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

New To Forum With Blood Work Questions...
0

5 posts in this topic

I finally found a good doctor after years of dealing with GI issues. I have been told that it's acid reflux, ulcers, and problems with my gall bladder. When I was at the point were I was sleeping 18 hours a day, running for the bathroom after everything that I ate, could not drive myself anywhere due to the joint pain and muscle weakness, and was thinking death would be kinder, I decided enough was enough. I did some research and realized that celiac's could be my problem. I went gluten free, unfortunately before finding this doctor.

I finally saw him a month ago and I spent about 2 hours in his office discussing all of my issues and symptoms. He ordered 29 blood tests and prescribed all sorts of medications. Last week I went in to get the results of the blood tests. Honestly, I'm completely confused. The celiac test did come back negative. We were expecting that because I had gone gluten free for so long. He did refer me to a GI, who I will be seeing soon. Given my symptoms, I did receive a clinical diagnosis of celiac's.

I should mention my bad cholesterol is good, my good cholesterol is bad, and my triglycerides are 405. I am also pre-diabetic with my A1C being 5.7 and my estimated 3 month glucose at 117. I do suffer from migraines and was diagnosed with Raynaud's. I am lactose intolerant, have acid reflux, and have arthritis in my shoulders. I'm going in for an abdominal ultrasound of my gallbladder in two days. I also an an iron deficiency but am not anemic. I also have pretty bad seasonal allergies.

He was suspecting Lupus but after the blood work came back he could not tell me either way. Instead we would just wait and see. I don't understand the results. It came back Pos Abn, 1:40, and speckled. I guess my question is if I should get a second opinion on this or if I should just leave it alone for right now.

Now that I see this all written out like this, it's a lot. I am a 33 year old woman, two weeks away from her birthday, with too many health issues. Any insight would be greatly appreciated.

0

Share this post


Link to post
Share on other sites


Ads by Google:

I finally found a good doctor after years of dealing with GI issues. I have been told that it's acid reflux, ulcers, and problems with my gall bladder. When I was at the point were I was sleeping 18 hours a day, running for the bathroom after everything that I ate, could not drive myself anywhere due to the joint pain and muscle weakness, and was thinking death would be kinder, I decided enough was enough. I did some research and realized that celiac's could be my problem. I went gluten free, unfortunately before finding this doctor.

I finally saw him a month ago and I spent about 2 hours in his office discussing all of my issues and symptoms. He ordered 29 blood tests and prescribed all sorts of medications. Last week I went in to get the results of the blood tests. Honestly, I'm completely confused. The celiac test did come back negative. We were expecting that because I had gone gluten free for so long. He did refer me to a GI, who I will be seeing soon. Given my symptoms, I did receive a clinical diagnosis of celiac's.

I should mention my bad cholesterol is good, my good cholesterol is bad, and my triglycerides are 405. I am also pre-diabetic with my A1C being 5.7 and my estimated 3 month glucose at 117. I do suffer from migraines and was diagnosed with Raynaud's. I am lactose intolerant, have acid reflux, and have arthritis in my shoulders. I'm going in for an abdominal ultrasound of my gallbladder in two days. I also an an iron deficiency but am not anemic. I also have pretty bad seasonal allergies.

He was suspecting Lupus but after the blood work came back he could not tell me either way. Instead we would just wait and see. I don't understand the results. It came back Pos Abn, 1:40, and speckled. I guess my question is if I should get a second opinion on this or if I should just leave it alone for right now.

Now that I see this all written out like this, it's a lot. I am a 33 year old woman, two weeks away from her birthday, with too many health issues. Any insight would be greatly appreciated.

Welcome!

I think you may be another candidate for Celiac Poster Child of the Month! ;)

What are confused about, exactly? You have to be consuming gluten on a daily basis for a blood panel to be accurate. If you went gluten-free, then don't bother with testing, including a biopsy. You will have started to heal and they won't find anything to back up a diagnosis. But then, they have given you a diagnosis based on symptoms and dietary trial results so that is your diagnosis. You have many of the problems associated with

Celiac. Have they improved on the diet?

My blood work mimicked yours, except for the triglycerides. My bad cholesterol was great, my good cholesterol was 20....really low and I was anemic. My testing for lupus was the same as yours, only much higher and speckled. I don't have symptoms of lupus so I don't worry about it and don't follow up on it. I do have other AI diseases that could produce this result so I deal with the ones I do have and don't sweat any more.

