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

My Mom
0

7 posts in this topic

My mom has been suffering from all kinds of problems for years. She has been diagnosed with Fibromyalgia and Bipolar disorder, Afterwards I was diagnosed with Celiac and so she got herself tested for it as well. Well, the blood test came back negative but I still feel very strongly that she has it as it would explain not only the problems she has been diagnosed for but also the undiagnosed. Is it possible that it was a false negative? My uncle after hearing that I had gone gluten free also went gluten free (without seeing a doctor) and has claimed it has made him feel much better. It all just seems too convenient, anyone have thoughts on this?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Nick, does your mom live in the same town as you & did she see the same doc for the blood tests? Often the full celiac panel is not ordered. There should be 6. She could have had a false negative or a full panel may not have been ordered. Can you get a copy of the test results along with ref. ranges & post them here?

Even if your mom saw the same doc as you -- did you get a full panel or did you just get lucky & get a positive from less than the full panel? Catch what I'm saying?

Well, as to convenient ---- one in 133 people has celiac disease. And look at my sig. line --- how about 2 of us in the same house not only with celiac but presenting with dh (dermatitis herpetiformis - the celiac rash)?

And welcome to the board Nick!

0

Share this post


Link to post
Share on other sites

Nick, does your mom live in the same town as you & did she see the same doc for the blood tests? Often the full celiac panel is not ordered. There should be 6. She could have had a false negative or a full panel may not have been ordered. Can you get a copy of the test results along with ref. ranges & post them here?

Even if your mom saw the same doc as you -- did you get a full panel or did you just get lucky & get a positive from less than the full panel? Catch what I'm saying?

Well, as to convenient ---- one in 133 people has celiac disease. And look at my sig. line --- how about 2 of us in the same house not only with celiac but presenting with dh (dermatitis herpetiformis - the celiac rash)?

And welcome to the board Nick!

Wow thanks, She did not see the same doctor, and I am not sure if the full panel was ordered for her or myself. Regarding her test results, I will ask her if she still has them. She was tested a few years back, but perhaps she can get a copy from her doctor. When she was tested negative, my knowledge of the disease and its symptoms was much less than it is now so I dismissed my suspicions at the time. Thank you for your response!

0

Share this post


Link to post
Share on other sites

Wow thanks, She did not see the same doctor, and I am not sure if the full panel was ordered for her or myself. Regarding her test results, I will ask her if she still has them. She was tested a few years back, but perhaps she can get a copy from her doctor. When she was tested negative, my knowledge of the disease and its symptoms was much less than it is now so I dismissed my suspicions at the time. Thank you for your response!

Ohhhhh, so she wasn't tested AFTER you? She was tested a few years ago? She needs to be retested & with today's tests. Okay, here is the full panel TODAY:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The DGP test was added recently to the full panel.

So she needs to make SURE the doc runs ALL those tests on her.

AND she needs to inform her doc that HER SON recently tested positive & was diagnosed celiac. That should make a big diff. to her doc & should make him not argue with her about re-testing her.

0

Share this post


Link to post
Share on other sites

Ohhhhh, so she wasn't tested AFTER you? She was tested a few years ago? She needs to be retested & with today's tests. Okay, here is the full panel TODAY:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The DGP test was added recently to the full panel.

So she needs to make SURE the doc runs ALL those tests on her.

AND she needs to inform her doc that HER SON recently tested positive & was diagnosed celiac. That should make a big diff. to her doc & should make him not argue with her about re-testing her.

I'm sorry I must have caused a miscommunication, she was tested after me. I tested positive around eight years ago. She tested negative around five years ago.

0

Share this post


Link to post
Share on other sites




Ah, I see. So we're back to where we were before. If it was 5 yrs. ago though then she certainly didn't get the Deamidated Gliadin Peptide (DGP) IgA and IgG test b/c that has recently been added to the full panel. And if I were taking bets, I'd bet she didn't get the full panel even w/o the new DGP.

Even if she doesn't still have a copy of the tests she should be able to get another copy from her doc. Tell her she needs to make sure that it has the ref, ranges on it also. Then post it here. We have members who are very good at interpreting those test results.

0

Share this post


Link to post
Share on other sites

She may have been negative 5 years ago and could end up with a positive test now. And even if she doesn't test positive gluten still could be a problem. My youngest son tested negative after I was diagnosed. Two years later he had positive blood work.

