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New To Forum With Blood Work Questions...
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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.

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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

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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.

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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.

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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.

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    • Your body has been used to ingesting and has been coping with the gluten in its systems.  DON'T PANIC because your body is doing it for you.   Seriously now, the medical field has a technological term defining when a system is used to working a certain way/routine.  When that is either disrupted or changed, it could take a while for the body adjust to a different way of doing things.  Another factor in the increase in symptoms could possibly be that your body is starting to "clean house".  It's trying to get rid of the amounts of gluten hiding out in all its nooks and crannies.  It is going to be a long term process.  It's like cleaning out a vacuum hose or other household item that is just caked with gunk.  The first cleaning gets rid of a large portion of the gunk and ick.  The subsequent cleanings gets rid of more and more ick but in lesser amounts. I thought I was going to go crazy those first few months, but things are a lot better now. (I am about 10 months gluten free).  I still have moments of brain fog and even episodes, but my body is getting closer (and more used to)  to having a cleaner "household item".  I know it's tough at first with the increased onslaught of symptoms, but hang in there.   You may want to keep a journal of all that you ingest or come into contact with for a time to track anything that could exacerbate symptoms.  (For me, my episodes are chemically triggered as well.)  If for some reason a few months down the road, you still have large amounts of symptoms it would be a good idea to visit your GP again just in case there something else that is going on.  
    • I would love some help! After 20ish years of being misdiagnosed with IBS, I was diagnosed with celiac disease (positive blood test for tTG IgA and positive duodenal biopsy) ~ 6 weeks ago. Of course I've gone completely gluten free, and I've been crazy paranoid careful not to ingest any gluten. I've also completely avoided all oats (even certified gluten free) and cut out lactose (due to transient lactose intolerance... because I don't have villi) . But now I feel WAY WORSE. I've had abdominal pain every single day, which ranges from mild aching to severe 10/10 laying on the floor crying and vomiting pain. I understand that it takes a long time to get better, but why would I get so much worse? My best guess is SIBO, but I can't imagine that it could cause such extreme symptoms, can it?  So my question to you fine folks is: did this happen to anyone else? Have you gotten sicker after you changed your diet? Is this normal?  For arguments sake, lets assume that I did not ingest any gluten to cause these symptoms... Thank you for your help!
    • Thanks very much Cyclinglady. Yes, it is Kaiser. I doctor said the GI think it is unlikely to be celiac deisease (he did not say how he came to this conclusion), but he would be happy to do an upper endoscopy for me. I did some look up online, this procedure should be low risk. Still feel a little hesitate while reading the potential risks :(.
    • I would suggest you test your daughter through a doctor. The Enterolab tests are not recognized as accurate or reliable by the medical profession. See this link from the Chicago Celiac Disease Center: http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/
    • Sorry.  Something is wonky with either my connection or celiac.com! Your results are not specific...borderline.    That is why your PCP should refer you to a GI for further celiac blood tests and a possible endoscopy.  I recognize the lab report form.  Kaiser?  If so, a PCP can not order a full celiac panel.  Only a GI can do so.  Why bother?  Because if you test like me, the TTG tests are always negative.  Request the EMA and the DGPS test via a GI.   Do not be fooled by a lack of abdominal symptoms.  I was only anemic -- no abdominal issues at all.  Constipation is a symptom.  Your PCP is thinking is just historical Classic celiac disease symptoms.   Please email your doctor for the referral if you think you might have celiac disease and want a solid answer.    
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