Like Cyclinglady said, make sure she keeps eating gluten until all celiac disease testing is done. Those celiacs who are gluten-free will eventually produce false negative test results.
Ask for as many tests as you can get:
ttG IgA and tTG IgG - tissue transglutaminase is the most common test
DGP IgA and DGP IgG - deaminated gliadin peptides are newer tests that are often better at detecting celiac disease in young children or in early cases.
EMA IgA endomysial antibodies tend to become positive as the disease progresses
total serum IgA - a control tests to make sure one is not too low in IA to produce accurate celiac disease test results - 5% of celiacs are IgA deficient
AGA IgA and AGA IgG - older less reliable anti-gliadin tests that were replaced by the DGP tests
endoscopic biopsy - 6+ samples taken
If the tests all come back negative, you could always consider going gluten-free to see if she has non-celiac gluten sensitivity (NCGS). Those with NCGS have the same symptoms as those with celiac disease. Give the diet a good 6 months if you can before judging the effectiveness. Don't go gluten-free until testing is done though.
Yes, the genetic tests just tell you if you are in the higher risk group for getting celiac disease, not if you have it. Plus it is possible, although quite unusual and rare, to get celiac disease without the DQ2 or DQ8 genes.
Many, or even most, diseases seem to have symptoms that are on and off again, Gall bladder problems and celiac disease are both that way. It's like our body is trying to make it harder diagnose on purpose. I don't know about very much about gall bladder issues (beyond that celiac disease can cause some of the problems) but I do agree that your symptoms could be celiac disease so you might as well get tested. Keep eating gluten until you are tested and try to get the whole celiac disease panel run:
tTG IgA and tTG IgG
DGP IgA and DGP IgG
total serum IgA (control test)
AGA IgA and AGA IgG (older and less reliable tests)
dh biopsy (beside rash) - some with dermatitis herpetiformis will not test well in the blood tests
If the problem is caused by non-celiac gluten sensitivity (NCGS) these tests will be negative - the only way to diagnose NCGS is by a positive response to the gluten-free diet (over many months).
Good luck. I hope you find answers soon. It's tough not being at your best when you have youngsters relying on you. Hang in there.
I was at someone's house over the holidays and they were telling me how they had had a celiac over for Xmas dinner and he ate the stuffing and turkey because "it looked too good to pass up. Now thanks to him our friends don't take the diet as seriously - I felt the mental eye rolls when I wouldn't eat the rice crackers that were mixed in with the regular crackers.
I know people don't think of it at the time, but cheating really does make the (strict) gluten-free into the joke the media portrays it as.
It's possible that other genes are associated with Celiac I guess, but there has to be some genetic component or it's not Celiac.
There probably are other genetic components that cause celiac disease. We have only known about the DQ2 and DQ8 for a few years now, and doctors agree that approximately 3% of celiacs do not have either of those genes.... It happens. It will be interesting what other links they discover in the next few years.
Welcome to the board, nettinpete. It looks like you belong with us. You have the same positive tests that I had. Hope you are well soon.
It is sometimes hard for people to resume eating gluten for 2-4 weeks for the endoscopic biopsy, or 8-12 weeks for the blood tests, so we often tell people to get the testing done before going gluten-free - it gets trickier when your appointment is almost 2 months away. Have you had any tests done yet? If you can get all the tests run by your GP, it might be a good idea to resume eating gluten and getting the tests done soon and then you will probably only have to resume gluten for 2-4 weeks for the biopsy. I didn't see how long you have been gluten-free, but if it is only a few days you won't need to resume eating gluten for long (most likely) to get accurate tests. If you were gluten-free for a month, I would eat gluten for a good month before testing.... The shorter amount of time you were gluten-free, the shorter the gluten challenge will probably be required.
