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
      104,673
    • Total Posts
      921,692
  • Topics

  • Posts

    • Thank you everyone! Good to know I am not alone with this. I am asking for a referral to a new cardio. Hopefully it will all go away the longer I am gluten-free. It started up in February/March after a gluten challenge and mostly vanished until July when I had a lot of shortness of breath. It absolutely was CRAZY just a few days after the glutening. I was gasping for breath and the beats were all over the place just walking through a parking garage and I was only mildy anemic at the time.   But it seems to "quiver" and do funny things for a bit still. I sort of theorized maybe it was inflammation in the heart because after this last glutening, my head felt like it was in a vice and my eyes would sting or get stabbing pain hurt (that is finally going away thankfully...knock on wood).  The head/eye pressure I learned also happens to my sibling who has celiac and his naturopath told him that sometimes the brain gets inflamed. Hopefully I can meet the new cardio soon and feel confident that he is taking me seriously. It is sort of difficult to feel confident in the opinion of a doctor that your ticker is ok when they are not really listening and end up making you cry. LOL. A friend of mine in the mental health field recently listened to my story of doc after doc and test after test and said that it was akin to the folk story of blind men describing an elephant. A group of blind men all feel one part of an elephant (tusk, tail, ear, tail) and then compare notes only to find they all disagree.  In some  versions they argue intensely. In other versions they have to collaborate and listen to each other in order to "describe" an elephant.    
    • Good afternoon! I am new to this board and fairly new to researching Celiac Disease, although I had a general idea what it was. My health has become a huge mystery to me, and it's one that I am desperate to solve. The biggest issue right now is horrible, life affecting fatigue. I have been dealing with it for several years now- as many as 5 to 6. It has gotten progressively worse, and nothing at all helps. Sleep apnea has been ruled out. Intestinal issues are something I have dealt with for almost two decades. I'm 45, but I've already had two colonoscopies as well as two endoscopies. My first endoscopy was as a child for persistent, severe stomach pain. My last colonoscopy and endoscopy was two years ago. The only thing that has come from those is an Irritable Bowel type condition and GERD, which is pretty bad. My bowel movements have always been crazy. They can be very normal and healthy to completely crazy. I've had periods of persistent diarrhea to occasional constipation, which is a fairly new thing within the last year. Last week, I went from having diarrhea that morning to hard, round balls of stool by that evening. My most common stools here lately, though, are not quite diarrhea, but more fluffy, large piles. Gas is an ongoing, daily issue for me. I have copious amounts of gas every day no matter what I eat or drink. Most of the gas in non-odorous but it can be very loud. I am currently on a total of 60 mg of Ritalin per day just to function. I often add energy pills, purchased from places such as GNC, because the Ritalin isn't working. Yesterday, I took both doses of Ritalin and two energy pills, and I passed out on the couch after work. I work from 7:30am to 3:30pm, and my work day is nothing too crazy. I try to keep very consistent sleep hours and could easily sleep to 1:00pm or longer if I don't have to get up for something. I sometimes have short periods of energy in the mornings, but that is usually over by noon. The quality of my life is greatly affected. I don't want to go anywhere or do anything because I am way too tired. I'm trying to keep up with my exercising, but that is also a struggle.  I have a history of clinical depression for practically all my adulthood, but it has been very well managed for the last four years. The fatigue is currently causing a great deal of depression, but it is very different from the clinical depression that I use to deal with. When I don't feel sleepy and tired, I don't feel depressed. When the fatigue sets in, I feel very irritable and sad. I realize that the stimulants can cause irritability, but I don't feel irritable or sad when I'm not feeling fatigued.  I've only recently began to explore that the fatigue and the intestinal issues could be related. I have always accepted that I have a sensitive, cooky digestive track. The increasing, unrelenting fatigue is what has lead me to exploring the possibility that everything could be related. I did have blood work last November. My doctor did not test for anything Celiac Disease specific, but she did do a Vitamin D, ferritin level and overall metabolic panel. All of that is normal. My thyroid level is also normal, and I do take thyroid hormone because I had half of my thyroid removed 11 years ago due to what turned out to be a benign thyroid tumor.  I just saw my doctor two weeks ago, and she increased the dosage of my Ritalin. That has not helped at all. She has never mentioned Celiac Disease to me before. I made an appointment for this Friday afternoon to talk about it, but I keep wondering if I'm even heading in a direction that makes sense. I decided to post here for some guidance. I'm sorry this has been so long. I'm not really into cutting something totally out of my diet just to see what happens. I also feel like that if I have something that is poisoning my system, I need a real clinical diagnosis of that. I feel like maybe I'm grasping at straws now and imagining a correlation that isn't there. I am not looking for a quick fix, but right now I have no idea what needs to be fixed. I am open to any information and/or suggestions. Thanks so much!   Jennifer
    • I too have heart palps, flutters, skips whatever you want to call them. Ecg shows nothing. I was told by my doctor it is due to my low iron which is due to celiac. They pretty much went away after being gluten-free. But occasionally do come back. I've actually been having them for the past 3 days. But I was glutened with really severe reaction about a week ago so not sure if its due to that. Or if iron is low right now. I am on supplements but it still goes up and down. I hear you about doctors. It seems if you don't do research yourself or ask questions they don't say or do or test for anything. 
    • For a number of years pre diagnosis I had irregular heartbeats - anything from a fluttering type thing to seemingly skipping one or more beats to rapid beats to something like a short drum riff. I had multiple ECG's which didn't find anything odd. It never did it when I was at the doctors or getting the ECG's. Sometimes it seemed to pound very hard & rapid, at these times I discovered if I just laid down flat on my back, it would restore normal rhythm almost instantly. These things happened at random whether I was at rest, sitting, standing, running or working hard. It was always short lived -- lasting only 1 to several seconds, perhaps the longest was close to a minute. I too have little faith in docs as I've had my share of being blown off, to misdiagnoses. The whole heart thing quit after I had been gluten-free for a while but if I get glutened, it returns.
    • My daughter had the HPV Vaccine last year. It was administered in three doses in April 2015, May 2015, and August 2015. Immediately after the third dose, she started having weird symptoms such has headaches, irritability, and a general feeling of being unwell (which she never had before). About three months later she started having gastro symptoms, most notably constant nausea. For several months we tried to figure out what was wrong and none of the doctors knew. After seeing many doctors and having a battery of tests, she was finally diagnosed with Celiac in August 2016. Her intestinal damage was a 3b Marsh score. No one else in our immediate or extended family has Celiac (myself and my other daughter were tested and are negative). No one else has symptoms or any indication that they could have Celiac. I feel like my daughter could have gone her whole life without being triggered and I'm feeling very guilty for making her get this controversial vaccine. I have done a lot of research and there seems to be conflicting studies regarding vaccines and autoimmune diseases. Some say there is no link, while others say there is a possible link, but it cannot be proven at this time. No one seems to know for sure what triggers Celiac...could it be vaccines? I'm wondering if anyone else feels that their Celiac Disease was triggered by a vaccine?  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,670
    • Most Online
      3,093

    Newest Member
    jelefr
    Joined