About To Say Forget It All

[Frances03]

They finally called me back with my results. She said, and I quote because I wrote it all down, "everything looks fine, one of your levels was a little high but not outrageously high and the other 2 were negative" So I asked her for exactly what tests they were and she said "well your celiac panel that you requested!" Like I didn't know that, I meant WHAT tests. I have a copy of the results but I wanted her to explain them to me. So she said my ttg iga test came back 88 and 20 was high, and I said so that is just a "little high" and she said yes, typically someone with celiac would have levels in the 200'2 to 500's. Then she told me my gliadins which she couldn't pronounce and wasn't sure what it was, were normal, the AB IgA was 105 and my report says 31 or greater is a positive but SHE told me it was normal up to 378. This was done thru aruplab. SO I'm not sure if it's normal, or if it's high. I just know mine is 105 and my paper has it marked normal but says over 31 is high, and she told me high is 378. NOW, she also told me the dr could look for celiac when I get my colonoscopy on Wednesday!! I said, 'he can look for celiac with a colonoscopy??" because I am sure I read that you need an endoscopy for that but I wanted to see what she would say, and she said......"YES, you can often see signs of celiac in the lower intestine". IS THAT TRUE?????? Then she offered to have him do an endoscopy if "I want to pursue this". What do you all think I should do??? I have never even MET this guy, only seen HER the nurse practictioner. And I'm totally confused about my labs. I just want to say forget all this and just go eat a loaf of bread because no one in this entire state has any idea about celiac and diagnosing it or ANYTHING. she really has no idea what she's saying I think!!! I'm mad!

[psawyer]

The person you spoke with is very misinformed.

Your ttG is four times the positive level; your IgA is three times the positive level. I am not a doctor, but I would take both of those as definite positives.

Celiac can not be ruled in or out based on colonoscopy results. That requires an endoscopy. The prep needed for an endoscopy is a subset of the colonoscopy prep, and the two procedures are often done at the same time. A positive biopsy from the endoscopy would confirm celiac disease. But false negatives are possible. Many here consider positive blood work to be diagnostic by itself, others want the verification from the endoscopy.

But in either case, I would not continue to eat gluten after Wednesday if I was in your shoes.

[TrillumHunter]

First off, you're going to meet a lot uninformed people in your life that happen to have degrees. It happens.

Does your copy of the labwork have the reference ranges listed? If it does, and she is wrong, you might want to bypass her and see the physician with it in hand.

No, you need an endoscopy. The colonoscopy can reach far enough up to get samples from the right place. She is flat-out wrong. My NP said the same thing repeatedly until I took her by the arm and said, "I'm sure you mean an endoscopy." She thought for a minute and finally agreed.

Don't give up because of one bump in the road. If you are diagnosed, you'll be facing obstacles on a regular basis and you'll need to be strong and firm in your approach to family, waiters, doctors and total strangers even!

You can do it! Check back in.

[Roda]

They finally called me back with my results. She said, and I quote because I wrote it all down, "everything looks fine, one of your levels was a little high but not outrageously high and the other 2 were negative" So I asked her for exactly what tests they were and she said "well your celiac panel that you requested!" Like I didn't know that, I meant WHAT tests. I have a copy of the results but I wanted her to explain them to me. So she said my ttg iga test came back 88 and 20 was high, and I said so that is just a "little high" and she said yes, typically someone with celiac would have levels in the 200'2 to 500's. Then she told me my gliadins which she couldn't pronounce and wasn't sure what it was, were normal, the AB IgA was 105 and my report says 31 or greater is a positive but SHE told me it was normal up to 378. This was done thru aruplab. SO I'm not sure if it's normal, or if it's high. I just know mine is 105 and my paper has it marked normal but says over 31 is high, and she told me high is 378. NOW, she also told me the dr could look for celiac when I get my colonoscopy on Wednesday!! I said, 'he can look for celiac with a colonoscopy??" because I am sure I read that you need an endoscopy for that but I wanted to see what she would say, and she said......"YES, you can often see signs of celiac in the lower intestine". IS THAT TRUE?????? Then she offered to have him do an endoscopy if "I want to pursue this". What do you all think I should do??? I have never even MET this guy, only seen HER the nurse practictioner. And I'm totally confused about my labs. I just want to say forget all this and just go eat a loaf of bread because no one in this entire state has any idea about celiac and diagnosing it or ANYTHING. she really has no idea what she's saying I think!!! I'm mad!

