Can Anyone Help Me?

[No Name]

Hello.

I'm sure a new person pops up here with my questions, everyday and I apologize if that is the case.

I was wondering if anyone could shed some light on a few things for me.

LONG STORY short:

In 2002 I was diagnosed with Celiac Sprue.

In 2003 I went on a Gluten Free diet (to the best of my ability)

In 2007 (November) I went for a physical with my primary care, and he asked me how I was doing with my gastrologist. I mentioned I hadn't been there in over 5 years. He told me I should go at least once a year.

In 2008 (last month) I went to my gastrologist. She took my blood work and said she was sending it to a special lab in California that only deals with Celiac disease.

Last week (Friday) she called me and said the blood work came back negative. That I don't have the gene for celiac disease. We scheduled a colonoscopy and the other procedure (don't remember the name) and also a biopsy.

My doctor said there's a 10% chance that people without the gene, may still have the disease.

I'm trying not to get my hopes up high, but I really hope I don't have celiac disease.

Can anyone share similar experiences or any knowledge of my situation?

How reliable is my negative blood work?

Could it have been negative because I was gluten free for about 5 years (although eating eggrolls and certain things during the 5 years, not realizing they were gluten, never bothered me)?

Am I nuts to think I don't have celiac?

Any info is greatly appreciated.

Thank you,

Vic (No Name...I don't know why I picked that name. lol)

[larry mac]

Sounds like the initial diagnosis of Celiac Sprue/Celiac Disease was not positively made. What were the tests used to make this determination? Celiac does not go away. If you had it then, you've got it now.

best regards, lm

[jerseyangel]

I have a couple of questions

How were you diagnosed and did you feel better while on the gluten-free diet?

It is possible to have Celiac and not posess either DQ2 or DQ8, and your blood test certainly could have been affected by eating mostly gluten-free for years.

[babysteps]

All my tests are "normal" but my dietary response to gluten is quite strong - most symptoms you can think of except the special skin condition DH (and some days I can convince myself of very mild signs of that, too). All of which go away when I avoid gluten.

Many people on this forum, and some doctors, view positive test results as conclusive but negative test results as inconclusive, especially if your diet is gluten-free as antibodies are present only if gluten is present, and even a damaged gut heals itself in the absence of gluten (meaning after many years of eating gluten-free your biopsy could be negative even if you are celiac).

So, good luck with the new tests and finding some answers. If you *do* decide you may not be celiac, I would try introducing gluten in a very controlled, careful way so you don't make yourself too sick if it turns out you are sensitive to dietary gluten, whatever the tests say.

I figure we know our own bodies best, and if we decide to be more cautious than a dr. says to be, that's okay (as long as we don't get all hypochondriac or OCD or something).

[loraleena]

If you are gluten free than your tests will be negative. Some docs do not seem to know this! You still have Celiac. Sorry!!

[MelliDuff]

If you are gluten free than your tests will be negative. Some docs do not seem to know this! You still have Celiac. Sorry!!

Even blood test for the antibodies?

[Ursa Major]

Even blood test for the antibodies?

Yes, especially the blood test for the antibodies. If gluten is not causing an autoimmune reaction, then your body will not produce the antibodies. The negative blood test shows that you've been doing a good job being gluten-free, and that you have healed as a result of being gluten-free.

If you now decide that maybe you don't have celiac disease, and start eating gluten again, you may not have an initial, obvious reaction. But you would get sick again eventually. You may not even present with the same symptoms you had before going gluten-free. Maybe then you had diarrhea, bloating, gas and stomach aches. And now you might get depression, joint pain, anemia and hair loss. There are so many celiac disease symptoms, and everbody seems to have a different combination of them.

If you were positively diagnosed with celiac disease, I guess that you had a biopsy and a positive blood test, right? You absolutely CAN have celiac disease without having the (here in America) officially recognized celiac disease genes. Scientists are admitting that there are other genes for celiac disease that need identifying. You doctor is wrong when he says that you don't have celiac disease if you now have a negative blood test and don't have the genes. Of all people, many GIs, who are supposed to be the celiac disease specialists, are quite ignorant about celiac disease. It is pretty pathetic in my opinion.

[No Name]

Thanks everyone for the help and replies.

