Blood Test Positive, Biopsy Inconclusive

[lk917]

What is my next step? I have been having migraines, missed period, low vitamin levels and constipation. I saw a neurologist for the migraines and in the blood tests celiac tested positive. I was referred to a GI and the biopsy came back inconclusive with high lymphocyte counts. What does this mean? Do I not have celiac? What should my next step be? I was relieved to finally find out what is wrong with me but now I am back to square one.

[Lisa]

Welcome to the Club! You are not back to square one, you're going to take your first steps toward recovery.

Positive bood work is diagnostic, in itself. A biopy can miss affected areas, and cannot rule out Celiac.

Now you can start the gluten free diet. A positive dietary results is confirmation as well of Celiac.

Take a walk around this place. It will become your new best friend.

Welcome

[JillianLindsay]

You are definitely not back to square one my dear. I would definitely recommend starting the gluten-free diet to see if it helps. If you have +ve blood work, lymphocyte overgowth and a positive dietary response, then your DR will likely diagnose you based on those facts.

With my limited medical knowledge, I believe that lymphocytes are a type of white blood cell lining your stomach and small bowel. Mine were high too, meaning that we have an immune-mediated response to something we are eating (very likely gluten, based on the bloodwork).

Try the diet for at least 6 months, then go back to your GI doc for another blood test. Your tga levels should decrease if you stick to the diet and you can also report whether or not you are feeling better on the diet. Some people see an immediate improvement and for others it takes months, so be patient with yourself while you are healing. There is a lot of great information on this site and around the 'net so take the opportunity to educate yourself and get better

Good luck!

Jillian

What is my next step? I have been having migraines, missed period, low vitamin levels and constipation. I saw a neurologist for the migraines and in the blood tests celiac tested positive. I was referred to a GI and the biopsy came back inconclusive with high lymphocyte counts. What does this mean? Do I not have celiac? What should my next step be? I was relieved to finally find out what is wrong with me but now I am back to square one.

[tarnalberry]

Definitely far from square one. You know that your body is reacting to gluten (via the blood tests). You know they didn't see any damage in your intestines, but you don't know how hard they looked, or how "destroyed" something had to be to count for damage. As everyone else said, try the diet. Six months would be fabulous, but promise yourself at least three, if six sounds daunting.

[nmlove]

My son was just diagnosed (+ bloodwork, + biopsy). Before he had the biopsy we asked his GI what could it mean if he had a negative biopsy. His response? To do a genetic test - that would rule out celiac or have it in the running (meaning his biopsy would eventually be + if it was celiac). With or without the genes, he'd still have to go gluten-free because of the + bloodwork. He did say if it wasn't celiac disease there were a few other things it could be but we didn't go into detail. Hope this helps. Whatever road you go down, gluten-free will have to happen with the + bloodwork.

[lk917]

Thank you so much for the replies! The GI did say recommendation to start gluten free diet. I just didn't know how accurate the biopsy was and if it was just another try at something that was a guess. This is my fourth doctor and I have been told that I was just stressed, needed antiseizure medicine to stop the headaches, depressed and now I am here. I am seriously drained from doctors guessing at the wrong thing. From what it sounds like the blood work is enough to confirm celiac. From what I read online it seemed like both positives were required for diagnosis. I am relieved to find out that may not be the case.

So one more question. How does insurance work with dietians? Are they typically covered? I also read that gluten free food can be deduction on taxes. Does anyone know about that?

THANKS AGAIN!

[Imanistj]

Hi lk917,

We are in very similar boats. I saw my fibromyalgia MD with complaints of greatly increased pain and fatigue. He ordered blood tests and said one showed I had autoimmune liver disease! How did my liver become part of the problem? I wanted to see a liver specialist so the fibro doc sent me to a gastroenterologist who is also a hepatologist. He ordered some blood work and said I had celiac disease! I was still worried about my liver and now the office staff said I should see a dietitian and go on a gluten free diet. I am a retired RN and I continued to worry more about my liver than the diagnosis of a new disease. I spent hours everyday researching celiac disease, autoimmune liver disease and the gluten-free diet. When I next saw the hepatologist he said I did have celiac disease because I had a positive blood test for transglutaminase. I was in denial and extremely angry and I was still worried about my liver. The doc said my liver function tests were fine and I needed to follow the gluten-free diet. He ordered an endoscopy to look at my small intestine and take biopsies. Next I was told my small intestine looked fine and soon I was told the biopsies were all normal. So, I am positive by blood tests (transglutaminase and genetics), and negative by biopsy. That's all! He wants to see me in six months, I am to have a bunch of blood tests every six months, and I have to stay on a gluten-free diet forever. Oh--I asked him if I have autoimmune liver disease and he shrugged me off and said the test is a "marker" for that disease. My liver tests are all fine and I am not to worry about that. I was overwhelmed when I left his office. I wanted to cry. How did all this happen when all I did was complain to my fibro doc that I was hurting and exhausted?

Nobody ever resisted the damn gluten-free diet any more strongly than I. But--what else can I do? I write often to this forum and everyone has been great offering answers and suggestions. There is a celiac support group about 45 minutes away and I plan to join and pick their brains. Right now my major quest is to find a gluten-free bread I like. I have no choice but to stay on the diet, take the supplements (B12 and iron) and wait to see if I feel better. Because I didn't have the terrible diarrhea problems it isn't as easy for me to see any improvement due to the gluten-free diet. I'm doing what I am supposed to and hoping to stop experiencing inappropriate pain and fatigue. Time will tell. Doing the gluten-free diet 100% is tricky and difficult. I was a nurse and I have plenty of free time to search the web to learn the diet, so I haven't seen a dietitian. I do know that when I became diabetic my insurance covered a session with a dietitian so she could suggest how I could follow the diabetic diet and still keep as much of my usual diet as possible.

Find a support group so you can talk to other celiacs face to face, read all you can from this forum, and ask all the questions you need to ask. Tell this forum which supermarkets and health food stores are in your area. Other members who are familiar with those stores will have suggestions for you. There aren't any celiac disease pills so all we can do is avoid gluten. I can't wait to see how I do when I am retested in six months. If I still feel any doubt about my current MD I will ask for a second opinion then.

I hear youl!!!! This is a difficult adjustment. There is help with the cost of the gluten-free food if you have enough medical deductions to claim on your income tax. You need to have a statement from your MD for a diagnosis of celiac disease and then you can claim the difference between what you have to pay for gluten-free food and what a similar gluten containing food costs. Every time I spend $5 for a mix to make gluten-free bread I note on the register tape that a regular loaf of bread was on sale that day and cost only 99 cents! You can write off the cost of your travel to your doctor, you may be able to claim the cost of any food you mail order and if you have to go to a distant city to find gluten-free food you can also claim that cost. Lots of record keeping but I am determined to save as much of the cost of the gluten-free diet as possible.

Good luck,

Nancy

[lk917]

Thank you, I will look up support groups. I am lucky because I have a Whole Foods and Trader Joes close to me. They are running my blood again on Monday for hormones, vitamin levels and celiac so I cannot wait to see the difference from first test. I really haven't had any migraines since I have taken the large amounts of Vitamin D and B12. That is a relief and time saver itself. I went to a birthday dinner tonight at Flemings and before was very stressed on what to order. BUT they had a gluten free menu and all was fine. I think it will take research and time. I agree at first it is frustrating because 1) I can never have McDonalds fries again and 2) I am an impulsive eater. I just have to change the way I eat by planning ahead of time. Thanks for the help! I really appreciate all the support!!