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
      104,357
    • Total Posts
      920,529
  • Topics

  • Posts

    • The doctors just made me feel like I was crazy because they did not have a clue of what was wrong with me. I did a stool test (positive) and I did a genes test (positive for two gluten sensitive genes, one in each chromosome).  Blood test are not so foolproof, if you read the comments/experiences in such topic you will see the problems. Biopsy can give a false negative if taken from an undamaged area. If you have medical problems that go away once on a gluten free diet then gluten is the problem. The medical establishment profit from managing your medical problems and big pharma makes money by pushing pills so we need to be careful because they won't benefit if a gluten-free diet solve your problems. Since I started a Gluten free diet I have been free of the following: (all related to Celiac)  Irregularity, Intestinal noise, Irregular stool, Tooth enamel defects, Rash in upper arms, Abdominal swelling, depression, fatigue, irritability, lactose intolerance, 
      loss of memory, dandruff, uncontrollable bladder, suicidal thoughts, unable to sleep, Canker sores/ Mouth ulcers, high blood pressure, and probably others that I did not realize. I was at the end of my rope, thanks to Google and the people that are able to talk about this I was able to get my life back. I am passionate about this because I know how bad its can get. 
    • Well, I have never cruised on Carnival, but I am sure they can accommodate you.  I assume that you have already alerted them that you require gluten free meals.  If not, please contact Carnival immediately. Here are my own tips.  Some folks eat off the buffet line, but not me or hubby except for coffee/drinks and baked potatoes (jacketed) and fruit that we wash in the restroom (people touch everything!)  Okay, I am OCD, but my last glutening which occurred the previous summer made me sick for three months (GI tested my antibodies to prove it).   When we board, I go to the buffet restaurant ASAP and ask to speak to the Head Waiter (they are usually there greeting customers and often trying to up sell to specialty restaurants.   Let them know you have celiac disease and must be gluten free.  They may try to tell you that each dish is clearly marked gluten free, but really?  Who's to say that some other passenger is not going to switch spoons (or I have seen passengers wandering around with serving spoons...I kid you not!  The staff usually will  go downstairs and fetch a gluten free meal for me from the main dining room's kitchen as there is usually a dedicated area for allergies.  We have to wait up to 20 minutes or so but it is worth it.  Starving?  Get a baked potato wrapped in foil until your gluten-free meal arrives.  Now, do not do this every single time.  Those folks have to go down several levels to fetch food and you don't want to be a pain.  But if the main dining area is closed, they need to make an effort to keep you safe.  On our last cruise, we were advised not to eat anywhere but the main dining room and that included room service (they are not trained to handled allergies).  My headwaiters have sent goodies (prepackaged gluten free rolls and cookies for us to keep in our room.  We can always grab whole fruit (I wash it first) to snack on.  I bring gluten-free non-perishable items with me to eat while at port in case we can't find anything (which can be often).  Again, when we get back to our ship, we contact our headwaiter and he/she can prepare some snacks until we have dinner.   Be grateful and not picky.   We eat all meals in the dining room (or at least as much as possible).  Our headwaiter had a few other celiacs on our cruise this summer, so they prepared some gluten-free waffles, etc. for our breakfast!  What a treat!  At breakfast, we'd have different waiters, so our headwaiter would always instruct our waiters each and every time!  They even let me tour the kitchen and showed me the allergy section.   The only time I did not feel safe was at the buffet.  We once ordered gluten-free pizza and I realized (I watched) that that restaurant didn't really have the gluten-free thing down), do I called him on it.  Got the manager etc.  So, be careful.  Other cruises made us frozen Udi"s which was just fine with us.  They covered it up in foil so that we would not get any cross contamination from their pizza oven. So, have fun!   Tipping?  We prepaid our gratuities, but we gave our headwaiter an extra $200.00 for his time.  For us, it was well worth the service and safety of our food.  It does not hurt to slip some of the tip ahead of time (like after your first meal!)  
    • <strong>Celiac Disease & Gluten-free Diet Information at Celiac.com. Gluten Free Diabetes ::The 3 Step Trick that Reverses Diabetes Permanently in ... View the full article
    • I had a biopsy done (2 samples, 1 on a lesion and 1 next to lesions), and also more bloodwork done. All came back negative. However, I only had been eating gluten for 2 weeks prior, and it took a week of gluten for lesions to reappear. I also used a topical steroid off and on (1x a week approximately) for a month or so before testing. The dermatologist told me to stay off gluten though, and said she wants to do more allergy testing (her next open testing appt is in 6 months!!). I know I'm not the DR, but I dont think it's allergies...without a doubt, my skin begins clearing about 2 weeks post gluten-free diet...this is without changing anything else in my lifestyle. And when i had to go back on gluten before my biopsy, it took about a week, but did reappear. Now, about 2 weeks post biopsy and gluten-free, it had begun clearing until i worked outside all day in heat, humidity,  sweat etc and it has definitely irritated all the places that were healing (not new breakouts, just aggravating what was going away!). All that being said, i have a friend who is an MD( who's hobby is to attend conferences on skin conditions!), and she has told me that without a doubt, I have celiac/DH.  I think I just feel like I need test results and paperwork to show for it...especially to show family members who are unsupportive (gross understatement!) of the extreme changes I've had to make!
    • Sorry ! I have never cruised before.  Just wanting to follow your topic.  Good luck! Have a great,  safe vacation.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,432
    • Most Online
      1,763

    Newest Member
    rbeckler60
    Joined