All Tests Negative For Celiac - Now What

[Confused in Iowa]

I have been getting B12 shots for the last 6-8 months. It was determined that I was vitamin b12 and vitamin d deficient. The only way they found that is at a physical they checked my thyroid which now requires medication. My family dr. was just going to continue with B12 shots (now wants me to get them bi-monthly) however, I pushed the issue that I wanted to know why I was deficient as I was sure I was Celiac. My 15 year old son has Celiacs and was diagnosed 4 years ago. The dr. sent me to a digestive disease specialist. I have so far had a colonoscopy, an endoscopy, the test that you swallow barium and they watch it through your intestines, and last week I had the camera endoscopy. The specialist is thinking I have Crohns disease...the colonoscopy/endoscopy did show some ulcers in my intestine along with some inflammation however, the tests for celiac came back negative.

Just wondering how many people have gone through all the tests that I have, and it shows negative for celiac however they go gluten free and that helps with absorbing vitamins. I'm not currently on a gluten free diet - I eat a lot of the same things my son does such as rice pasta, etc however I still eat regular bread.

Other than not absorbing vitamins, I have absolutely no symptoms. I just would like to stop future testing, go gluten free and then see what the blood levels are. Maybe that's because I've red too much into these testings on the internet and found that the next test if all the above tests are negative, would be a bone marrow test - which I definitely would prefer to try it my way with a gluten free diet than to pursue anything else.

[ravenwoodglass]

If your done with celiac testing do give the diet a good strict try. It won't hurt and it may help a great deal. As you know testing for celiac isn't as accurate as we would like. If you post the actual results from the biopsy that might be helpful. There are times when there are changes that can be seen before the villi are destroyed that some GI doctors don't realize are indications of celiac.

If I had waited for a positive blood test I would have been (as my new GI put it) one of those celiacs diagnosed by autopsy. Your body will tell you the answer as long as you are strict with the diet.

[ScullyFord]

I'm in Iowa too and just on the front end of trying to diagnose these problems. Can you give me a clue of what this will all cost? Endo, colonoscopy, etc. Ballpark number? I have health insurance but concerned about copays and trying to get it all done by end of year.

I've suspected for several years (problems with digestion, migraines, bone pain, low Vit D, Low iron, low ferrous iron, early menopause at 40 and all problems related with that, etc..) but am now finally headed to the GI. Tired of treating the symptoms and looking for a root cause.

Of course I'll do whatever tests necessary regardless of cost.

[Skylark]

@Iowa - There is no harm in trying the diet with all your tests done. With a celiac son it sounds very sensible to me.

@Scully - Trying the diet is free if money is an issue. Some people are more bothered by the lack of a firm diagnosis than others. If you're willing to trust your body you could go with a celiac blood panel but skip the more expensive endoscopy.

[shopgirl]

I'm in Iowa too and just on the front end of trying to diagnose these problems. Can you give me a clue of what this will all cost? Endo, colonoscopy, etc. Ballpark number? I have health insurance but concerned about copays and trying to get it all done by end of year.

I've suspected for several years (problems with digestion, migraines, bone pain, low Vit D, Low iron, low ferrous iron, early menopause at 40 and all problems related with that, etc..) but am now finally headed to the GI. Tired of treating the symptoms and looking for a root cause.

Of course I'll do whatever tests necessary regardless of cost.

Before insurance, my blood tests were a couple hundred but it depends which tests your doctor does. The endoscopy was just over six hundred. I didn't have a colonoscopy since that can't diagnose Celiac. Luckily my insurance covered everything because my doctor was careful to code everything as being medically necessary. Be honest with your doctor about the money and they might be able to accommodate you. Sometimes just the way they code it can make a difference with your insurance company.

But like Skylark said, the diet is free. If you still pursue a medical diagnosis, however, you want to stay on the gluten to make sure you don't get a false negative by eliminating too much of it from your body.

[Confused in Iowa]

Before insurance, my blood tests were a couple hundred but it depends which tests your doctor does. The endoscopy was just over six hundred. I didn't have a colonoscopy since that can't diagnose Celiac. Luckily my insurance covered everything because my doctor was careful to code everything as being medically necessary. Be honest with your doctor about the money and they might be able to accommodate you. Sometimes just the way they code it can make a difference with your insurance company.