Your inflammatory markers are high and it's most likely from gluten. Gluten produces massive inflammation in the body and it will take time to return to normal. Most of what you suffer from should reverse itself, over time, if you stay strictly gluten-free. Be patient and try not to take a lot of meds. Whatever you do, DO NOT

re-introduce gluten for a definitive diagnosis. GI's like to do this but it will only create further damage and inflammation and set you back on recovery. Don't despair...many of us were the living dead at diagnosis and have made good recoveries. You are young and will recover. If you have questions, ask away! :D

0

Share this post


Link to post
Share on other sites

I should mention my bad cholesterol is good, my good cholesterol is bad, and my triglycerides are 405. I am also pre-diabetic with my A1C being 5.7 and my estimated 3 month glucose at 117. I do suffer from migraines and was diagnosed with Raynaud's. I am lactose intolerant, have acid reflux, and have arthritis in my shoulders. I'm going in for an abdominal ultrasound of my gallbladder in two days. I also an an iron deficiency but am not anemic. I also have pretty bad seasonal allergies.

He was suspecting Lupus but after the blood work came back he could not tell me either way. Instead we would just wait and see. I don't understand the results. It came back Pos Abn, 1:40, and speckled. I guess my question is if I should get a second opinion on this or if I should just leave it alone for right now.

The "Pos Abn, 1:40, and speckled" means you have a small amount of an autoimmune antibody called antinuclear antibodies or ANA, and the pattern is speckled. This link lists the staining patterns and diseases. http://www.fpnotebook.com/rheum/lab/anstngptrn.htm It looks to me like speckled isn't terribly specific, and you would need rim or homogenous pattern for lupus? We have people on the board with ANA that didn't mean much because they can show up with other autoimmunity. You have plenty of it with the celiac and Reynaud's. My mom has them and my doctor doesn't know why but she doesn't seem to have Sjogren's or lupus. Also 1:40 isn't much antibody. High amounts would be 1:160 or 1:320. Seems to me like your doctor shouldn't be diagnosing lupus.

How long have you been off gluten? The low iron, gall bladder issues, joint pain, lactose intolerance and reflux are all celiac symptoms and may be a result of simply not being gluten-free long enough or carefully enough to heal. With severe celiac it can take a year or two to really recover from the autoimmune damage. Also some people need a super-careful gluten-free diet. They just don't heal if they are exposed to gluten cross-contamination at restaurants or eat too many processed foods with traces of gluten. If you're sure you're doing the diet right you may need to eliminate dairy, or possibly corn and other grains.

Obviously you need to be eating a diabetic diet. Getting your blood sugar under tighter control may help how you feel. There is also growing evidence that eating a high-glycemic diet that requires you to produce a lot of insulin worsens inflammation.

0

Share this post


Link to post
Share on other sites

Your cholesterol and blood glucose numbers indicate metabolic syndrome. Gluten-free diet will help but will probably not entirely solve that problem. You might consider eliminating sugar, ALL grains, starchy vegetables like potatoes, yams, sweet potatoes, etc, and also dairy. Check out the wiki on "Paleolithic diet" for more info. I hope you feel better.

0

Share this post


Link to post
Share on other sites

Thank you all for the replies. They did help to answer my questions. I have been gluten free for three months now. I am extremely careful with making sure that there is no cross contamination and I rarely eat out anymore. Actually the only restaurant I eat at now is a Chinese place where we've gotten to know the owner and she personally makes sure that what I get is gluten free.

I have been working hard on eliminating dairy from my diet. I'm doing okay as far as actual milk is concerned but honestly, chocolate is my weakness. Put a bag of m&ms in front of me and 9 out of 10 times I won't be able to say no. I try but it doesn't always work. It's a work in progress.

I'm doing research into low carb foods now, seeing as my doctor recommended that to bring down my sugar level and the triglycerides. He's also given me 4 months to loose 10 pounds. I'm sure that will help as well.

