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...
How likely is it that someone would have a false negative? Is it especially common if someone has a negative IgA result that they would have a positive IgG?
Feel my frustration in wishing I had gotten the IgG panel - UGH!
I've seen different stats than SMRI. False positives occur very infrequently at a low rate like 1-2% - they almost never happen. On the other hand, false negatives can happen a fair bit. The tTG IgA has a sensitivity of only 75-95%, so that means that on it's best day it misses 1 in 20 celiacs, and on it's worst day it can miss 1 in 4 celiacs. While false negatives happen in a minority of cases, they are not rare. I would guess most people joined this site because they had conflicting test results (one test or other ends up negative).
I tend to look at page 12 of the World Gastroenterology Report on Celiac Disease Practices, page 12: http://www.worldgast..._long_FINAL.pdfIt lists each test and how sensitive it is as well as how specific to celiac disease it is.
And don't kick yourself for not knowing the tests, most of us didn't - I know that I did not. I had the exact same tests run as you but they came up positive. I then had my kids tested because 2 of 3 had some symptoms and they were all negative. Lo and behold, when I put them on a gluten-free diet their symptoms cleared up... What a coincidence, eh? LOL I assume they have celiac disease, with a mom who has it, but at this point, we can't know because the doctors here wouldn't give them any other test but the tTG IgA, and the EMA IgA if the first was positive (which it wasn't).
You're educating yourself now, and that is the important thing. Best wishes.
Is it possible to bring in a bowl yourself (f they have nothing for you) and just transfer the sample to the cup? I would think they should have bowl there. I remember when I had a 24 hour urine collection test and they gave me a bowl that fit over the toilet but under the seat, so I could go normally and still collect everything. They should have something, or maybe a medical supply store would have something you could take there?
Thanks for those links - bookmarked! Came across a few similar ones last night when Googling thyroid/IGF-1 links. Thanks also for the thyroid testing advice. I know this can be a complicated area in terms of testing and diagnosis, so it's good to have some thoughts on where to begin.
I got a letter from the hospital today saying that my IGF-1 levels were "mildly" elevated in the previous blood tests and that the endo has decided to arrange an MRI regardless of the results of the glucose tolerance test, so I guess they're taking no chances, which is reassuring. Re: other pituitary hormones, well, yes and no. The set of blood tests ordered by my GP's surgery in the spring (I'd gone in complaining of worsened hirsutism and growing dependence on those facial oil-absorbing wipes marketed at teenagers) showed high prolactin, though not elevated to the extent that would point straight to a prolactinoma. The prolactin result was the reason for the referral to endocrinology. The hospital ran a new set of blood tests, and by that time my prolactin had gone back down to normal, but was near the high end of the normal range. FSH and LH were normal. Everything else they tested for was also normal (e.g. estrogen, testosterone, etc) apart from mildly high DHEAS.
I'm glad nothing is too high for you, but that almost works against you because nothing is as clear cut.
I hope that MRI goes well and there is no sign of a pituitary adenoma. Let me know how the OGTT GH suppression test and the MRI goes. I hope they clear you of any problems and your abnormal labs were just an unexplained blip like mine.
The first few weeks after the diagnosis are the hardest. You need to change your way of eating, we don't feel better yet (recovery can take weeks to months to years), and about a third experience withdrawal so they actually feel worse for a couple of weeks before they get better. You may need to give 100%gluten-free some more time before you see results.
That being said, once gluten is out of the picture, some celiacs find that other sensitivities become much more pronounced - its like your body relaxed a bit and now it can complain about the other foods it doesn't like. Common sensitivities include milk (50% of celiacs are lactose intolerant when diagnosed although some regain the ability to tolerate milk once they've healed), corn, soy, and eggs; also some react to peanuts, nightshades, and sugar and sweeteners throw others off. You may need to cut out other foods. It may be temporary (for 6 months to a couple of years) but it could be permanent. Keeping a food and symptoms journal could help you see the trends.
Give it time. Remember that going gluten-free is not a quick fix. Some symptoms may improve right away but some symptoms (like arthritis, anxiety, nerve problems, cognitive issues) can take many months or a few years to improve. Hang in there.
I was asymptomatic prior to Dx, so my will power does fail me from time to time. Last week I was at a football game and incredibly hungry. Of course stadium food is the worst so I caved and at a piece of pizza. Then, this past weekend I ate one of my mom's homemade flour tortillas (they are the #1 thing I miss the most).
Both times I did wind up having some stomach cramping. I consider myself incredibly fortunate because that's ALL I had. Of course, now, my willpower is in check for the upcoming holiday challenge!
I have a lot of trouble because I don't really have any symptoms like other people.. I don't have to spend all night in the bathroom or anything. I've been having a bad day today and went to Trader Joe's and saw all their yummy things.. I got my son and husband some bagels that look delicious, and I got some goat cheese with cranberries and crackers for them. I broke down and had about 4 crackers. I'm noticing a little bit of mild nausea, but I'm not sure if that's in my head and I'm just freaking myself out. My test was just one point above normal on the AGA IGA a couple of years ago, and I've had doctors tell me different things, so I think I need to go get retested and maybe an endoscopy, because I've had two doctors tell me that if I don't have massive amounts of diarrhea, not to bother being gluten free. Which means, I need to start eating gluten every day and then go get another test or two..
It's also tough because my husband just thinks I'm crazy and that I don't need to worry. I was telling him about cross contamination and he thought that was the dumbest thing he's ever heard. He thinks it's just OCD and a fad diet. Makes it tough to stick with it.
My immediate symptoms are not severe and consequently I was not diagnosed until I was almost 40, after I developed arthritis, thinning hair, bad skin, fatigue, hashimoto's and a another autoimmune disease that was life threatening. I used to just get a stomach ache sometimes after a meal, and then it became after most meals, and I did not eat a bunch of gluten - I don't even like bread much. LOL
Try to remember that immediate symptoms do not correspond to the damage you are doing to yourself. If you cheat every month or so, you are really hurting yourself in the long run. Symptoms like anemia, osteoporosis, arthritis and neurological problems will creep up on you until they can't be ignored... and sometimes can't be fixed.
Eating gluten (cheating) every month or two (especially every week) will hurt your health. Eventually you may be like me whose autoantibodies stays elevated over a year after I went gluten-free. That means my gut was still being attacked even though I had been gluten-free for hundreds of days. You don't want to get there.
Stock up on gluten-free treats. Have substitutes for when you will be tempted because you know that you will be. Plan ahead so you don't have any poor me moments and you can. Set the people in your lives straight about this disease and if they don't believe you, then don't trust them... Or add minute amounts of (cc) tobasco sauce to all of their foods and drinks and see how they like it when THEIR food is contaminated... If you feel vindictive, melt small amounts of laxative into all their foods and see how they do. LOL JK
And if you have kids, cheating sets a really bad example... actually it does for all family and friends. Why would they take the diet seriously when you don't? By cheating you are undermining yourself.... Its all bad, darn it.