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Question About Testing

eerickso

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eerickso Newbie
eerickso
Posted

I'm new and have been reading as much as I can but still have questions about testing. My doc is actually testing for a lot of things but my own suspicion is that I'm dealing with Celiac. Anyway, I've had blood work done and just got the results today from the lab, but I'm not sure how to interpret them. Everything looks fairly normal except for RBC/WBC/Hemoglobin/Hemocrit/Platelets that are out of line and one of the Celiac tests. My Gliadin (Deamidated) AB IGA shows as 46 units, with >or=20 being 'Antibody detected'. How definitive is that?

 

I have an endoscopy scheduled for tomorrow. I don't eat much gluten (at least not in terms of obvious food choices) but have been sick as a dog for weeks now - particularly in the mornings.  I also had a CT scan with contrast done on Tuesday and am awaiting those results as well. I had been on a high protein diet for a number of months and all of my symptoms seemed to kick into high gear as I moved to weight maintenance and started adding grains and dairy back in.

 

My blood work does look like it's negative for Lyme and Lupus, so that's a good thing!

 

ETA: After doing more research I guess I've answered my own questions. At least I can start adjusting my diet tomorrow and hopefully start feeling better.

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1desperateladysaved Proficient
1desperateladysaved
Posted

Here's hopes for you to have a healthy future.  I am so glad you can go gluten free soon. 

 

D

eerickso Newbie
eerickso
Posted
  • Author

Here's hopes for you to have a healthy future.  I am so glad you can go gluten free soon. 

 

D

 

Thanks so much! I'm lucky to have been able to get the testing scheduled pretty quickly once I finally narrowed down my own search for a dignosis and went to the right doctor. I had actually started with my GP and then a neurologist (due to all the whacky neurological symptoms I was having) and it seemed like the latter wanted to test for everything *except* celiac. I've been trying to piece this all together for quite awhile now.

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

welcome!

 

make sure they take at least six samples from the small intestine, though the more the better!  Good luck tomorrow, and let us know how it goes  :)

eerickso Newbie
eerickso
Posted
  • Author

welcome!

 

make sure they take at least six samples from the small intestine, though the more the better!  Good luck tomorrow, and let us know how it goes  :)

Thanks! I'll be back with a full report. It's funny to be hoping so much for a clearly positive set of test results.

eerickso Newbie
eerickso
Posted
  • Author

Thanks! I'll be back with a full report. It's funny to be hoping so much for a clearly positive set of test results.

Well, the endoscopy is behind me so now I just need to wait 2-3 weeks for the results. Either way the doctor said I had to start 100% gluten free today and I'm looking forward to finally starting to feel better. I had planned to change my diet once the testing was done anyway; I'm tired of being sick. As it was I couldn't bring myself to eat much more than an English muffin each day during the testing. I can't imagine how sick I'd be if I were someone who normally ate a lot of breads, cookies, pasta, etc. My doctor pointed to some abnormalities in the photos taken during the endoscopy, but said that the biopsies and what was seen under the microscope would be the true test. Either way, the bottom line is the same for me - and even if it comes back negative, I'm going to suspect that it's due to the fact that I don't have much gluten in my diet to begin with. Apparently for me, a bad reaction doesn't take much!

1desperateladysaved Proficient
1desperateladysaved
Posted

Woo HOO!  Glad to hear you are already through testing.

 

I think we understand about hoping for a positive result.  That would mean a diet change will help you to feel better.  That would mean a long list of symptoms that are not "In your head." 

 

Get well, and let us know if you need help with the diet.

 

D

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eerickso Newbie
eerickso
Posted
  • Author

Woo HOO!  Glad to hear you are already through testing.

 

I think we understand about hoping for a positive result.  That would mean a diet change will help you to feel better.  That would mean a long list of symptoms that are not "In your head." 

 

Get well, and let us know if you need help with the diet.

 

D

Exactly! And that's even what I said to my doctor after seeing the blood test results. On the other hand, I am a little concerned about a comment he made about there having to be something else going on if the biopsies are negative since my blood work was so out of and there were some abnormalities noted on the endoscopy. In a way it would be nice to have the diagnosis all wrapped up and all of the symptoms explained - and of course to have them go away. At least there's to CT san to help look for other things in the meantime and I figure its a good thing that I haven't gotten a call in that regard. I also suspect there will be another colonoscopy in my near future unless I start getting better. I'm thinking I'm going to have to stick to very simple food choices since in the last several months the only obvious gluten in my diet has been an English muffin once a day and I was still quite sick.

So far at least I'm not having to deal with nausea after eating although my intestines are still a mess. Guess its just going to take awhile. I'm glad this forum and all of you are here to help along the way!

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

glad to hear everything is complete!

nvsmom Community Regular
nvsmom
Posted

A positive DGP test is pretty specific to celiac disease, and yours was over double the normal limit. I would be willing to bet they'll find signs of damage in the biopsy, but even if they don't you do have a positive blood test as a good reason to go gluten-free.

 

Good luck with the diet and the biopsy results. Welcome to the board.

eerickso Newbie
eerickso
Posted
  • Author

Thanks! Two things noted on my endoscopy that we're visible to the naked eye were a number of "mini ulcers" as well as scalloping of my intestines.

