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Would Someone Please Look At My Test Results?

Dru

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Dru Rookie
Dru
Posted

I started having problems in March of this year and my Dr did a blood test for celiac disease on June 13. The results were in the normal range for everything.

I finally got a copy of my results after the dietitian that I am seeing went to a training workshop on celiac disease and then told me that the blood tests I had done were not the right ones.

I have been gluten-free since I began an elimination diet on July 11 with the exception of testing oats on August 26-28. I have felt like hell ever since eating the oats and it has been a week since I last ate them. I have tested a number of other foods on my elimination diet and have reacted to corn, soy, peanuts, and caffeine. I also know that I am allergic to diary and have not even attempted to have any of it. I was beginning to think that the foods I have reacted to were my whole problem but none of them recreated all of my prior symptoms until I tried oats. I have been back in my own personal hell since eating those and it has made me think that maybe the blood test that my Dr did was too soon or that I might be one of those people who have a negative blood test and actually have celiac disease. I have to get over the oats before I can test wheat and barley, so I am still not sure that it is a gluten problem (I guess I might be allergic to oats) but I tested with oat flour and I would assume that it was CCed. Also, my symptoms got worse on the few days that I ate Lays brand chips, which I have since read are frequently CCed and not safe for people with a gluten intolerance.

So, I'm posting my blood test results below. I would appreciate any feedback that anyone has as to what to do next and how to interpret the blood test results. Are they too far into the normal range to even consider that I might have celiac disease? Is it possible that my Dr tested too soon after I developed symptoms? What else should I ask to be tested for? I know I have to go back to eating gluten to be tested any further, but I have to eat barley and wheat on my elimination diet anyway.

Test Results:

TTG antibody, IGA <3 reference range: <5 is normal, 5-8 is equivocal and >8 is positive

gladin antibody, IGA <3 reference range: <11 is normal, 11-17 is equivocal and >17 is positive

IGA serum 146 reference range: 81-463

The lab was Quest Diagnostics in Chantilly, Virginia (don't know if this matters or not)

Thanks for the help. I don't really understand what any of these results mean other than my Dr. told me that they were negative for celiac,

-Dru

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ravenwoodglass Mentor
ravenwoodglass
Posted

I am glad you found a good perdon to guide you through the elimination diet. If what you experienced with the oats trial was a gluten reaction it may take up to 3 weeks for you to get completely over it. Hang in there. I was one who doesn't show up in blood work but in my case all that was done was to tell me I was in the clear and heres some more pills. It wasn't until after years of useless blood tests that I had a savvy PT who was getting me in condition for surgery who nagged me to find an allergist to guide me through the elimination diet. I was at that point close to death after 15 long years of progressive pain and disability and daily painful D. I had lost all hope and suicide at that point seemed to be in my future if the doctors didn't kill me first with all the meds and tests. It did take a couple of months on the elimination diet to get to the point where I added back in wheat, if I had any idea it would have been the first thing I tested but I didn't. Within 6 months after that I had such a remarkable recovery that I had no problems getting the rest of the family to get tested. They all showed positive on the blood work. I have read that those of us who have the most severe damage, up to 30% of us, will not show on blood work. I don't remember why that is but I think the article was one that Scott put on the home page. Don't go by blood work, go by your response to it during the elimination. Hang in there, it is hard. Folks that have never done a true elimination diet have no idea how hard it is to just eat 4 or 5 foods that you most likely don't even like for weeks just to get to the point where you can add in suspect stuff. It will be worth it in the end though if gluten is an issue. I was still in the elimination diet on Thanksgiving the year I was diagnosed. The only thing I had added back was potatoes and I cooked a great dinner and could only touch the turkey and boiled potatoes. My family thought I should 'just skip it' for the day but in the end the wistful looks at the others food and the tears at the end of the day once I was by myself were so worth it.

dally099 Contributor
dally099
Posted

your doc should have tested you before you eliminated gluten, you can test negative if your not eating it. same with a biopsy can come up negative if you have taken the gluten away from your diet. i hope you have a good doc as the elimination diet is really the best indicator. GOOD LUCK!

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