seems to be viewed as not very definitive in IGA-sufficient individuals, I ate gluten for 3 full months, then had TTG IGA and DGP IGA retested. They still came back normal.

I had had a strange bout of sickness and was suffering insomnia, flu-like symptoms, loss of appetite, and cramps, so this prompted me to really want to rerun the testing. Immediately upon return from the doctor I went gluten-free and have been for the ensuing two weeks. I'm not feeling better than usual yet, but bathroom problems have largely resolved, although this problem was showing some improvement even before I went gluten-free so it is hard to tell.

I was and am determined not to go for the endoscopy, because I don't feel it is worth the huge cost in our circumstances. However I had really hoped for something definitive with the bloodwork.

It seems from what I read, that the TTG IGG still gives you a high chance of being celiac. However, I don't know if I'm celiac, and because I haven't really recovered yet I don't know if I'm even gluten intolerant!

I have no problem sticking to the gluten-free diet (no cheating), but because I'm living in a house with three people eating gluten, including a toddler and preschooler who need help with their eating at the table, etc., and because I'm tired, I'm afraid there is cross-contamination going on. I also do lots of flour baking/cooking for the rest of the family. And I'll admit that it is hard to be motivated about things like new cutting boards and wooden spoons, and leftover toddler food if it didn't seem to have contacted any crumbs (you get the picture!) as it would be if I could say, "I know I have a problem with gluten and I know this effort is worth it because I know I'm going to get better if I keep extremely cautious about this."

Also I wanted to know if my girls were in genetic danger, and without a diagnosis I'm not sure of that either, but I'm going to go ahead with testing for the older one, and a gluten-free trial for the younger one (still nursing), because they both have symptoms of possible intolerance.

So I think I just have to accept the lack of certainty and move on. I know a lot of you here have done that. I don't know, however, if I should consider myself very likely celiac, and do the diet and not look back, or consider myself not celiac and just try the diet for a few months, then challenge with gluten to see what happens.

[MitziG]

Ttg isn't 100%...but it isn't unreliable either. The positive indicated an immune response. If you don't have other autoimmune disease, celiac IS the likely culprit.

I had only a weak positive ttg. Nothing else. But a wildly positive biopsy with total villous atrophy. It took many months on the diet before I noticed improvement- a year and a half later I am a new person though.

In your shoes, I would say I am a celiac.

[amy31]

Thank you, MitziG, for your encouragement. I really do appreciate it!

Was your positive TTG and IGA or IGG, if you don't mind my asking? It seems like there is more confidence out there in the IGA, for someone who isn't IGA deficient, than for the IGG. When I called the University of Chicago Celiac Center, the lady that spoke to me thought that if I were a patient there they probably would not even recommend me to get a biopsy, with the blood result I had.

Anyway, after doing some reading I am determined to do better with cross-contamination. I moved the bread machine and flour bins down to the basement (I have to make bread for my family and also my parents) so there won't be flour flying around in my kitchen. And I'm going to be more careful with the children's food too.

[eatmeat4good]

Thank you, MitziG, for your encouragement. I really do appreciate it!

Was your positive TTG and IGA or IGG, if you don't mind my asking? It seems like there is more confidence out there in the IGA, for someone who isn't IGA deficient, than for the IGG. When I called the University of Chicago Celiac Center, the lady that spoke to me thought that if I were a patient there they probably would not even recommend me to get a biopsy, with the blood result I had.

Anyway, after doing some reading I am determined to do better with cross-contamination. I moved the bread machine and flour bins down to the basement (I have to make bread for my family and also my parents) so there won't be flour flying around in my kitchen. And I'm going to be more careful with the children's food too.

You might want to wear a mask if you are going to be baking with wheat flour. It is so easily airborne that you can easily breathe it in and make yourself sick by swallowing some of it in the form of airborne particles. If you really think you are Celiac, you might not want to keep baking with wheat flour. Cross contamination is a huge issue anyway, even without wheat flour in the house. I would recommend buying their wheat bread or baking gluten free bread for everyone in the house. It would eliminate the biggest risk you have. Then you can start looking at your cutting boards, baking pans, and cupboard shelves, and colander. It's a huge task to get rid of the sources of gluten, but well worth it in the end if that is what is causing you to feel lousy. I don't know anything about the testing, but I do know about breathing in wheat flour.

[MitziG]

Mine was ttg IGA. But my doctor totally dismissed it, even tho my son was just dx with celiacs. Because I had atypical symptoms, mostly fatigue, he didn't think I could have it. But I insisted on the endoscopy, and the GI dx me on the spot, before biopsies came back, due to years worth of visible damage. So blood tests only tell part of the tale.

The above poster is correct though- baking with wheat flour is a bad idea. The dust goes everywhere, contaminating every surface, and the likelihood is that you will have continued exposure to gluten. As long as that happens, you will have a hard time recovering.

[tarnalberry]

My husband and toddler are gluten free at home, for the most part. I know I sound mean, but the family can adjust!

[amy31]

Thank you all for your perspectives on flour and contamination. I like the idea of a mask. For now I have the bread maker down in the basement and I guess I will see how that goes. I may have to change that arrangement eventually too.