Gave In And Called Dr For Results..................

[2johndeereboys]

And they were negative! I am sooo lost now as to what to do. Should I INSIST on a biopsy?????

I haven't told DH yet he's on his way home. So we can talk about it thsi evening and figure out my next step!!

[IrishHeart]

Want my humble opinion?

I would.

My test results were Negative. Lots of people get a false negative, yet we are celiacs nonetheless.

I think the test is NEG about 30% of the time?

If I had been biopsied properly I might have avoided another whole year of hell. MY (former)GI DOC did an endoscopy but for reasons still not explained to me , he didn't biopsy. I had to get genetic testing done for confirmation.

So, my advice to anyone is...KEEP PRESSING for an answer. If he won't do it and your symptoms strongly suggest celiac, get another doctor.

[love2travel]

Hi, IrishHeart!!

I agree. When my doctor told me he suspected I had celiac I was stunned because I did not get sick or exhibit GI symptoms and so on. However, I now see how all my miscarriages were related. So, I had my scope/biopsies done to prove I didn't have it but sure enough - my results were overwhelmingly positive. The shock has long worn off but the biopsies gave me incentive to be as fastidious as I possibly can be.

This is a very frustrating thing and I feel for you. I am so thankful my GP pushed for biopsies and still does all he can to help me. He also believes my fibromyalgia is real and not in my head - YAY!

[IrishHeart]

Hi, IrishHeart!!

I agree. When my doctor told me he suspected I had celiac I was stunned because I did not get sick or exhibit GI symptoms and so on. However, I now see how all my miscarriages were related. So, I had my scope/biopsies done to prove I didn't have it but sure enough - my results were overwhelmingly positive. The shock has long worn off but the biopsies gave me incentive to be as fastidious as I possibly can be.

This is a very frustrating thing and I feel for you. I am so thankful my GP pushed for biopsies and still does all he can to help me. He also believes my fibromyalgia is real and not in my head - YAY!

Hi love2!!

Ditto for me... 4 miscarriages and then, all the dozens of symptoms I developed over the years were still not taken seriously. Until I withered down to nothing.

And yes, a good doctor will always believe that a patient's pain level is what she says it is!

Why would we make this stuff up???!!

[nora-n]

We have had some cases here where the tests really were positive, and one case where the hospital used the wrong reference range, so you need to get ahold of the written test results.

In the case of the wrong reference range, they figured out here that the hospital had been telling patients for a while that the tests were negative, whereas they really were positive since they used the wrong reference range. So one has to research the ranges too...

[bbuster]

OK - I have a different answer from the other posters so far.

Firsy of all, I have not been in your situation. My son's bloodwork and endoscopy were all positive, although not strongly so. (I hope that means we caught it early?? We'll never know because he did not have classic symptoms).

If it were me, I would ask myself "do you really need a formal doctor's diagnosis?". If you do for insurance purposes, or for some other reason, by all means seek another doctor. (I would probably seek another doctor regardless, but when you live in rural areas your choices can be limited).

If the only reason you want a diagnosis is "to know", I would start eating gluten-free. When my son was first diagnosed, they referred us to a dietician for consultation, and insurance covered that. But honestly, I already had more information from the internet (a LOT from this board) than she did. So I can't say I gained anything from that visit. (Never went back.) We went to great lengths to see a pediatric GI specialist from Kansas City. In the 3-4 visits we had with him after he did the endoscope, all he did was look at my son's chart, poke his stomach a few places, ask how he was doing, and tell some jokes. Seriously! So I just continued to get my son's Ttg checked at our regular family doctor's office, every 6 months until we went from positive to equivocal to negative (2 negs in a row) and then we backed off to once a year, which we still do as part of his physical. And we don't see the GI any more - I see no point in it.

Right now there is no medicine to cure or treat Celiac, so you don't need a doctor for prescriptions. Many people live their lives as gluten-free without a doctor's note.

And in the future if your circumstances change and you somehow must have that diagnosis, I don't think it takes that long after resuming eating gluten for the body to respond for the doctors to see.

Wish you well with your choices!

Bev

[IrishHeart]

Of course, you do not need a diagnosis to go gluten-free however, some people need a diagnosis because they need to treat other autoimmune diseases or they need follow up care with vitamin deficiencies and it is good to have someone reliable to work with you. I was very deficient in Folate and never would have known that without a test and I needed prescription strength folic acid. Some need B-12 injections, and so on...

Some doctors will drag their feet running those tests if they have "no good cause". I know from experience.

For example, I need a bone density scan every 2 years and having a celiac DX will ensure I get it.

It also seems to have "altered" the way I am treated now--because those doctors sure as heck made mistakes with me for 3 years--and they are not going to mess up again.

I wish he HAD done the biopsy when I was so ill so I could make sure there's progress down the road. I'm not eating gluten again to do it now.

I'm just sayin.

