Inconclusive Test

[penguin]

Hi, I'm new. My dr put me on a gluten-free diet about a week and a half ago. I've had D and spells of horriffic abdominal pain for 2 or 3 years. Have had several blood tests (almost always anemic), an endoscopy (he was looking for esophogeal damage), an ultrasound, trips to the emergency room, and lots of general poking.

The same idiot dr that did my endoscopy put me on nexium, and after taking it for a month I called because I had the horriffic pain. His nurse told me I was taking it wrong, and wouldn't call me back after that.

New city, new internist. I like my dr, and I suggested maybe a food allergy. She did the celiac panel.

I had an inconclusive blood test so we're doing this (for 3-6 mos) to see if the diet works, and she doesn't want me to have an invasive biopsy if we can avoid it. Only one of my levels was high, to quote my Dr:

"Only your “gliaden IgG” was positive – please don’t get too hung up on the biochemistry – it’s not really pertinent."

Um, any thoughts?

[WGibs]

My gliadin IgG was the only high value on my blood work also. My doctor wasn't as good as yours and told me I was fine and should just take Immodium. I was desperate to feel better without popping pills, so I decided to try gluten-free anyway. I have had a very positive dietary response. I'm realizing now that, while I thought I had only been having symptoms for 6-8 months (chronic D during that time), but I actually was having problems for alot longer. I haven't felt this good in years. I had come to think it was normal to feel crampy and bloated after every meal, but it's not! I still feel myself bracing for the churning to start after I eat, and then it doesn't!

So, if my experience says anything, the high gliadin IgG can definitely indicate some sort of issue with gluten. The only problem is, I don't know if it's a sensitivity, an intolerance, or full-blown celiac, since I didn't have a biopsy. I'm considering returning to the doctor and telling them about my positive dietary response and getting the biopsy done now, but after 6 weeks gluten-free, there's a good chance it would be negative anyway. Part of me doesn't care, though, since the result is the same -- I clearly can't eat gluten. I think listening to my body is enough for me.

So, you could see how you respond, but keep in mind that it will mess up your biopsy results if you end up going that route. And if you feel really good (like I do), you won't want to go back on gluten for the biopsy!

Sorry if this was confusing. I wanted to share my similar experience, even though I don't have clear "advice." Good luck and I hope you feel better soon!

[key]

My IGg was very high and EMA or something that is most specific for celiac damage was almost positive. THey called it borderline. I had already been gluten-free for six weeks when I had the blood work done and felt much better, so I just decided to stay gluten-free. I would have the biopsy done though if I were you before starting the diet. It can be hard to stay on it. FOr me when I start really feeling better after two months or so I will not be as careful, make myself sick and then say "I will never do it again!" It can be hard not to have a doctor diagnose you, but I have learned and I am way more careful as time goes on.

GOodluck,

Monica

[Guest nini]

my thought would be that you do have an elevated antibody test... which at the very least indicates a gluten sensitivity. I like your Dr. (I'm one of those that does NOT believe in the biopsy as a useful or valid diagnostic tool) I think the blood tests can screen for it, but your best answer is going to be how your body responds to the diet. You will need to be 100% gluten free, including all medications, vitamins, toothpastes, mouthwash, shampoos, lotions, styling products, make up, Watch out for cross contamination in shared kitchens, you will want a new toaster that you ONLY do gluten-free toast or bagels in, I reccommend a toaster oven, easier to keep clean. Anyway... If you are going to do the diet, do it 100% and stick with it. If you are anything like me you will notice a gradual improvement in symptoms and then eventually you will realize you are a lot healthier than you've been in a long time. Give it time though. Don't expect massive improvements in 3-6 months. Average is 2 years.

Good luck and ask any questions that come up.

feel free to e-mail me at nisla@comcast.net if you would like my newbiesurvivalkit zip file... it's a huge file, but I zipped it, depending if you are on dial up or cable modem it can be a really long download or a short one...

[wolfie]

My IgG was the only positive blood test I had too (my dr only ran IgA, IgG and tTg). I went gluten free 4.5 weeks ago and had a very positive dietary response. I didn't see the GI until after I was gluten free (and starting to feel a lot better) and chose not to do the biopsy b/c I didn't want to have to go back to eating gluten and didn't want the fact that I had already been gluten free to skew the results. I can't believe the difference now though...amazing. I do have some not so good days, but none are as bad as I felt everyday before going gluten free. That is enough for me.

Good luck! This board is a wonderful resource where I have learned lots of great stuff!

Kim

[floridanative]

Only my tTg was high and it was first a 10 and then a 7 which is actually very low. My report said 5-9 is weak positive and 10> was positive. Two of three docs said I didn't have Celiac or problems with gluten. Biopsy showed signigicant villi damage blah, blah. I finally found out the the tTg is many times the first test to show a problem and it's 98% specific to Celiac Disease. Two of my doctors apparently didn't know this.

I didn't know how bad I felt until I went of gluten. I have a flat stomach for this first time in 10 years. I feel better than ever and I really didn't feel that bad before (or so I thought). I know I'm lucky to get dx in less than two years and really for a year I didn't question my out of the blue anemia so I was really only looking for answers for six months. After finding out how most people were sick for years....well I'm embarrassed this is happening in America and that is why I will not rest until every person in this country knows the words Celiac and gluten. It is just not acceptable that I can go online and read for two hours about Celiac disease and then go to 90% of the doctors in this country and know more than they do about it.

[tiredofdoctors]

I don't have celiac, but have gluten ataxia. My anti-gliadin IGg was the only postitive bloodtest, and my biopsy was negative. I don't have stomach, "gut" difficulties, but brain and eye stuff. At any rate, being put on Nexium -- I read in two different places that Nexium contains gluten -- better call the pharmaceutical company to verify. If you're going to be gluten-free, you have to watch your meds, too, unfortunately. I've had 3 that have contained gluten. Good luck, and I'll keep you in my prayers, Lynne