I'd be mad too! Unfortunately the only test that was done for me was the IgA tTG. I did not know to ask for the whole panel(my endocrinologist ordered the test). They called me back to tell me the lab test was abnormal. My level was 78 with anything over 19 a positive. I was then referred to the gi doc. He didn't do any further blood work. He said that the positive tTG was enough to go ahead with the endoscopy and biopsy. It tured out positive! 6 months after being gluten free he ordered blood work again and my tTG went down to 10. My gliadin antibodies were high, but since I didn't have a baseline, I couldn't be sure if they were going down due to them being higher or if it was from accidental ingestion. I go back in Dec. so I will have it all looked at again. Your NP is so completely wrong. Don't give up if you want to pursue this and get a medical diagnosis. Alot of people here would go gluten free without the biopsy. For me I wanted it done to look for the celiac and anything else that could be going on. I also had a colonoscopy a few months later too. If you want to have this doctor do your colonoscopy I would definately schedule the endoscopy too. You need the latter to diagnose celiac. They need to take at least 6 random biopsy samples from the small intestine. If you are leary or uncomfortable with this dr. that you have never seen, either take all your results and find another one or insist on speaking with the doc. before the tests to feel "him/her" out a little bit.

[Frances03]

Thank you Peter for your very straightforward and easy to understand response, I appreciate that more than words can say in fact I'm about to burst in to tears! I am SO MAD right now. I called the lab, and was told the reference range for the gliadin peptide ab iga was31 or greater is positive, NOT over 378 like the nurse said, and that my result WAS positive, that I have 2 positives on this celiac panel. The nurse is so, so..................grrr, I am just SO MAD and for her to tell me I can get a COLONOSCOPY to check for celiac why is she even IN THIS BUSINESS. And this is all I have to choose from. Do I even trust these people to do a colonoscopy and an endoscopy?? But I have spent a year worrying that I have colon cancer and wednesday I intend to find out that I am FINE and not worry about that again. I'm sorry I am rampbling but I am SO UPSET right now.

[homemaker]

Thank you Peter for your very straightforward and easy to understand response, I appreciate that more than words can say in fact I'm about to burst in to tears! I am SO MAD right now. I called the lab, and was told the reference range for the gliadin peptide ab iga was31 or greater is positive, NOT over 378 like the nurse said, and that my result WAS positive, that I have 2 positives on this celiac panel. The nurse is so, so..................grrr, I am just SO MAD and for her to tell me I can get a COLONOSCOPY to check for celiac why is she even IN THIS BUSINESS. And this is all I have to choose from. Do I even trust these people to do a colonoscopy and an endoscopy?? But I have spent a year worrying that I have colon cancer and wednesday I intend to find out that I am FINE and not worry about that again. I'm sorry I am rampbling but I am SO UPSET right now.

I am so sorry you are going through all of this...I am waiting on my bloodwork and my MD was so clueless he didn't even know what test to give me! I don't even know what blood tests he did...I told him I wanted to be screened for Celiac Disease...who knows...

Hang in there...I hope I don't get the same run around

[happygirl]

The 378 she was referring to was probably for the total IgA test, which doesn't test for Celiac, but looks to identify those with IgA deficiency (which is more common in Celiac patients) and can affect the rest of the IgA based testing.

According to their website:

Open Original Shared Link

Reference range for total (or Serum) IgA for this lab: 68-378 mg/dL

Reference range for AGA IgA or AGA IgG for this lab:

19 Units or less: Negative

20-30 Units: Weak Positive

31 Units or greater: Positive

[CDFAMILY]

mcphena,

I am really concerned about your Gastroenterologist. He sounds very uninformed. Most Celiac Doctors do not look in the large intestines (colonoscopy) for Celiac unless there is a reason. 99% only do an EGD (upper endoscopy with 6-8 biopsies) when blood tests are positive like yours are. I think your doctor may be mixing up the ranges of TTG antibodies with ranges of a Total IgA test.

Is there any way you can contact your local Celiac Group to find a local Gastro that is not in the Dark Ages with Celiac Disease.

My husband and 2 children had positive TTG's far below 300 and the doctor diagnosed them with Celiac without a biopsy. If you need more information, there is an excellent site with tons of info on celiac and biopsies etc.

Open Original Shared Link

Also there is great info here Open Original Shared Link

Good information, be sure to click the left side for different areas. Dr. Green, the main Celiac Doctor is from this area.

