Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Need Help!
0

10 posts in this topic

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!

0

Share this post


Link to post
Share on other sites


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! :-)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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! :blink:

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!!!!! :huh:

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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! ;-)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      102,702
    • Total Posts
      914,492
  • Topics

  • Posts

    • Glucose Tablets
      According to RelioOn, they do offer Gluten free glucose tablets website info   Lar
    • Do this, scientists! (experiment to confirm/deny the existence of "leaky gut")
      Good idea! Add also the lactulose - mannitol test, to confirm they are/are not experiencing leakyness in the gut, then correlate the results with the symptoms (obviously digestive symptoms would have to be excluded, because diarrhea and bloating will probably be present anyway, due to having damaged intestines). You see, ironically it would be "gluten-free challenge", because possibly systemic symptoms ("leaky gut syndrome")  and GI symptoms start after going IV fluids -> gluten-free (instead of "gluten challenge", which would be gluten-free -> gluten).
             
    • "Pre-Celiac" & scared
      PPIs should not affect your digestion of gluten one way or another. Many folks with celiac disease may have villous damage without obvious symptoms. Others eventually get symptoms after the disease is "activated," but exactly how or why this happens is not yet clearly understood. Biopsies are generally done after someone has symptoms, and likely already has villous damage, so I would imagine your doctor must be necessarily a bit vague about whether you might have "inactive" or "active" celiac disease. The gold standard is to get a biopsy while still eating gluten, and then another after being on a gluten-free diet for some time, to assess whether you heal without gluten in your system. Positive genes and blood work, AND villous atrophy would seem like fairly strong evidence, but that's up to your doctor to determine. If you feel comfortable sharing your test results on the forum, some folks here can give you their two cents. But listen to your doctor! Glutenease might help your digestion, but if you have an autoimmune reaction to gluten, it won't prevent the possible damage that comes with gluten mistakes. Research on l-glutamine is somewhat supportive for healing, but it's not a panacea.  You will read about various levels of sensitivity and prudence here and elsewhere. Eventually you'll come up with a plan that you consider is "safe," but hopefully will still let you get out in the world. Read up on gluten-free groceries and how to deal with restaurants safely, and you ought to be able to find a happy "middle-path" between prudence and paranoia. I'm one of the fairly sensitive/paranoid types at this point in my life. I personally don't worry too much about possibly breathing in gluten, but on the other hand I wouldn't eat anything that's been out where flour is in the air. Nor would I use a shared toaster or fryer. Again, it's important that you form a lifestyle approach that is informed about the risks but still a good life! Most importantly, work with your medical team to determine if you in fact have celiac disease.
    • Second Panel has come back...advice?
      We are utilizing the "our kitchen is completely gluten free" and DEFINITELY checking every label every time methods. SO glad to hear my DGP should drop!!!! 
    • Celiac in 10 month old?
      Without reference ranges for the IgA there's no telling wether the IgA or tTG are anything worth while.  I think your best bet is to wait on a call from them for interpretation. I know that's hard but really, they are the ones with all the necessary information.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      59,739
    • Most Online
      1,763

    Newest Member
    larnotlars
    Joined