But like Skylark said, the diet is free. If you still pursue a medical diagnosis, however, you want to stay on the gluten to make sure you don't get a false negative by eliminating too much of it from your body.

I would agree - if you think you have Celiacs - just trying the diet is "fairly" easy. However following a gluten free diet is not cheap either. However, if you are going to go ahead with any testing you need to be on a regular diet so it doesn't schew the testing.

I have no idea what this is all costing. I'm extremely fortunate to have good healthcare. So far I've only paid my $10.00 co-pay. But that's just so far - no bills have come yet.

I believe they did the colonoscopy on me just to see what else could be going on if it isn't the celiac plus I'm getting to the age and history in the family she thought that I should also have that done.

[ScullyFord]

Thank you for the replies.

I'm pretty sure gluten is my problem. When I don't consume it, I do feel better. When I do, my stomach hurts, I bloat out (almost look pg), pain, and "movement" problems.

It's rough going because I've been called a hypochondriac because of the pain complaints. When I'm in pain and fast a meal or two because of it, I'm called anorexic which I'm not either of the two. It's very real pain.

Good to know I can skip a colonoscopy!

I'm eating a little bread everyday and have 2 weeks to go...but it's very very painful. My insurance pays no labs.

[Marz]

Doctors nowadays... Seriously, when your son was diagnosed, they should have immediately sent you for blood tests (If they didn't they are morons, since it's hereditary....). If you have any other children, there's a chance they also will develop full-blown celiac disease or just good old gluten-intolerance.

Even if the tests come back negative, with digestive troubles, they should have suggested a gluten-free diet to see if it resolves symptoms.

Doctors are too scared to diagnose Celiac disease - they think it's too troublesome a diet, as if easy eating is more important than your good health.

Honestly, it has changed my life - tried it even after tests were negative and I'm so glad I did.

Try the diet and see if it helps. It'll help your son sharing his diet as well, you can support each other

[Confused in Iowa]

Doctors nowadays... Seriously, when your son was diagnosed, they should have immediately sent you for blood tests (If they didn't they are morons, since it's hereditary....). If you have any other children, there's a chance they also will develop full-blown celiac disease or just good old gluten-intolerance.

Even if the tests come back negative, with digestive troubles, they should have suggested a gluten-free diet to see if it resolves symptoms.

Doctors are too scared to diagnose Celiac disease - they think it's too troublesome a diet, as if easy eating is more important than your good health.

Honestly, it has changed my life - tried it even after tests were negative and I'm so glad I did.

Try the diet and see if it helps. It'll help your son sharing his diet as well, you can support each other

[Confused in Iowa]

I had to practically beg my dr. to check me back when they were first noticing that I was not absorbing b12 and d vitamins. He of course said that it doesn't mean you have celiacs and wanted me to just continue coming in every other week for a b12 shot. Explained that I would rather know what I can do at 45 rather than wait till I'm in my 60's and realize if I would have just done something 15 years earlier, I'd feel much better. Pretty sad when I know more about celiacs and signs of it than my family dr. People think I'm hoping I have celiacs, I tell them NO I'm not wishing I do, however, I would rather have celiac's then some other things that could be wrong. Celiacs I know how to manage and it can be managed - pain in the hinnie, but it's getting easier and easier the more that are diagnosed. I don't think Drs like to diagnose Celiacs because there isn't some prescription drug that they can put you on.

Thank you every one - I have decided that when the results come in Friday from my camera endoscopy, and if they don't find something, I'm going to tell the dr. I want to do a few months gluten free and see what that does with me absorbing vitamins. The signs and symptoms of Celiacs are there, I may as well diagnose myself.

[ravenwoodglass]

Thank you every one - I have decided that when the results come in Friday from my camera endoscopy, and if they don't find something, I'm going to tell the dr. I want to do a few months gluten free and see what that does with me absorbing vitamins. The signs and symptoms of Celiacs are there, I may as well diagnose myself.

If you are done with testing you don't need to wait on the results to start a trial of the diet. I hope you are feeling better soon.