It is possible I suppose that if you have been off gluten awhile then your tests could come up negative. It's possible also that your intestines have begun to heal. My daughter's blood tests were possitive but she saw the endo today and she said she had very mild disease. She said the intestines were inflamed but if she didn't know the blood tests results, she wouldn't have said "oh yeah, it's celiac for sure." She said she'll heal fast because of the mildness. My daughter does feel better not eating the gluten either. Before this she was constipated, now she goes everyday. The doc said most she sees present with constipation and mild symptoms,, not the extreme cases we often hear about. She said not everyone is that sick with it. She said my daughter could have gone on like this without the symptoms getting worse and she could have been sub- clinical for a long time. Who knows? She;' just glad she found out, anyway and she has no problem with staying off gluten.
My blood tests were negative. My surgeon says it's the tests that are wrong. I don't want to try upper and lower endoscopy if I can't stay off gluten because of the inflammation involved in the lower tract (while eating gluten) and the risk I could get false negatives for the upper.
Colonoscopy was attempted in 2004, but the endoscopist was unable to go past the sigmoid due to tortuosity of the colon. What a waste of money! I'm not trying again with an inflamed colon that a scope won't go through, that's for sure. CT scan is recommended, but now they say the radiation exposure is much higher than they knew (which is so evil of them not to figure out!). Barium enema sounds too demoralizing, especially when you know the people doing the studies like I do.
So my family can just be annoyed - I'm not eating gluten because it makes me sick.
The dinner I had with my family went better than expected. I got them all laughing and they forgot to be judgemental.
Hi!~ i think if you have eaten gluten in the last 3 months the test should still come out positive and so would the biopsy I would think. Your intestines don't heal that fast, there would still be some damage there to see and biopsy. Macular degeneration isn't auto immune but your Mom with the constipation, SHE might be the one with it. That's basically what my daughter had, no loose bowels, just constipation and a bloated feeling. Also your grandmother (mother's side?) might have have it also. Diabetes is auto immune too if you get it early in life and it's type1
My uncle has macullar degeneration. There is diabetes. My mom has digestive problems, but like me they are mostly constipation. But I think the other side of the family might be the problem. My grandmother was 5'6" in her youth, but osteoporosis shrank her to about 4'11." That could be celiac disease. I'm English/Scottish and German mostly. And I saw a gastroenterologist and would have had upper and lower endoscopy, but I couldn't keep eating gluten. It made me too sick.
p.s. does anyone in your family have an auto immune disorder, it doesn't have to be celiac, like thyroid problems, rheumatoid athritis,lupus,diabetes? They tend to run in families.
Oh you poor thing, I think that's awful! My daughter was diagnosed and i went on the internet and found out all I could about it. I buy her gluten free food and find out what she can eat that doesn't have gluten in it naturally. I totally support her, but....she has a MEDICAL diagnosis. I know my daughter's father in law thought it was all hogwash till he heard the biopsy results, which were inflammation of the intestines consistent with celiac. Even the positive blood tests weren't enough. Her husband was doubtful at first too but now he's on board with it and even eats the gluten free pasta etc..
I think it scares people in the family. I mean tell someone they can NEVER eat regular bread again?? It's like taking away freedom of choice and stuff like that. It's something that 1 in 133 people in this country have and millions are walking around with it and don't even know it cause symptoms can be vague and most go undiagnosed. If there was a pill for it (they are working on a couple) it would be easier for people to, pardon me.....digest. Just keep doing what you're doing. If you get a firm diagnosis maybe someone will believe you. See a gastro doc next regardless of blood tests (some test negative in some of the tests, I know a few) and he will probably want you to do an endoscopy to rule it out or whatever. Your family is just in denial and don't want to have it too, but what can you do, it is hard.