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
      104,644
    • Total Posts
      921,583
  • Topics

  • Posts

    • The first two tests (at least in the US and most of the EU) have been replaced by the DGP tests (at the bottom) of GFinDC's list of celiac tests.  Not all celiacs test positive to the common Screening TTG.   The TTg is good and catches most and it was cheaper to run the best one (it is all about the money), but researchers realized they were not catching all celiacs.  Here is a link to the University of Chicago's celiac website.  When I was diagnosed three years ago, this site recommended just the TTg (as did the American GI Association).  Now they have expanded the list of celiac tests.   http://www.cureceliacdisease.org/screening/ Luckily, my GI must have just attended a GI conference and he ordered the complete panel for me.  ($400). It paid off.  Only my DGP IGA was positive and the rest of the blood panel (including the popular TTG test) was negative.  My biopsies revealed some severe intestinal damage.  My new health provider only allows PCP/GP doctors to only order the TTG.  So, if I want the follow-up testing to see if I have improved or had a gluten exposure, I must go to my New GI.  Yep, it is all about the money!   Keep eating gluten and make sure your  GI takes four to six samples during the endoscopy.  Maintain copies of all your results.   Your symptoms?  Yes, there are over 300 celiac disease symptoms.  celiac disease does not just affect the gut, but mis-informed and those who do not keep up with the latest in medical, do not seem to know that!   Do not give up!  
    • It's great to hear from you, Nightsky.  Glad to also hear of your steady progress.  Living gluten free is definitely a learning process, and even the baby steps are times to celebrate.  Wish you all the luck in the world as you continue to heal for the glutenization.  
    • Hi Nicky, When you first go gluten-free your symptoms often do change.  Feeling better or worse is possible.  The healing process is a major change in our gut and that means a big change in the gut flora is likely,  which can cause symptoms by itself.  Additionally the immune system doesn't stop making antibodies on a dime.  the immune system keeps working  to defeat the gluten invaders until it is darn good and ready to take a break. You really shouldn't start the gluten-free diet until all testing is completed.  That includes a full celiac disease panel and an endoscopy with biopsy samples.  It's much easier to complete testing while still a gluten eater than it is to stop gluten and go  back on it for testing later.
    • Hi Kircket, Welcome to the forum! Yes, he could be wrong.  Not everyone passes the blood tests.  And they are just one part of the diagnostic process anyway, although an important one.   Did you have the complete celiac antibodies panel? 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 If you didn't have the full celiac disease antibodies test panel, I'd insist on getting it done.  There have been numerous people on the forum who tested positive on one antibody but not on others.
    • Three years ago I lost about 40kgs (Aussie lol) by better diet & exercise. All was going great til I stopped losing. I upped my exercise but bizarrely started gaining weight. One night a week of not being able to sleep soon became two, then virtually every night with either 1-2hrs tops or none at all. These weird symptoms started about two years ago, becoming worse in say, the last 9mnths. Then I started to get diarrhea. Occasionally then weirdly 2-3 days with multiple occurences then a day or two with nothing, then back to loose & offensive. My GP ran tests, including the TTga (hope that's  right) antibody blood test. Negative so he tells me that's not it. After 9mnths of this he shrugs and says, "I don't know what it is I've run out of ideas what ideas do you have?" Finally refers me to a gastrointerogist.  Private, of course and can't really afford it but we (my fiance and I) go. Stools and blood samples are ordered, basically bye, see you in a month. I have looked my symptoms up and they seem to point to Celiac. Today we went back. I have been having bloated stomach, sore back and limbs,  lovely burps, constant urination and crushing anxiety attacks folowed by depression (which I have never had before in my life). Admitted over the last weekend I didn't sleep for two and a half days and found myself hallucinating and crying to just be able to sleep. Mr fancy pants gastrointerogist says," Hey great news, the stools samples rule out parasites and Crohns!" I tell him how excrutiating the last month has been to which he replies, "It's not Celiac disease, (points at negative blood test results). Celiac doesnt present with diarrhea, anxiety and frquent urination all together." I also had a fecal occult blood test which showed positive & notes say are maybe due to a lower gi bleed, and a ct scan that says shows some damage which, in their words, could be due to a condition such as Celiac disease. He has booked me for a double scope as the next step, has a few ideas what it could be (won't tell me because he doesn't want me to be 'anxious'). Told me to consider that all these symptoms could be me just worrying and being anxious. Told him when this started I was not worried about anything, shrugged and said, It could stil have happened, hey, sometimes we never find out what causes it and your just stuck with diarrhea forever." Then as I was leaving he slapped me on the back and said, "Don't worry so much, see you soon." I need to have the scopes done but is it me or are the things I was told today not true?  I would honestly love it not to be Celiac disease but could he be wrong?
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,651
    • Most Online
      3,093

    Newest Member
    Kricket73
    Joined