In 2002 when I went to the gastrologist, I had a Colonoscopy and an Endoscopy.

My Doctor (I thought) said I had Celiac Disease and I should visit a nutritionist.

I figured I had it, and went Gluten Free for 5 years.

Last week, when I visited her for the first time since 2002, she seemed puzzled as to why I was on a gluten free diet. She looked at my file, and said:

"I want to run some blood work and send it to a special lab in California that deals only with Celiac Disease. It's the only lab in the country that does this work. I want to see if you have the gene that you may pass on if you have children someday"

She called me Friday and said "The blood work came in, and it's negative. I want you to come in on the 14th of April, so I can do a colonoscopy, endoscopy, and I'll also take a biopsy. It doesn't look like you have the disease, and if not, we can take you off the gluten free diet"

hearing that, may hopes went VERY HIGH!

So I started asking myself, did I really even have this disease?

I haven't felt any different since being gluten free (niether good or bad).

I've eaten gluten products, for the entire time, not realizing they were gluten (certian candy, eggrolls, etc) and nothing has happened. No rash, no diarrhea. nothing.

Once I realized recently that certian things I had been eating the whole time I was gluten free, were in fact gluten (fruit mentos) I stopped, but when I was eating them, they didn't make me sick (unless it was doing damage to me that I'll realize down the line, but no short term damage)

Now I'm confused!!

[AliB]

Why were you diagnosed with Celiac in the first place? What triggered the diagnosis? What were your symptoms?

[mftnchn]

I think I would request a copy of your records of the endoscopy results from '02 as well as the notes of the doctor. If there was a positive biopsy at that time, I would very much hesitate to go off the gluten-free diet. Celiac can be sub-clinical but cause so many auto-immune issues. Once you have it, it never goes away.

If you were told to go gluten-free without any basis in either symptoms or testing, that was crazy and a mistake.

After being gluten-free for 5 years, neither blood test or endoscopy/biopsy is likely to be positive because you will have healed. Sounds like this GI really is not celiac literate. I would suggest reading more on this forum, and inform yourself thoroughly. Then press the doctor for explanations.

The yearly endoscopy check would be fine--but only to make sure that you are free of signs of celiac--confirmation that your diet is strict enough.

[mommida]

My experience with Prometheus Labs (in California - and does a lot of Celiac genetic tests )

My genetic test came back negative, my biological daughter's positive for both DQ2 and DQ8

after questioning the results ( because basically it is questionable not matching mother to daughter )\

Prometheus response...

genes mutate

could have fallen into the known 2% undected range

and my favorite.... EVERY test has at least a 30% error rate because of the human factor- i.e. sample handling, experience of the lab tech, who did the blood draw, and even as simple as the sample labels.

So this is the test you are making life altering decisions on, and were probably told this test is 98.?? accurate. I found out from personal experience it is not , by the labs admission, 98.?? accurate.

"Silent" Celiac does not have radical symptoms. Other tests show something like anemia, and then further testing can reveal Celiac. Female hormones often make auto immune symptoms much worse.

[No Name]

Why were you diagnosed with Celiac in the first place? What triggered the diagnosis? What were your symptoms?

I'm not sure if I was dianosed with Celiac in the first place. I know, how could I not know? I remember her mentioning it to me. I wouldn't have know what Celiac was if she didn't mention it to me. I think she may have just mentioned it as a possability and I just went gluten-free for 5 years. I know, stupid on my part.

I had diarrhea for a few days. Went to my primary care, and suggested I go see a GI.

If there was a positive biopsy at that time, I would very much hesitate to go off the gluten-free diet.

I didn't have a biopsy taken the first time. only a coloscopy and endoscopy.

My experience with Prometheus Labs (in California - and does a lot of Celiac genetic tests )

My genetic test came back negative, my biological daughter's positive for both DQ2 and DQ8

after questioning the results ( because basically it is questionable not matching mother to daughter )\

Prometheus response...

genes mutate

could have fallen into the known 2% undected range

and my favorite.... EVERY test has at least a 30% error rate because of the human factor- i.e. sample handling, experience of the lab tech, who did the blood draw, and even as simple as the sample labels.

So this is the test you are making life altering decisions on, and were probably told this test is 98.?? accurate. I found out from personal experience it is not , by the labs admission, 98.?? accurate.

