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

What Do You Think?
0

5 posts in this topic

Hello all, I am obviously new here. I decided last night to do some research on this topic and was really surprised. I have not been 'officially' diagnosed, but I guess that is just a formality at this point. I guess a history would be helpful:

After the birth of my 2nd (and last) child almost 4 years ago (at age 31), my body basically fell apart. I suffered with chronic diarrhea and severe headaches for almost a year before going to the GI dr. I was using exederin migraine all that time. I had a colonoscopy, which came back normal. He said it was probably IBS. Ok. Exactly one year later (and with continued symptoms), I had 3 gallbladder attacks and ended up with my gallbladder removed. So of course, the diarrhea worsened. But so had the headaches. We ended up going the headache route and had CT scans, MRI, the works. They did find a meningioma (brain tumor), but it was so small and it such an insignificant location, there's no way that was the problem. I realized on my own the aspirin in the exederin was killing my stomach. Switched to excederin tension (no aspirin). Small improvement there. But after one of my worst flare ups, I lost about 10 lbs (over a couple of months). I can eat anything and never gain a pound. I also can't travel, eat out, leave the house within 2 hours of eating, and never ever know when it will hit. Sometimes immediately, sometimes the next day. Sometimes a food was ok, others it was a disaster. That was the confusing part. I could never find the offending food. In June, my GP did some blood work and decided to run a gluten sensitivity test, almost as an afterthought. When I saw him again a month later, he mentioned that it had showed a "weak positive", but that I could test again and it might be negative. Not really concerned. I basically dismissed it too. Then last night I started researching. I did not know that this disease causes damage to the intestines. I thought if the symptoms were tolerable, no need to go gluten-free. Wow, what an eye-opener this board has been. Every symptom I have is on the list provided on another post. I suspect I also have residual bile salts diarrhea from not having a gallbladder, which is complicating things even more. I never know when, and a simple sip of water can trigger it. I suppose I should be retested. I don't know what he ran to show a positive or negative, but I see that there are 4 different blood tests. Can someone tell me exactly what they are? Whatever I request, he will run it. He is extremely cooperative and does his best to help. I just want to be able to tell him exactly what I want done. Any other thought or suggestions would be wonderful too. Thank you! :(

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi there!

First, I just wanted to say that I'm sorry for all of the suffering you've been through these past 4 years. No one deserves to spend that much time in misery. Based on your symptoms, it would definitely be logical to suspect Celiac disease. I'm not sure if you have read this yet or not, but it is believed that in genetically susceptible individuals, the onset of Celiac disease can be triggered by pregnancy (I'm not sure exactly why...it may be the stresses that pregnancy places on the body, or hormone fluctuations...in any case, pregnancy is recognized as a common time for celiac disease onset). So your story really is consistant with what is referred to as "classic" Celiac disease.

As far as the tests go, I don't have a medical degree or anything, but I did attend a recent consensus conference at the National Institute of Health aimed at developing a uniform public health policy regarding screening, testing, diagosis, and treatment of Celiac disease. One of the topics covered was the various serological tests used for diagonsis. There were actually 5 blood tests that were mentioned, including:

AGA-IgG (antigliadin antibodies, IgG class)

AGA-IgA (antigliadin antibodies, IgA class)

EMA-IgA (endomysium antibody, IgA class)

TTG-IgA (tissue transglutaminase antibody, IgA class)

ARA (antireticulin antibody, IgA class)

The researcher who presented on the blood tests concluded that the two tests of the five mentioned above with the best sensitivity and specificity are the EMA-IgA and TTG-IgA. So if you are going to tell your doctor which test to perform, the current research indicates that you should pick one of these two. Regardless of which you pick, you should also tell him to check your total IgA levels because 1 in 300-400 people are IgA deficient. In IgA deficient individuals, both of these tests can produce a false negative (since they measure levels of Ig-A class antibodies).

If the bloodwork does come back positive, it is necessary for you to have an endoscopy performed by a GI doctor so that biopsies of your small intestine can be taken to check for abnormalities consistant with celiac disease. The description of the procedure frightened me when I read it, but doctors typically give an anesthetic that induces a "twilight sleep," so I didn't experience anything more than a slight sore throat.

Anyway, I'm on my way out so I've got to wrap up this post now, but I hope this information helped. Feel free to e-mail me if you have any more questions. I wish you the best of luck in your search for the source of your symptoms.

~Wish

0

Share this post


Link to post
Share on other sites

Thank you so much! That is the exact info I needed. I've spent a couple of days now researching the gluten-free diet, just to try and prepare myself for the changes I know will be ahead. I personally have no doubt that this is celiac disease. I vaguely remember my exMIL going through the diarrhea and weight loss for a long time and then finding out that it was celiac disease. Her mother also had it. That has been in the back of my head for a while now. I should have been a little more aggresive investigating it, but like I said-I had no idea the devastation caused by the disease. I thought it was only inconvience. Boy, was I wrong. I'll be calling my dr. Monday to set up one of the sets that you listed. And thank you again!

0

Share this post


Link to post
Share on other sites

Hello again! I'm hoping Wish will find this again, or maybe someone who can tell me what this means. I went today with the list provided by Wish to get more blood drawn for additional tests (I had no idea what test he had done). Everything tested well within normal limits except the AGA-IgA, and it was only 23 (20-30 indicates a weak positive). He is going to do more testing, including the ones mentioned by Wish (the 2 that are recommended). So does this mean anything to anyone? Or not until I have more info on the other tests? I won't have those back until Friday at the earliest. Thanks for any help you can give!

0

Share this post


Link to post
Share on other sites

Another test that is needed is Total IgA. Some individuals (as many as 1 in 500) are IgA deficient and do not produce tTG. Apparently is possible to have positive Anti-Gliadin antibodies (IgA) and still be IgA deficient.

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
      104,636
    • Total Posts
      921,534
  • Topics

  • Posts

    • I have 2 insurance policies, one with my husband's company and one through mine. I also stretch out the more major work into the next year, so I can make the most use of my benefits. So, a dental implant for me takes about a year for me to complete.  I have the post put in at the end of one year and the tooth made about 6 months later. Honestly, the insurance company probably hates me because I max out my benefits every year. You do what ya gotta do!  I still have to pay for some of the work out of pocket but about 75% gets covered. If you pay cash for procedures then they usually charge a lower price. Haggle with the dentist over price. They like getting cash.
    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,639
    • Most Online
      3,093

    Newest Member
    NickyW_UK
    Joined