Although some want a biopsy for insurance reasons, others prefer their insurance do not know since the cure is a gluten-free diet and you don't need drugs to fix it. It is up to you but......

Unless there is a good reason for a colonoscopy, I would ask for only an EGD and save yourself 24 hours of clean out and some money too. And some researchers agree a positive TTG is positive Celiac. Read below.

Celiac NO Biopsy Needed

Open Original Shared Link

1: Aliment Pharmacol Ther. 2008 Apr 1;27(7):572-7. Epub 2008 Jan 11.

Coeliac disease: a biopsy is not always necessary for diagnosis.

Hill PG, Holmes GK.

Department of Chemical Pathology, Derbyshire Royal Infirmary, Derby, UK.

BACKGROUND: In view of the high diagnostic accuracy of immunoglobulin-A-tissue transglutaminase antibodies for detecting coeliac disease, we have explored whether a small bowel biopsy is always required to establish the diagnosis. AIM: To define the transglutaminase antibody level giving a positive predictive value for coeliac disease of 100% and to subsequently assess the proportion of new diagnoses of coeliac disease having such a result. METHODS: The Celikey kit (Phadia GmbH, Frieburg, Germany) was used to measure transglutaminase antibody levels. RESULTS: All patients with transglutaminase antibody levels >30 U/mL, i.e. 10 x upper limit of normal in 2002/2003 had characteristic small bowel mucosal lesions. In a subsequent audit, 58% of 112 new diagnoses of coeliac disease in 2004/2005 had levels above this cut-off value. CONCLUSIONS: We have shown that a transglutaminase antibody level can be defined which gives a positive predictive value of 100% for coeliac disease. From published data, these observations can be extended to most second-generation transglutaminase antibody kits. Our data provide further evidence that diagnostic guidelines could be modified so that small bowel biopsy is no longer regarded as mandatory in patients with such high transglutaminase antibody levels. This will avoid an invasive procedure and lead to a more rapid diagnosis and earlier treatment for over half of the new patients with coeliac disease.

PMID: 18194500 [PubMed - indexed for MEDLINE]

I hope this helps.

[Frances03]

First off, you're going to meet a lot uninformed people in your life that happen to have degrees. It happens.

Does your copy of the labwork have the reference ranges listed? If it does, and she is wrong, you might want to bypass her and see the physician with it in hand.

No, you need an endoscopy. The colonoscopy can reach far enough up to get samples from the right place. She is flat-out wrong. My NP said the same thing repeatedly until I took her by the arm and said, "I'm sure you mean an endoscopy." She thought for a minute and finally agreed.

Don't give up because of one bump in the road. If you are diagnosed, you'll be facing obstacles on a regular basis and you'll need to be strong and firm in your approach to family, waiters, doctors and total strangers even!

You can do it! Check back in.

Thank you very much TrillumHunter, you are right. I am going to meet a lot of uninformed people so I shouldn't let it get me all out of whack every time. I will take my results with me on Wednesday and I will insist on talking to this doctor BEFORE he does this procedure. And you are right about me needing to be strong and firm. I'm going to work on that. Thank you.

[Frances03]

I'd be mad too! Unfortunately the only test that was done for me was the IgA tTG. I did not know to ask for the whole panel(my endocrinologist ordered the test). They called me back to tell me the lab test was abnormal. My level was 78 with anything over 19 a positive. I was then referred to the gi doc. He didn't do any further blood work. He said that the positive tTG was enough to go ahead with the endoscopy and biopsy. It tured out positive! 6 months after being gluten free he ordered blood work again and my tTG went down to 10. If you are leary or uncomfortable with this dr. that you have never seen, either take all your results and find another one or insist on speaking with the doc. before the tests to feel "him/her" out a little bit.

Thank you very much Roda. This is very encouraging because your test results are similar to mine, yours were 78 and mine were 88 on the ttg one, so maybe it will show up for me with an endoscopy too. I am totally going to do what you said and talk to him beforehand with my results in hand. Thank you very much

[Frances03]

mcphena,

I am really concerned about your Gastroenterologist. He sounds very uninformed. Most Celiac Doctors do not look in the large intestines (colonoscopy) for Celiac unless there is a reason. 99% only do an EGD (upper endoscopy with 6-8 biopsies) when blood tests are positive like yours are. I think your doctor may be mixing up the ranges of TTG antibodies with ranges of a Total IgA test.

Is there any way you can contact your local Celiac Group to find a local Gastro that is not in the Dark Ages with Celiac Disease.