"Silent" Celiac does not have radical symptoms. Other tests show something like anemia, and then further testing can reveal Celiac. Female hormones often make auto immune symptoms much worse.

Hmmm...interesting.

Thanks for the help and feedback guys. Everyone has been very helpful.

Seems, I may truely have Celiac Disease.

[Jestgar]

My experience with Prometheus Labs (in California - and does a lot of Celiac genetic tests )

My genetic test came back negative, my biological daughter's positive for both DQ2 and DQ8

after questioning the results ( because basically it is questionable not matching mother to daughter )\

Prometheus response...

genes mutate

could have fallen into the known 2% undected range

and my favorite.... EVERY test has at least a 30% error rate because of the human factor- i.e. sample handling, experience of the lab tech, who did the blood draw, and even as simple as the sample labels.

So this is the test you are making life altering decisions on, and were probably told this test is 98.?? accurate. I found out from personal experience it is not , by the labs admission, 98.?? accurate.

"Silent" Celiac does not have radical symptoms. Other tests show something like anemia, and then further testing can reveal Celiac. Female hormones often make auto immune symptoms much worse.

Maybe she's not really your daughter

I'm sorry 30% error rate!!!! WTH!!

No lab should have an error rate that high-ever.

[loraleena]

Did you feel better gluten free? If so regardless of whether you have celiac or not, you may have gluten intolerance. This can cause the same symptoms and reck your body as much as celiac without the typical villi damage or pos. celiac tests. If you feel better gluten free than stick with it.

[No Name]

Did you feel better gluten free? If so regardless of whether you have celiac or not, you may have gluten intolerance.

There's a difference?

Over the 5 years, I haven't really felt better. I used to have diarrhea about once a month and since being gluten-free, I still have the diarrhea about the same time.

I am not alergic to lactose.

[Takala]

There's a difference?

Yes, there is a difference. People who are "gluten intolerant" don't have the ability to digest the proteins of wheat, barley, and rye grains properly. Those proteins are called gluten.

If a person who is gluten intolerant keeps eating gluten, over time, they will develop an auto immune disease with many different symptoms. This disease may cause the deterioration of the lining of the intestines, which makes the ability to digest food difficult, and results in symptoms of malabsortion of nutrients and chronic weight loss and chronic bathroom visits and gut pain. That is what is thought of as classis "celiac disease."

If a gluten intolerant person stops eating gluten, in time the gut heals and the auto immune symptoms and diseases may slow down or even almost stop if the diet is followed strictly enough.

If the gluten intolerant person stops eating gluten, also, the antibodies to the gluten proteins in the blood may drop to almost "normal" levels.

This is where a lot of doctors really screw up. If a person hasn't eaten gluten for years and they draw blood for an antibody test, the test will usually come back "normal."

I had someone pull this stunt on me recently.

I was not amused, as I had told them it had been 5 years since I'd eaten any wheat products or wheat family byproducts.

I haven't bothered to ever do the genetic testing for the DQ genes because I've been tested before for something else that I obviously have and I don't have that blood marker, either, just like the other 5 to 10 percent of the patients with it. Big deal. It would not prove or disprove anything to me at all at this point, it would just run up some doctor's insurance reimbursement and further label me as having a chronic, pre existing condition. It would not also make me feel like I could eat whatever every body else is eating, since I was so horribly sick before I changed my diet there is no way I would ever go back to eating gluten based on any test performed by any doctor's office under any pretext.

If I went to a gastroenterologist now and they performed a biopsy, it should show my gut is pretty much healed up. I would have to spend weeks or months eating gluten again to get enough damage to show up, plus even people with celiac disease and/or gluten intolerance sometimes have biopsies that missed the damaged parts of the intestines (many feet of intestines and they just look at a few small parts).

From what other posters here have said about their experiences with genetic testing, I have a suspicion that I would indeed at least have the genes recognized in Europe as being associated with gluten intolerance but maybe not here in the states, since I get neurological symptoms plus the other stuff.

[No Name]

Takala,

thanks for all your insightful information.