If you get the GP to do the testing, get as many tests run as possible. These are the tests:
ttG IgA and tTG IgG (most popular tests - get both done and not just the tTG IgA) - tissue transglutaminase
DGP IgA and DGP IgG (newer tests good at detecting earlier celiac disease - get both - it replced the AGA tests) -deaminated gliadin peptides
EMA IgA (detects more advanced damage - similar to the tTG igA) - endomysial antibodies
AGA IgA and AGA IgG _older and less reliable tests largely replace by the DGP tests) - anti-gliadin antibodies
total serum IgA - a control test to ensure you make enough IgA for accurate tests
If you haven't been gluten-free long, consider resuming eating gluten for a time and get the tests done. If you are gluten-free from December to February, you will need a 2 -3 month gluten challenge for accurate tests - why go through that if you don't need to, right?
I met with the GI today and she asked if anyone had talked to me about my lab results and I told her the nurse said they showed positive for celiac. The GI responded with, "they're not positive, just slightly elevated and we need to do an EGD to rule it out".
Sooooo.. if she wants to "rule it out". What else would create these lab results if its not Celiac? Just kind of curious what would come next if my biopsy happens to come back negative.
Nothing. Your results were sky high, you have celiac disease in the family, and you have symptoms - that's celiac disease. You appear to have a doctor who wants to cross all of their t's and dot all of their i's before they'll sign off on a diagnosis.
About 5% of all positive tTG IgA results are caused by diabetes, crohn's, colitis, thyroiditis, chronic liver disease, or a serious infection BUT it would be a weak false positive - not a positive that is at almost 200. That's celiac disease.
I got it!. Sprinkle Mirilax on the cookies and then proclaim...Welcome To My World
LOL! Ooooh! I like you!
Cookies cookies everywhere and nary a crumb to eat. Bring yourself a thermos of Balieys with a bit of flavoured coffee or extra creamy hot chocolate - it might make you feel better, and if you drink enough you won't care anyways.
Ugh. They do sound confused. And a colonoscopy on New Year's Eve? Lucky you. Bleh.
I would pester them if you can (or get new docs). An endoscopy can easily be done at the same time as the colonoscopy. Two birds with one stone, and all that. Put the bee in their bonnet about taking at LEAST 6 biopsy samples while they are in there, some docs will only take 2 or 4 if they've got other areas to check out (colon).
I too would advise continuing with a regular diet if you are able. The biopsy requires a patient to be eating 1-2 slices of bread per day (or equivalent) in the 2-4 weeks prior to the biopsy. If you are sure the biopsy will not be for a month or so, you could probably cut back on the gluten (some biopsy requirements are only 1/2 a slice of bread a day for 4 weeks) and then maybe increase your gluten as the test date approaches.
Your tTG IgA is very high. There can be very little doubt that it is caused by celiac disease. About 5% of positives are false positives but they tend to be weak positives and not many times above the upper normal limit. False positives can be caused by thyroiditis, crohn's, colitis, chronic liver disease, diabetes, or a serious infection... I highly doubt your high result is caused by any of those health issues, and I mentioned all this because with such a high score, some doctors would not require a biopsy. Biopsies are not perfect and can miss up to 20% of all celiacs. Your doctor wants it for a diagnostic confirmation, but please know that even if it is negative, you still have celiac disease (over 95% certainty).
Make sure the doctor takes at least 6 or more biopsy samples during the endoscopy. Our intestines has the surface area of a tennis court so it can be easy to miss patchy damage.
Best wishes, and welcome to the board.
Oh, and you should get your children tested. Celiac has a genetic component. Make sure the doctors run all the tets as kids tend to get false negatives. Do the tTG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA, total serum IgA control test, and maybe the AGA IgA and AGA IgG if the DGP tests are unavailable.
I'm sorry you weren't well. I've never heard of L-glutamine causing a problem in people. Are you sure it was the cause and not something else, or even the usual ups and downs that happen in the first half year or so of recovery.
Perhaps try it again in a couple of weeks and see how it goes...