Frustrated With No Diagnosis

[orangez28cam]

I had the celiac blood test panel back in October (positive on Deamidated IGA--55 with over 30 considered high, and positive on TTG IGG--6 with 6-9 being moderate positive), all other blood tests came back negative. Saw a GI doc who wanted to do an endoscopy. Did that a week ago, and the 6 biopsies he took were all negative for villi damage. I got a letter in the mail telling me that there was no sign of celiac sprue, but that I could try the gluten free diet if I wanted to because some of his other patients with my same symptoms (my symptoms are everything from diarrhea, Raynaud's disease, hair loss, fatigue, hypoglycemia, bloating, thickened gallbladder wall, and on and on) have seen some improvement. So, ok, I will go gluten free, but am I gluten intolerant, do I have celiac, or does he just think I'm nuts and is telling me to go gluten free because he thinks that's what I want to hear? Can you have a positive Deamidated IGA test and not have celiac? I am so frustrated. I know that damage can be patchy, and that I could have celiac, but I just wish he would have diagnosed me with something so I don't feel like some kind of hypochondriac with yet another negative test telling me there is nothing wrong with me.

[mushroom]

The Deamidated Gliadin Protein is the most specific blood test for celiac disease there is, and it was positive. You are celiac. The endoscopy came back negative, but there is a 20% false negative rate on this procedure - it depends on the skill of the doctor in recognizing which areas to biopsy, and to know what he is seeing, as well as a great deal of luck. Consider yourself diagnosed. There are people on this board who would die for a piece of paper with a positive celiac blood test.

It used to be that doctors would tell you to go away and eat gluten and be happy if your tests came back negative. At least now they are starting to tell you to try the diet anyway and see if it makes you feel better. But to me the negative biopsy means nothing when you have a high positive on the most specific celiac blood test there is, and you have all the symptoms (well, not ALL, but so many). I would call myself celiac and be strictly gluten free for the rest of my life if I were you. I am sure you will improve right away. And you will need the help of your GP in ordering tests for vitamin and mineral levels which will probably be subpar because of the celiac malabsorption.

[orangez28cam]

The Deamidated Gliadin Protein is the most specific blood test for celiac disease there is, and it was positive. You are celiac. The endoscopy came back negative, but there is a 20% false negative rate on this procedure - it depends on the skill of the doctor in recognizing which areas to biopsy, and to know what he is seeing, as well as a great deal of luck. Consider yourself diagnosed. There are people on this board who would die for a piece of paper with a positive celiac blood test.

It used to be that doctors would tell you to go away and eat gluten and be happy if your tests came back negative. At least now they are starting to tell you to try the diet anyway and see if it makes you feel better. But to me the negative biopsy means nothing when you have a high positive on the most specific celiac blood test there is, and you have all the symptoms (well, not ALL, but so many). I would call myself celiac and be strictly gluten free for the rest of my life if I were you. I am sure you will improve right away. And you will need the help of your GP in ordering tests for vitamin and mineral levels which will probably be subpar because of the celiac malabsorption.

Thank you for the reply. It's just really hard when so little is known about Celiac, and it seems like unless you have a diagnosis, nobody really takes it seriously. Another concern I have is that I have two small children. My GI doc knows this, but isn't concerned with having them tested--because in his book, I do not have Celiac because the biopsies were negative, so my kids can't have it. Is this something I should pursue, or wait to see if they develop symptoms?

[Jestgar]

Would you consider making the whole family gluten-free just to see how everyone does?

[ravenwoodglass]

Consider yourself diagnosed. There are people on this board who would die for a piece of paper with a positive celiac blood test.

It used to be that doctors would tell you to go away and eat gluten and be happy if your tests came back negative.

And some folks who almost died because of those false negative blood tests. I had the type of doctors Mushroom refers to. At least your doctors told you to try the diet. Mine didn't do that or even tell me what it was they were testing me for other than calling it 'sprue'. The word gluten was never mentioned until after I was finally diagnosed.

I have a feeling you are going to feel like a whole different person in a few months. Do be strict with the diet and I agree you should consider yourself diagnosed.

[ravenwoodglass]

Thank you for the reply. It's just really hard when so little is known about Celiac, and it seems like unless you have a diagnosis, nobody really takes it seriously. Another concern I have is that I have two small children. My GI doc knows this, but isn't concerned with having them tested--because in his book, I do not have Celiac because the biopsies were negative, so my kids can't have it. Is this something I should pursue, or wait to see if they develop symptoms?

Your GP knows how sick you have been. You have positive blood tests and will most likely see a great remission in your health issues once you have been gluten free for a bit. There is a pretty good chance your GP might give you a diagnosis.