I'm really confused now. I understand what you and everyone else is saying, but when I have my biopsy coloscopy and endoscopy done next week, and if they all come back negative, along with last week's blood test being negative, I'm not sure I should put so much stock in to that because I've been gluten-free for 5 years, and like you say, during the biopsy, they may miss the damaged areas (if there are any damaged areas).

I know once you have celiac disease, you always have it, but i'm not sure I ever had it, and apparently, niether does my docotr.

[megsylvan2]

Takala,

thanks for all your insightful information.

I'm really confused now. I understand what you and everyone else is saying, but when I have my biopsy coloscopy and endoscopy done next week, and if they all come back negative, along with last week's blood test being negative, I'm not sure I should put so much stock in to that because I've been gluten-free for 5 years, and like you say, during the biopsy, they may miss the damaged areas (if there are any damaged areas).

I know once you have celiac disease, you always have it, but i'm not sure I ever had it, and apparently, niether does my docotr.

Hi No Name Guest,

Welcome to a great forum!

Personally speaking, I wouldn't be on a gluten-free diet unless I was absolutely sure I needed to be. I have no diagnosis of anything, none of the tests points to anything positive, but I am absolutely sure I am gluten-intolerant, because of the way I feel when I eat it. In fact, I had to prove it to myself through multiple trials because I sure didn't want to be doing this unless I absolutely had to. In a bizarre way, that works in my favor because I really couldn't ignore my symptoms and eat gluten even if I really wanted to.

You don't have that advantage. In fact, from what you've described, you have no symptoms and even your original diagnosis is in question by the very doctor whom you originally went to see. By your own admission, you say that you may have misunderstood, and apparently your doctor is finding nothing conclusive in your chart. That sets off a bunch of red flags for me. I somehow doubt that your doctor would have forgotten to write down/file any of the positive test results.

Now, I know that there is such a thing as silent Celiac, but even for that, in the absence of symptoms, there has to be some kind of evidence that you have it in order to obtain that diagnosis. With no symptoms, some kind of test would have had to turn up positive to get a diagnosis of Celiac, and apparently you don't have any evidence of that.

Personally, if it were me, I would jump at the chance to find out whether or not I truly had either gluten intolerance or Celiac disease. It is harder to prove that somene *doesn't* have Celiac/Gluten Intolerance than it is to prove that they *do*. So it will be difficult for your doctor to prove that you don't have it. She would only be able to prove that you do. If she fails to do that, she still will not be able to prove that you *don't* have it.

It seems to me that the decision will then be yours. Are you willing to attempt going off a gluten-free diet to see if you have problems? You would be able to monitor your own symptoms and would notice any visible adverse effects like diarrhea or intestinal pain, bloating, etc. If you had no visible symptoms, but you really did have Celiac, (which your doctor somehow missed logging the proof of), you would risk getting sick and damaging your intestines. I assume that you and your doctor would want to work together to monitor your progress for this.

I know that I personally would certainly be willing to take that risk and challenge the original diagnosis and monitor the situation closely. In my opinion, I would be no worse off than when I first showed up for testing and was happily eating gluten. *Something* - either physical reaction, family history, or positive/suspicious test results, would have to prove to me that I needed to be gluten-free.

Best wishes on your decision,

Meg

[mftnchn]

Ｉ＇ｄ　ｗｏｎｄｅｒ　ｉｆ　ｙｏｕ　ｗｅｒｅ　ａｄｅｑｕａｔｅｌｙ　ｇｌｕｔｅｎ　ｆｒｅｅ，　ｓｉｎｃｅ　ｙｏｕ　ｗｅｒｅ　ｎｏｔ　ｈｉｇｈｌｙ　ｓｙｍｐｔｏｍａｔｉｃ．　　Ｉ＇ｍ　ｎｏｔ　ｓｕｇｇｅｓｔｉｎｇ　ｙｏｕ　ｗｅｒｅ　ｎｏｔ　ｃａｒｅｆｕｌ，　ｉｔ　ｉｓ　ｊｕｓｔ　ｅｘｔｒｅｍｅｌｙ　ｈａｒｄ　ｔｏ　ａｖｏｉｄ　ｇｌｕｔｅｎ　ａｎｄ　ｍａｙｂｅ　ｙｏｕ　ｄｏｎ＇ｔ　ｋｎｏｗ　ｗｈｅｎ　ｙｏｕ　ａｒｅ　ｅｘｐｏｓｅｄ．