After two and a half days gluten free I'm feeling better in general but still have a lot of intestinal distress particularly in the mornings and overnight. I guess it would be a bit much to expect my intestines to repair overnight. :-)

nvsmom Community Regular
nvsmom
Posted

Thanks! Two things noted on my endoscopy that we're visible to the naked eye were a number of "mini ulcers" as well as scalloping of my intestines.

After two and a half days gluten free I'm feeling better in general but still have a lot of intestinal distress particularly in the mornings and overnight. I guess it would be a bit much to expect my intestines to repair overnight. :-)

Scalloping often shows up when the damage is fairly advanced...they can't often see it with the eye.

That is great you are feeling a bit better already. Prepare yourself for a slow process of healing, many of us take months to years before we are healed because the body does not stop making autoantibodies as soon as we stop eating gluten.- it can go on for quite some time.

Hope you continue to improve and don't hit any withdrawal. Best wishes.

eerickso Newbie
eerickso
Posted
  • Author

Scalloping often shows up when the damage is fairly advanced...they can't often see it with the eye.

That is great you are feeling a bit better already. Prepare yourself for a slow process of healing, many of us take months to years before we are healed because the body does not stop making autoantibodies as soon as we stop eating gluten.- it can go on for quite some time.

Hope you continue to improve and don't hit any withdrawal. Best wishes.

Thanks. Today was rough. My morning was easier than many but I had more afternoon issues than normally and now am just exhausted and constantly nauseous. On the plus side my doctor called about my CT scan results and although there are a few things to watch nothing truly serious showed up. At least I'm *only* dealing with one disease so far. ;-)

I'm off to read more about the healing process so I know more about what is reasonable to expect. Thanks again to you all for the feedback.

eerickso Newbie
eerickso
Posted
  • Author

I'm about a week and a half into being gluten-free and I can tell that it's going to take awhile to start feeling like my old self again. The intestinal distress is still there but the urgent episodes have dissipated somewhat. The fatigue and nausea are still very much present and I've decided to stop trying to keep everything covered at work and just give myself some time to focus on resting and healing. Trying to work full time - even via telework - was wearing me down. As it was I probably pushed it more than I should have.

After reading more on this forum, I decided to eliminate obvious dairy from my diet (primarily my morning yogurt) and do think that is helping. I've also started taking sublingual B12 and probiotics. (I was already taking a multivitamin, Biotin, and Vitamin D - earlier tests had shown me to be deficient in D.) I think I'm going to put a high priority on finding a nutritionist so I can better focus on ensuring I get the nutrients I need. Right now I'm not feeling like my body has the capacity to do that on its own.

It's kind of ironic that I've struggled with my weight for years and never thought I'd be one to worry about maintaining my weight but that's where I am right now. I weigh at least 25 pounds less than I've weighed at any point in the last 20 years.

Anyway, not too much new but wanted to give a brief update and let you all know I'm appreciative of all the great info here.

1desperateladysaved Proficient
1desperateladysaved
Posted

I'm about a week and a half into being gluten-free and I can tell that it's going to take awhile to start feeling like my old self again. The intestinal distress is still there but the urgent episodes have dissipated somewhat. The fatigue and nausea are still very much present and I've decided to stop trying to keep everything covered at work and just give myself some time to focus on resting and healing. Trying to work full time - even via telework - was wearing me down. As it was I probably pushed it more than I should have.

After reading more on this forum, I decided to eliminate obvious dairy from my diet (primarily my morning yogurt) and do think that is helping. I've also started taking sublingual B12 and probiotics. (I was already taking a multivitamin, Biotin, and Vitamin D - earlier tests had shown me to be deficient in D.) I think I'm going to put a high priority on finding a nutritionist so I can better focus on ensuring I get the nutrients I need. Right now I'm not feeling like my body has the capacity to do that on its own.

It's kind of ironic that I've struggled with my weight for years and never thought I'd be one to worry about maintaining my weight but that's where I am right now. I weigh at least 25 pounds less than I've weighed at any point in the last 20 years.

Anyway, not too much new but wanted to give a brief update and let you all know I'm appreciative of all the great info here.

 

Keep on, keeping on!

eerickso Newbie
eerickso
Posted
  • Author

Thanks. I'm still having a rough time and my doctor wants to also test for Chron's and ulcerative colitis. Nothing would surprise me at this point.

eerickso Newbie
eerickso
Posted
  • Author

Well, had my colonoscopy today and the other boot dropped, so to speak. He thinks I have Chron's (there are discontinuous ulcerations and edema throughout the colon) althought it could be UC. Biopsies should help determine which, and I also have an order for a blood test.

 

I'm so tired of the pain, nausea and fatigue and beyond exhausted from trying to find something I can eat without doubling over and running for the bathroom. I'm on a number of drugs now that hopefully will start helping to calm things.

nvsmom Community Regular
nvsmom
Posted

:( Oh no. I the drugs help you soon.

eerickso Newbie
eerickso
Posted
  • Author

:( Oh no. I the drugs help you soon.

Thanks. It's been a roller coaster lately. I was put on prednisone for the short term but I couldn't tolerate the side effects for more than 3 days. I'm hoping the longer term drug is able to kick in fast. I finally did have a relatively good day today and even got out into the sunshine for a couple of hours. Hoping this sticks and I don't do my normal one step forward, two steps back!

GF Lover Rising Star
GF Lover
Posted

I really hope the long term drug works well for you.  Take things easy.  Good luck in healing.

 

All the best to you.

 

Colleen 

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