You don't need the GI doctor to order the blood screening for the kids. If the kids are not having any health or mood issues then you can talk to the Ped at their next appointment.

[cahill]

Your GP knows how sick you have been. You have positive blood tests and will most likely see a great remission in your health issues once you have been gluten free for a bit. There is a pretty good chance your GP might give you a diagnosis.

You don't need the GI doctor to order the blood screening for the kids. If the kids are not having any health or mood issues then you can talk to the Ped at their next appointment.

how accurate is the blood test for young children?? ,,,,my granddaughters are 4 and 6

[Mattie-Jack]

I'm a little confused and new to this. I understood through my research that the intestinal biopsy is the "gold standard" and that no official Celiac diagnosis could be without a positive one.

My 7 year old daughter has been having soiling accidents for over 2 years. She's been diagnosed with chronic constipation and Miralax alleviated the problem but only temporarily. She continues to have issues. Her first two blood tests were positive for Celiac but the biopsy was negative. We went to a second pediatric GI for a 2nd opinion. He concurred that the biopsy was negative, therefore ruling out Celiac.

Most of my information about Celiac are from Dr. Green's book but he indicates that the biopsy needs to be positive and that changing to a gluten-free diet is too radical without an accurate diagnosis. Any thoughts on this?

[cassP]

I'm a little confused and new to this. I understood through my research that the intestinal biopsy is the "gold standard" and that no official Celiac diagnosis could be without a positive one.

My 7 year old daughter has been having soiling accidents for over 2 years. She's been diagnosed with chronic constipation and Miralax alleviated the problem but only temporarily. She continues to have issues. Her first two blood tests were positive for Celiac but the biopsy was negative. We went to a second pediatric GI for a 2nd opinion. He concurred that the biopsy was negative, therefore ruling out Celiac.

Most of my information about Celiac are from Dr. Green's book but he indicates that the biopsy needs to be positive and that changing to a gluten-free diet is too radical without an accurate diagnosis. Any thoughts on this?

the biopsy as the "gold standard" is the "in the box" thinking of our medical system today. if biopsies run at least a 20% negative, then they cant be the end all be all answer. most people on here would say the "gold standard" should be how you feel on the diet. (but then again, most celiacs dont even have gut symptoms, so that wouldnt be an accurate statement either).

and i really find it annoying when experts or media say that people shouldnt "experiment" with a gluten free diet- cause it could be really dangerous... ya, its dangerous- if you dont know how to eat right, or if you only eat gluten-free treats... but removing wheat i think could benefit MOST people. there are so many healthier complex carbs out there like Quinoa and Buckwheat... sorry, it just really annoys me when they say that

[mushroom]

Research is only beginning to scratch the surface of gluten sensitivity. It used to be assumed that the only people who were sensitive to gluten were celiacs, that celiac disease was the only disease of gluten sensitivity. We now know that celiac disease is just the tip of the iceberg, the gluten sensitivity that can be tested for by the celiac blood panel and the small intestine biopsy.

Besides the Celiac Association, there is another organization known as the GIG (Gluten Intolerance Group) composed of individuals who have tested negative for celiac disease but who do not tolerate gluten. This encompasses a myriad of individuals with varying symptoms, all of them related to an intolerance to gluten.

Before the celiac blood panel was developed, the only way to test for celiac disease, which is specific damage to the lining of the small intestine, was the intestinal biopsy. When the blood test was developed it was used as a screeening tool, and then the diagnosis was confirmed by biopsy, the "gold standard." But thinking is evolving, testing is evolving (the Deamidated Gliadin Peptide is a new test) and patients are no longer accepting of the fact that gluten makes them sick but they are told that they are perfectly well. Well, if it isn't celiac disease, doc, what is it??

It is commonly accepted in the medical community that there is a 20% error rate (on the negative side; there does not seem to be such a thing as a false positive) (and no I don't have a a reference for that readily at hand) in both the blood testing and the biopsy for celiac disease. And then there are all those other people..... how to explain them??? They do not have celiac disease, but refraining from eating gluten makes them better; they eat gluten and they get very ill. They haven't been able to answer these questions yet, but they are working on it. But in the meantime we have all these doctors practicing, with very fixed ideas about gluten intolerance, and they don't suffer at all when they tell their patients to go away and eat gluten because they are perfectly healthy because their tests were negative.

See also the following article that just came online here: https://www.celiac.com/articles/22389/1/Study-Supports-Gluten-free-Diet-for-Potential-Celiac-Disease-Patients/Page1.html

[ravenwoodglass]

how accurate is the blood test for young children?? ,,,,my granddaughters are 4 and 6

When the blood test is positive it is very accurate. The problem is with false negatives. If the blood test is positive it is very likely that celiac is present.