Ｉｆ　ｙｏｕ　ｗｅｒｅ　ａｄｅｑｕａｔｅｌｙ　ｇｌｕｔｅｎ　ｆｒｅｅ，　ａ　ｃｈａｌｌｅｎｇｅ　ｍｉｇｈｔ　ｐｒｏｖｏｋｅ　ｓｔｒｏｎｇ　ｓｙｍｐｔｏｍｓ　ａｎｄ　ｔｈｅｎ　ｙｏｕ　ｗｏｕｌｄ　ｋｎｏｗ．

Ｉ　ｓｔｉｌｌ　ｗｏｕｌｄ　ａｓｋ　ｆｏｒ　ａ　ｃｏｐｙ　ｏｆ　ｔｈｅ　ｅｎｄｏｓｃｏｐｙ　ｒｅｓｕｌｔｓ．　　Ｔｈｅｒｅ　ａｒｅ　ｓｏｍｅ　ｖｉｓｉｂｌｅ　ｓｉｇｎｓ　ｔｈａｔ　ａｒｅ　ｉｎｄｉｃａｔｉｖｅ　ｏｆ　ｐｏｓｓｉｂｌｅ　ｃｅｌｉａｃ　ｂｕｔ　ａｒｅ　ｎｏｔ　ｄｉａｇｎｏｓｔｉｃ　ｉｎ　ａｎｄ　ｏｆ　ｔｈｅｍｓｅｌｖｅｓ　（ａｔ　ｌｅａｓｔ　ｂｙ　ｔｈｅ　ｇｏｌｄ　ｓｔａｎｄａｒｄ）．

Ｆｏｒ　ｅｘａｍｐｌｅ，　ａ　ｙｅａｒ　ｏｒ　ｓｏ　ｂｅｆｏｒｅ　ｇｏｉｎｇ　ＧＦ　Ｉ　ｈａｄ　ａｎ　ｅｎｄｏｓｃｏｐｙ　ｔｏ　ｔｒｙ　ｔｏ　ｆｉｎｄ　ｏｕｔ　ｗｈｙ　Ｉ　ｗａｓ　ｓｕｆｆｅｒｉｎｇ　ｆｒｏｍ　ｎａｕｓｅａ．　　Ｔｈｅｙ　ｗｅｒｅ　ｌｏｏｋｉｎｇ　ｆｏｒ　ｇａｓｔｒｉｔｉｓ　ａｎｄ　ｆｏｕｎｄ　ｉｔ，　ａｎｄ　ｓｉｎｃｅ　Ｉ　ｗａｓ　ｏｖｅｒｓｅａｓ　ｉｎ　Ａｓｉａ，　Ｉ　ｄｏｕｂｔ　ｔｈａｔ　ｔｈｅ　ｐｅｏｐｌｅ　ｄｏｉｎｇ　ｉｔ　ｈａｄ　ｅｖｅｒ　ｅｖｅｎ　ｓｅｅｎ　ｃｅｌｉａｃ　ａｎｄ　ｍｏｓｔ　ｗｏｕｌｄｎ＇ｔｈａｖｅ　ｈｅａｒｄ　ｏｆ　ｉｔ．　　Ｎｏ　ｂｉｏｐｓｙ．　　Ａｎｙｗａｙ　ｔｈｅｙ　ｇａｖｅ　ｍｅ　ａ　ｃｏｌｏｒｅｄ　ｐｒｉｎｔｏｕｔ　ｏｆ　ｔｈｅ　ｒｅｓｕｌｔｓ　ｔｈａｔ　ｈａｄ　ｐｉｃｔｕｒｅｓ　ｂｕｔ　ｋｅｐｔ　ｎｏ　ｏｔｈｅｒ　ｒｅｃｏｒｄｓ．　　Ｆｒｏｍ　ｔｈｉｓ　ｓｍａｌｌ　ｐｉｃｔｕｒｅ，　ｔｈｅ　ｖｉｅｗ　ｏｆ　ｔｈｅ　ｄｕｏｄｅｎｕｍ　（ｏｎｌｙ１）ｉｓ　ｔｏｔａｌｌｙ　ｓｍｏｏｔｈ，　ｎｏｔ　ａ　ｒｉｐｐｌｅ　ｉｎ　ｓｉｇｈｔ．　　Ｉｎ　ｍｙ　ｒｅｓｅａｒｃｈ，　Ｉ　ｈａｐｐｅｎｅｄ　ｏｎ　ｔｏ　ｖｉｅｗｓ　ｏｆ　ｔｈｅ　ｅｎｄｏｓｃｏｐｙ　ｌｏｏｋｉｎｇ　ａｔ　ｎｏｒｍａｌ　ｖｅｒｓｕｓ　ｃｅｌｉａｃ　ａｎｄ　ｏｔｈｅｒ　ｄｉｓｅａｓｅｓ．　　Ｉ　ｆｏｕｎｄ　ｏｕｔ　ｔｈａｔ　ＥＶＥＲＹ　ｖｉｅｗ　ｏｆ　ｔｈｅ　ｎｏｒｍａｌ　ｄｕｏｄｅｎｕｍ　ｓｈｏｕｌｄ　ｈａｖｅ　ａｔ　ｌｅａｓｔ　３　ｖｉｓｉｂｌｅ　ｆｏｌｄｓ，　ａｎｄ　ｔｈａｔ　ｒｅｄｕｃｅｄ　ｏｒ　ａｂｓｅｎｔ　ｆｏｌｄｓ　ｉｓ　ｈｉｇｈｌｙ　ｓｕｓｐｉｃｉｏｕｓ　ｉｆ　ｎｏｔ　ｄｉａｇｎｏｓｔｉｃ　ｏｆ　ｃｅｌｉａｃ．　　Ｉ　ｈａｖｅｎ＇ｔ　ｇｏｎｅ　ｅｌｓｅｗｈｅｒｅ　ｗｉｔｈ　ｍｙ　ｌｉｔｔｌｅ　ｐａｐｅｒ　ｔｏ　ｈａｖｅ　ｉｔ　ｒｅａｄ，　ｂｕｔ　ｉｔ　ｗａｓ　ｏｎｅ　ｍｏｒｅ　ｃｌｕｅ　ｏｎ　ｔｈｅ　ｒｏａｄ　ｆｏｒ　ｍｅ　ｔｏ　ｆｉｎａｌ　ｂｅｌｉｅｖｅ　ａ　ｃｌｉｎｉｃａｌ　ｄｉａｇｎｏｓｉｓ　ｏｆ　ｃｅｌｉａｃ．