[love2travel]

Of course, you do not need a diagnosis to go gluten-free however, some people need a diagnosis because they need to treat other autoimmune diseases or they need follow up care with vitamin deficiencies and it is good to have someone reliable to work with you. I was very deficient in Folate and never would have known that without a test and I needed prescription strength folic acid. Some need B-12 injections, and so on...

Some doctors will drag their feet running those tests if they have "no good cause". I know from experience.

For example, I need a bone density scan every 2 years and having a celiac DX will ensure I get it.

So true. I definitely needed a diagnosis - not just to believe I have Celiac but it turns out that my fibromyalgia was diagnosed as a result. Not that there is a lot I can do for that, anyway, but it sure answers a lot of questions I had. Many pieces of the puzzle are now fitting together. It also made my family members' decision easier to get tested themselves. One didn't particularly want to get tested but that changed when I had a definitive diagnosis. If I didn't get the biopsies I very likely would not have gone gluten free (and could have resulted in all sorts of nasties in the future) because I had very little incentive to do so.

[lizard00]

My bloodwork was negative, too. I didn't do things the "right" way, but in the end my doctor diagnosed me with celiac. I had an EGD on Monday, and included was biopsies to make sure that I am as my doctor put it, celiac free. Makes me sorta wish that I had biopsies from earlier on to have something to compare it to. I don't need the paperwork to stay gluten-free, but in this case, it would've been nice as a reference.

Do what you feel is best for your health.

[Jestgar]

For example, I need a bone density scan every 2 years and having a celiac DX will ensure I get it.

I'm curious why you need a bone density scan every two years, and why you'd be willing to expose yourself to that much radiation.

[IrishHeart]

I'm curious why you need a bone density scan every two years, and why you'd be willing to expose yourself to that much radiation.

Actually, the radiation is so low that no protective shields are even necessary for the patient or the x-ray technologist. In fact, the radiation is the same level in the background radiation you receive flying in an airplane from New York to California. That is only 10% of the radiation exposure of a chest x-ray.

Actually, I am hoping I won't need another one at all. Now that I am gluten-free! BMD is checked in post-menopausal women who have had hysterectomy or osteoporosis in the family.

The GYN is monitoring me for osteoporosis because I had an early hysterectomy, I had a major vitamin D deficiency and since being ill and in chronic pain for 4 years, sadly, I am not able to do much in the way of weight-bearing exercise like I used to. I am hoping when I get my lost muscle mass and strength back that will change. I had one in 2009 (before Diagnosis) and in just 18 months, my bone density suffered drastically. Not osteoporosis yet, thank God. Perhaps, it will reverse for me now that I am absorbing food properly.

For me, it was also a diagnostic tool for another doctor who was not at all convinced I had malabsorption going on.

Not everyone needs to have this test done. But I did. Having the celiac disease diagnosis allowed it to be done without hassle from the insurance company.

A long answer to your query, but there it is!

[sreese68]

My neurologist just diagnosed me this week with celiac despite negative bloodwork and no biopsy. I brought him a written record of what I did for my gluten challenge (eating it for 4 days) and what my symptoms were. He already knew about my low vitamin D levels and my neuropathy, and he was the one who told me to try gluten-free. I asked him if he thought I needed a biopsy to determine if I had celiac or was gluten intolerant. He said he thought it was unnecessary since it's too easy to get false negatives due to the length of the small intestine and due to biopsies not always being read correctly. (He said a biopsy can be like looking for rust on a car. The top of the hood may look great while the underneath is completely rusted.) So based on my pre-gluten-free diet symptoms and my response to taking it out of my diet and putting it back in, he diagnosed celiac.

If I were you, I'd ask around locally, google, search this board to find a doctor who has lots of knowledge about celiac. Pay them a visit. If you haven't had your vitamin levels check, then request it. Even if you don't get a biopsy, that doctor will then have a record of your symptoms pre-gluten-free.

Then you could go gluten-free. You should keep a record of what you eat and your symptoms. Note if they improve. I made myself a weekly chart, so I can just fill in the blanks. Keeping track of what you eat will help you if you continue to have problems since other food intolerances pop up for many people. I could have tracked down my brown rice intolerance quicker if I had done this the first 3 weeks I went gluten-free (I react to other foods 2 days after ingesting them I discovered). After you've been gluten-free for awhile, try a gluten challenge and write down ALL symptoms no matter how minor. Bring your records to your doctor and go from there. I know not all doctors are as open minded as mine, but even if yours didn't listen to you, at least you'd know for yourself based on your written records. And having it all written out is good for talking to family members about celiac, as I'm finding out...

[IrishHeart]

My neurologist just diagnosed me this week with celiac despite negative bloodwork and no biopsy. I brought him a written record of what I did for my gluten challenge (eating it for 4 days) and what my symptoms were. He already knew about my low vitamin D levels and my neuropathy, and he was the one who told me to try gluten-free. I asked him if he thought I needed a biopsy to determine if I had celiac or was gluten intolerant. He said he thought it was unnecessary since it's too easy to get false negatives due to the length of the small intestine and due to biopsies not always being read correctly. (He said a biopsy can be like looking for rust on a car. The top of the hood may look great while the underneath is completely rusted.) So based on my pre-gluten-free diet symptoms and my response to taking it out of my diet and putting it back in, he diagnosed celiac.