As for the biopsy being the 'gold standard' there are many reasons for there being a false negative on biopsy. Those range from patchy damage that gets missed, we have 22 ft of small intestine and damage can be missed, the doctor not taking enough biopsies, a doctor not knowing the stages of the disease that come before total villi atrophy, like increased esinophils etc.

If someone is lucky enough to have a clearly positive blood test then they need to do the diet strictly after testing no matter what the biopsy says.

[Mattie-Jack]

Wow. Thanks for the information. I have been increasingly frustrated with my daughter's soiling as the physicians have "ruled out" Celiac and blamed attention as the cause. We had her tested for ADD and providers disagreed about a diagnosis but her GI was so proud to say he had found the cause of her problems and closed the book. I've been unwilling to accept that she is just failing to pay attention to her body but have been unable to find someone in the medical arena willing to pursue some diagnosis in the Dallas/Fort Worth area.

Should I ask for a more advanced blood test, the one you mentioned (Deamidated Gliadin Peptide?)

I have received a copy of her labs but don't know exactly how to read them. It looks like this is out of range:

I'll try to clarify. I need a medical degree!

Tissue Transglutaminase Antibody, IGA

<5 Negative and >8 Positive

She shows 16L for Immunoglobulin A (is that IGA?)

Endomysial Antibody Screen (IGA) POSITIVE

Gliadin Antobody (IGG

<11 Negative and >17 Positive

She shows 32H

[cassP]

Wow. Thanks for the information. I have been increasingly frustrated with my daughter's soiling as the physicians have "ruled out" Celiac and blamed attention as the cause. We had her tested for ADD and providers disagreed about a diagnosis but her GI was so proud to say he had found the cause of her problems and closed the book. I've been unwilling to accept that she is just failing to pay attention to her body but have been unable to find someone in the medical arena willing to pursue some diagnosis in the Dallas/Fort Worth area.

Should I ask for a more advanced blood test, the one you mentioned (Deamidated Gliadin Peptide?)

I have received a copy of her labs but don't know exactly how to read them. It looks like this is out of range:

Immunoglobulin A is 16L

IGA screen reads POSITIVE

IGG screen reads 32H

those lab results look really vague and confusing to me too...??? what is the "IGA" reading positive-> is it Tissue Transglutamase IGA,or Antigliadin IGA??

and the "Immunoglobulin A at 16L"- is that maybe a "Total IGA Serum" ???? im confused

and back to her doctors blaming it on "Attention"- that infuriates me. she's not faking her soiling drama- poor girl- i hope you get it all figured out soon!

from what ive heard the newer Deamidated Antigliadin is a more sensitive test- but i imagine like the other tests, she'll need to be eating enough gluten prior to testing.

[Jestgar]

I have received a copy of her labs but don't know exactly how to read them. It looks like this is out of range:

Immunoglobulin A is 16L

IGA screen reads POSITIVE

IGG screen reads 32H

So her total IgA is low, meaning that any IgA (L) reading would be potentially inaccurate, and yet her IgA screen (presumably gliadin) is positive and her IgG screen is positive.

Tell me again why you need an additional positive test? How many pieces of paper that say POSITIVE do you need?

[Mattie-Jack]

So her total IgA is low, meaning that any IgA (L) reading would be potentially inaccurate, and yet her IgA screen (presumably gliadin) is positive and her IgG screen is positive.

Tell me again why you need an additional positive test? How many pieces of paper that say POSITIVE do you need?

Thank you for clarifying some of the test results. I visited a local pediatric GI and traveled for a 2nd opinion after asking around for someone who may "think outside of the box." I insisted on additional food allergy testing which was all negative. Stool testing was all negative. ADD testing was inconclusive and yet problems continue. I think that I should also ask for a lactose intolerance test. Everything in the medical community points to the biopsy as final piece of the puzzle, which was negative in her case.

It is difficult to make a decision with little support from the medical community. This is a wonderful forum and I think that we may start a gluten-free diet this new year.

If we begin a gluten-free diet and see improvements, do I just consider her a self-diagnosed Celiac? Does it really matter that a physician hasn't supported the diagnosis? Is there a minimum time frame that I should go gluten-free to determine if it helps her symptoms?

[mushroom]

I would say that she is diagnosed celiac by blood test, and carry the piece of paper around with me to prove it, especially to the schools, as to why she needs to eat gluten free.

You should expect to see some improvement almost immediately, but you really need to give the diet a good 3-6 month trial before making any final conclusions about it. I would be very surprised if you are not amazed at the results.

[Jestgar]

I would say that she is diagnosed celiac by blood test, and carry the piece of paper around with me to prove it, especially to the schools, as to why she needs to eat gluten free.

yep. Not your fault her doc doesn't understand test results.