Ｇｏｏｄ　ｌｕｃｋ，　ｙｏｕ　ａｒｅ　ｆａｃｉｎｇ　ａ　ｄｉｆｆｉｃｕｌｔ　ｄｅｃｉｓｉｏｎ　ｓｉｎｃｅ　ｇｏｉｎｇ　ｂａｃｋ　ｏｎ　ｇｌｕｔｅｎ　ｉｆ　ｙｏｕ　ａｒｅ　ｃｅｌｉａｃ　ｗｏｕｌｄ　ｂｅ　ｄａｎｇｅｒｏｕｓ　ｔｏ　ｙｏｕｒ　ｈｅａｌｔｈ．

[mftnchn]

Maybe she's not really your daughter

I'm sorry 30% error rate!!!! WTH!!

No lab should have an error rate that high-ever.

I agree, that error margin shouldn't be. But I know that is the case, maybe they just don't tell us that often. The Western Blot test for lyme is one example. 30% error is the best that is out there, and most labs are 50-6 0% error. But it is interesting that people get a negative test and the doctor without blinking says, you don't have lyme. That's why you have to go to a LLMD (lyme literate MD) because lyme is a clinical diagnosis.

[No Name]

Meg,

You hit the nail on the head!

I am willing to try eating a gluten diet and see the reaction.

In my "worst days" that led me to the doctor, all I ever had was diarrhea.

I never had intestinal pain, bloating, and some of the other symptons I have read on here.

I had a small rash behind me knee that lasted about 2 or 3 days and has never retured and someone told me that may have been a side effect of Celiac.

It was for 2 or 3 days in 2002. Never before or after. That's about the only other thing I can think of.

I appreciate everyone's help. I'll just have to grill my doctor for test reults, options, and answers.

Thanks again Meg.