Need Help!

[debberdee]

O.K. Here it goes. I thought I was diagnosed with celiac disease in Feb. I have been gluten free since then. I had blood tests done. My results were....IgA 14, IgG 41 and IgA 2. I am 45 and have had fibromyalgia for years, osteo-arthritis most of my life, so many gastro-intestinal problems that I won't list them, Started having what the doctors thought were MS symptoms abot 18 months ago! and the list goes on and on! I have also had allergy testing....allergies include.....eggs, yeast, dairy, malt and wheat. I feel great on the gluten-free diet. I have had all five of my children and husband tested, mom still waiting for results 3 of my 5 children have #'s larger than mine on the tests but my 22 year old says we don't have celiac disease. She has been to 2 different doctors and they have said her #'s mean nothing! She is making me crazy! Won't let up on how wrong I am and how right she is! Anyway, I feel better physically than I have felt in my whole life. I just need some input!

[tarnalberry]

What your mom thinks doesn't matter, period. You know what you need to do for your own health; you live in your own body. Keep doing what you need to do to feel healthy! :-)

[debberdee]

I am new to this posting stuff! Maybe I am doing it all wrong. I thought I posted a reply but lost it! Anyway, I think I confused the situation. It is my daughter who is armed with ALL the knowledge(!) She thinks my doctor is wrong. 3 of my five children have #'s on their blood tests higher than mine. My husbands #'s also came back showing similar results. It is my mom who is still waiting dor her eesults to her blood tests. I continue to get phone calls from daughter questioning everything I do concerning what I thought was my celiac disease diagnosis.

[KaitiUSA]

So your blood test came up high and your daughter says you don't have it? I'm sorry but she sounds wrong...you have alot of things connected with celiac..osteo-arthritis, fibromyalgia, and gastrointestinal symptoms and then a high blood test...numbers do mean something...when they are elevated you have celiac...doesn't matter if they are alot over or a little over. Maybe she is in denial.

If you feel better go with that and don't let anyone tell you otherwise. Only you know how your body reacts to foods so stick with it.

[debberdee]

Thanks, Katie!

Yes, that's what my daughter thinks. Her blood tests show elevated levels as well but her GP and a specialist have told her the #'s mean nothing! It's just that I have 3 other children with elevated #'s and am trying to help them, as well. Two of those children are still teens and living at home. I know from all the postings that I have read that I am not alone when it comes to people not understanding celiac disease, but................right now I am in the HOT SEAT and it is very uncomfortable!

[KaitiUSA]

Her blood tests came back high and her doctor said it was nothing????? GET HER A NEW DOC...alot of doctors don't know what they should about celiac and he seems to be one of them

[tarnalberry]

Sorry for the typo, but the advice still holds. It doesn't matter what your daughter thinks on the issue. In fact, it needn't even be a topic up for discussion. I know you want to help her with your numbers, and the most you can do is give her accurate information and accurate resources. Beyond that... you can lead the horse... you can't make it drink.

[debberdee]

Thanks for your replies. I am a mom and probably need to be in re-hab for being a "chronic fixer"! I know I can't change how my daughter feels> She just gets under my skin and is able to push my buttons and then I get confused and don't know quite how to respond to her comments. Don't get me wrong, she's a wonderful daughter! I am so proud of her. She is a very gifted and intelligent individual! I am just wondering if anyone knows exactly what the #'s mean. I keep reading everything I can find about celiac disease and it seems that there is mixed answers everywhere. Does this just go along with the disease? Oh, Yeah, Sorry I mis-spelled your name Kaiti! Again, thanks for trying to help a confused ol' lady!!!!!

[KaitiUSA]

There are always questions along with celiac. I do believe that there are some blood tests that test specifically for celiac and have a there is very rarely a false positive. The gene tests are good to have done for celiac too. Biopsies can be good but if you don't have damage yet that can come back negative so again that can leave another confusing answer.

I think maybe your daughter doesn't want to think her or you guys could have celiac or maybe she just believes the unhelpful doctor . Would she listen to a doctor who knows alot about celiac or not?

My family(extended) is great, but they are stubborn when it comes to being tested and so forth so I can understand what you are going through.

Maybe you should have her come to this board....I know people on here know more then alot of these doctors

[tarnalberry]

A lot of family members of people on the board seem to have a blind spot when it comes to being willing to believe they may be gluten intolerant, so you're not alone. It still sucks, I'm sure. :-( If she has that much faith in the medical community, I agree with Katie's suggestion of seeing if you can find a doctor who's well versed in celiac disease for her to talk to.

Good luck toughening those buttons! ;-)