Awesome!! You do have one smart and gluten-savvy doctor there! GOOD for you!! I saw 3 neuros in 3 years of burning nerve pain and massive muscle mass loss and not one of them looked at all my symptoms and saw celiac. Then again, neither did the GI doc I saw for over 10 years with "IBS"....or my own PC doc with celiac children...until I went back in with genetic results. Now, he GETS IT.

See why I am such an advocate for pushing for an answer?

[sreese68]

Awesome!! You do have one smart and gluten-savvy doctor there! GOOD for you!! I saw 3 neuros in 3 years of burning nerve pain and massive muscle mass loss and not one of them looked at all my symptoms and saw celiac. Then again, neither did the GI doc I saw for over 10 years with "IBS"....or my own PC doc with celiac children...until I went back in with genetic results. Now, he GETS IT.

See why I am such an advocate for pushing for an answer?

He's an amazing doctor! He's absolutely brilliant and could be typecast in a movie as a research scientist. He also said that he routinely gives vitamin B12 to people who's levels are considered normal (like 240) and sees improvements. Said that he thinks the current minimum recommended level is too low for many people. I love that he listens to patients and thinks outside the box!

My GI on the other hand had no clue!! Said I couldn't possibly have celiac because I get constipated and never get diarrhea. And that he doesn't know of celiac causing problems outside the gut. Glad I didn't listen to him!

[IrishHeart]

My GI on the other hand had no clue!! Said I couldn't possibly have celiac because I get constipated and never get diarrhea. And that he doesn't know of celiac causing problems outside the gut. Glad I didn't listen to him!

OMG! the amount of information they DON'T know about celiac is astonishing!

Extra-intestinal symptoms are MORE prevalent that GI issues. The long list of my strange --and seemingly unassociated--symptoms was what delayed my diagnosis. ARRGH!!

Constipation IS a celiac symptom...this guy needs to be told he is WRONG!!

glad you are in good hands now!

[2johndeereboys]

Thanks sooooooo much to all of you who posted!!!! I am so sorry I have been off the boards for the last couple of days but I have not been feeling well. I am better now and after talking to DH we have decided that I will call my Dr on Tue and demand that I see a GI! Hopefully then he/she will order a biopsy.

I will call medical records and request a copy of my test results. that was a good idea!!

I am still having symptoms if you don't mind can I list them here for yall the REAL experts: Chronic diarrhea for almost a yr now,4 or more BM's a day, fatigue, bloating, gassy, stomach pains/rolling stomach and my Vit D count was VERY low & mouth sores.

Now does that sound like Celiac to yall? I am convinced I have it or something. Something is going on and I guess it is up to me to find out what!

Thanks so much again I truly appreciate all your input!!!!

[sa1937]

Thanks sooooooo much to all of you who posted!!!! I am so sorry I have been off the boards for the last couple of days but I have not been feeling well. I am better now and after talking to DH we have decided that I will call my Dr on Tue and demand that I see a GI! Hopefully then he/she will order a biopsy.

I will call medical records and request a copy of my test results. that was a good idea!!

I am still having symptoms if you don't mind can I list them here for yall the REAL experts: Chronic diarrhea for almost a yr now,4 or more BM's a day, fatigue, bloating, gassy, stomach pains/rolling stomach and my Vit D count was VERY low & mouth sores.

Now does that sound like Celiac to yall? I am convinced I have it or something. Something is going on and I guess it is up to me to find out what!

Thanks so much again I truly appreciate all your input!!!!

It's always a good idea to pick up copies of your test results. To me it sure sounds like it could be celiac. Even with negative test results (and false negatives are all too common) with your GI symptoms it would warrant a referral to a GI dr. Hope you can get that appointment!

[IrishHeart]

A year of diarrhea is a big red flag. I had it BAD myself...then, I would go the opposite and be backed up for days..UGH!

You are right...something is going on. You are probably dehydrated as a result. Drink a lot of water.

Your other symptoms are also common to celiac.

As I said, keep pushing until you get an answer. You do not need to suffer this way.

Even if the biopsy is negative (yes, that happens a lot, too because the small intestine is really quite a large area and it can be hit or miss down there when taking samples) you can always go gluten free on your own and see if it helps.

There are other ways to help you straighten out your GI tract. Probiotics are a good start.

Good luck, hon..and keep us posted !

[ravenwoodglass]

Please know that false negatives on testing are not uncommon. If you are going to persue a biopsy do keep on gluten until that is done then the day of the biopsy go gluten free strictly. You don't need to wait for the results. If the doctor will not biopsy for some reason then do give the diet a try anyway. You do sound like you could be one of us. I hope the Dr. gets you in quickly. If they give you an appointment that is a long time away do ask to be put on the cancellation list so you may be able to get in sooner.