My husband and 2 children had positive TTG's far below 300 and the doctor diagnosed them with Celiac without a biopsy. If you need more information, there is an excellent site with tons of info on celiac and biopsies etc.

Open Original Shared Link

Also there is great info here Open Original Shared Link

Good information, be sure to click the left side for different areas. Dr. Green, the main Celiac Doctor is from this area.

Although some want a biopsy for insurance reasons, others prefer their insurance do not know since the cure is a gluten-free diet and you don't need drugs to fix it. It is up to you but......

Unless there is a good reason for a colonoscopy, I would ask for only an EGD and save yourself 24 hours of clean out and some money too. And some researchers agree a positive TTG is positive Celiac. Read below.

Celiac NO Biopsy Needed

Open Original Shared Link

1: Aliment Pharmacol Ther. 2008 Apr 1;27(7):572-7. Epub 2008 Jan 11.

Coeliac disease: a biopsy is not always necessary for diagnosis.

Hill PG, Holmes GK.

Department of Chemical Pathology, Derbyshire Royal Infirmary, Derby, UK.

BACKGROUND: In view of the high diagnostic accuracy of immunoglobulin-A-tissue transglutaminase antibodies for detecting coeliac disease, we have explored whether a small bowel biopsy is always required to establish the diagnosis. AIM: To define the transglutaminase antibody level giving a positive predictive value for coeliac disease of 100% and to subsequently assess the proportion of new diagnoses of coeliac disease having such a result. METHODS: The Celikey kit (Phadia GmbH, Frieburg, Germany) was used to measure transglutaminase antibody levels. RESULTS: All patients with transglutaminase antibody levels >30 U/mL, i.e. 10 x upper limit of normal in 2002/2003 had characteristic small bowel mucosal lesions. In a subsequent audit, 58% of 112 new diagnoses of coeliac disease in 2004/2005 had levels above this cut-off value. CONCLUSIONS: We have shown that a transglutaminase antibody level can be defined which gives a positive predictive value of 100% for coeliac disease. From published data, these observations can be extended to most second-generation transglutaminase antibody kits. Our data provide further evidence that diagnostic guidelines could be modified so that small bowel biopsy is no longer regarded as mandatory in patients with such high transglutaminase antibody levels. This will avoid an invasive procedure and lead to a more rapid diagnosis and earlier treatment for over half of the new patients with coeliac disease.

PMID: 18194500 [PubMed - indexed for MEDLINE]

I hope this helps.

Thank you so much for typing all that out, I really appreciate it. I agree with you but she is not the gastro, she is the nurse practitioner and not the greatest apparently. i'm going to demand to talk with HIM before the procedures and make sure he knows what I want done. I'm pretty much already convinced celiac is what I have, with 2 positive blood tests and the MILE of other symptoms. And you are right, she did totally mix up the ranges, I confirmed that with the lab, and I am waiting on HER to call me back so I can tell her that too. I will check out your links in a sec. As for the colonoscopy I originally was having that because of constant constipation, and sometimes narrow stools like a shoestring (TMI I'm sorry!!) that had me paranoid about having cancer!! So for my own sanity I am going to go ahead with that, otherwise I will just worry needlessly for another year. It wasn't until I was researching that problem that I heard about celiac disease. So all this has happened in that last 2 weeks I'd say in regards to finding out my aunt "had some allergy to flour" to getting the blood test, to having it be positive and all that. Now as for the last part of your post, it says in that report they found all levels greater than 30 in other words 10 times higher than normal to be celiac without the need for endoscopy I believe is what I am reading? so, my levels being 88 would not be considered 10 times higher than normal would they? Again I want to thank you for taking the time to help me out. I am very grateful.

[ravenwoodglass]

I agree with the others your bloodwork is postive. I also agree with the poster who reccommended just getting the endo if you feel you need more confirmation and skipping the colonoscopy. The prep for that test is not pleasent and if the diet does away with your issues you have your answer. If after being on the diet for 3 to 6 months you are still having symptoms then maybe think about the lower scope. After you get done with any testing you choose to do then get on the diet strictly. You don't need to wait for the scope results as you are basically already diagnosed by the blood work.

[Frances03]

I agree with the others your bloodwork is postive. I also agree with the poster who reccommended just getting the endo if you feel you need more confirmation and skipping the colonoscopy. The prep for that test is not pleasent and if the diet does away with your issues you have your answer. If after being on the diet for 3 to 6 months you are still having symptoms then maybe think about the lower scope. After you get done with any testing you choose to do then get on the diet strictly. You don't need to wait for the scope results as you are basically already diagnosed by the blood work.

