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627145 tn?1230305626

I think

I think one of the most annoying things about celiac disease is the family's reaction to it.  I'm sure I'm not the only person whose family tries to make you feel guilty about daring to think you can't eat regular food.  It's like people think it makes them look smart to be cynical about anything.  Right - like I'd make this up.  

I suppose it makes them mad that this disease is in the family if one of us has it.  They have kids, and I'm sure they don't want to believe they are neglecting their kids if they don't get them tested for it and/or stop feeding their kids gluten-containing products.  

We're just going to dinner together tonight, and I made the mistake of assuring her I'd checked to make sure the restaurant had a gluten-free menu, and it did.  She gave me that long, judgemental pause that she and my mom employ, and then that flat tone of voice she uses to let you know she thinks you're an idiot, and then said she thought I hadn't had any positive tests yet.  I calmly explained that I had tried to eat gluten so I could be tested, but I became too sick, and had to get off it again.  But I saw my doctor, who told me he didn't think much of the tests anyway, and the most important thing was to not eat gluten.  Plus I showed him lumps on the fronts of my shins, which he said was erythema nodosum, which he said was an autoimmune problem from my gluten problem, and that the lumps would go away when I stayed off gluten long enough.

But this isn't enough for her.  I'm sure the whole evening's conversation will be trying to convince me I don't have this.  My other sister, who won't be there, says I should just excuse myself if they get like that.

One problem is that when you are sick long-term, people think you can be bullied without repercussions because you just don't have the energy to stand up for yourself.  When you get healthy and a new personality comes out, they aren't always comfortable with it.  The mean sister has accused me of being bipolar because I've changed. They don't think I can succeed with college classes or anything.  They don't approve that I am getting a divorce, but I need to for me.  

And they wonder why I don't often call them or spend time with them.  Duh!  If they cared about me, they'd be happy that I finally don't wish it was all over with.  
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259041 tn?1206482847
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.
Helpful - 0
627145 tn?1230305626
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.
Helpful - 0
259041 tn?1206482847
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
Helpful - 0
627145 tn?1230305626
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.
Helpful - 0
259041 tn?1206482847
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.
Helpful - 0
259041 tn?1206482847
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.
Helpful - 0

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