Raven, thank you, I think I will go ahead and start the gluten free diet right away after Wednesday. Maybe my seizures will stop and all my bowel problems, my itching, joint pain, and maybe I can even get pregnant and not lose the baby! I am also going to have my 3 sons tested. My middle son (9yo) has constipation problems along with leaking stool problems, and he is only in the 25% for height, whereas my other 2 sons are both much taller than average, plus he suffers from anxiety! I had a doctor give him a prescription for pepcid at 9 years old which I think is totally off, I think it would be better to find out WHY he needs that than to give him drugs. Maybe he is celiac too if I am!

[pewpewlasers]

I am so surprised how uninformed some doctors are.

I saw a new pcp and she ordered a celiac blood panel and I haven't been eating gluten for over a year. I told her they wouldn't find anything because I need to be eating gluten.....yet she still ordered the test. I was pretty confused about that and I had to tell her about how the blood test worked.

[CDFAMILY]

Ok mcphena

I have never told anyone this but I too had the same strange and scary looking stools like flat ribbons. I do think strange things like this is very common with Celiac. Also the constipation is a main symptom so I would not worry to much about that being cancer.

But if you feel more comfortable getting both then I would go ahead. I did both at the same time because of my age...but I will tell you unless I am having serious symptoms....I will never do the colonoscopy again only because of the prep...the actual procedure is simple.

Best of Luck to you tomorrow and Wednesday

[Wolicki]

Invest some time now trying to find a GOOD doctor that understands Celiac. I've got 4 doctors, and none of them have my confidence. I am sorry you are having the same problem most of us have had. The AMA or someone needs to educate these people!!!

[nora-n]

Celiac is highly genetic and the chances for your son having celiac to is high.

The test where the number was something with 378 is just the total IgA, and the nurse is totally wrong if she says it needs to be above 378 to be positive. It is just so stupid. even a number greater than 378 would not mean it is positive. This test is not a celiac test, just a test for total IgA to see if the other tests are valid.

Your ttg sounds quite positive.

[Frances03]

Thanks again everyone. Today I went DOWN TO THE LAB, with my test results in hand, and showed them what was going on and that not one but TWO different doctors have called me and told me my gliadin peptide ab was normal, and the lab looked it up, and CALLED the head honcho and confirmed that it is in fact NOT normal but HIGH and the reason the number is under normal is because aruplab did not include a number in the reference column on the results, they put the reference range UNDER the results, so since the reference column is EMPTY, the computer doesn't know what to do with the results so they are going under normal. and TWO doctors cannot figure this out. It makes me mad because if someone was not so persistant, they woudl believe when nurses call them up and say "your lab results are all normal!" GRRRRRR

[nora-n]

There was a similar story here a couple of years ago or so, where someone figured out the resutls actually were positive, but he report said normal, and the hospital had to call all the patients who got the initial report the results were normal and had to tell them the results were positive.....wonder if it i s the same lab?

Anyone remember the story?

Bottom line: get the results and read them youself

[brigala]

I am so surprised how uninformed some doctors are.

I saw a new pcp and she ordered a celiac blood panel and I haven't been eating gluten for over a year. I told her they wouldn't find anything because I need to be eating gluten.....yet she still ordered the test. I was pretty confused about that and I had to tell her about how the blood test worked.

My PCP did, too, but at least she gave me an explanation. She pointed out that Celiac can cause a host of other problems, and she felt it was important to give me a blood test even though I'd been gluten-free for 2 years. Even though my test came back negative, "Gluten" is listed as an "allergen" in my Kaiser medical chart based solely on my reported improvement of symptoms since embarking on the gluten-free diet myself. She was just checking to make sure the gluten-free diet was working for me (i.e. -- that I had successfully eliminated enough gluten from my diet that I am not producing antibodies to it). My sister had a positive blood test after being "gluten-free" for a year (I don't think she's very good at following the diet, but she's sure she is and I can't convince her otherwise).

I took my negative blood test to mean that I'm doing well on the diet. It gives me peace of mind that I haven't just relieved symptoms, but chances are I've "cured" it. I sometimes wish I had a baseline pre-gluten-free test to compare to, but I don't wish it enough to make myself sick by doing a gluten challenge.