Positive Blood Tests/neg Biopsies - What Now?

[SuzyQ2]

Help!

Well my dr has called me today to advise that the biopsies have come back normal (5 taken). He said scientifically I don't have celiac disease but all my symptoms point to it including a high reading for Ttg transglutaminase. He has sent me for another set of blood tests to test my levels again plus thyroid, diabetes and a full blood count. I've always been anaemic, have low calcium levels.

I was positive it was celiac disease and now I'm so disappointed I've not been diagnosed. What to do now? Do I continue to eat gluten and try again in a few months but the thought of the pain of bloating etc is so off putting and the cost of all these tests??

Has anyone else been in a similar situation and been retested with a positive result?

[Gemini]

Help!

Well my dr has called me today to advise that the biopsies have come back normal (5 taken). He said scientifically I don't have celiac disease but all my symptoms point to it including a high reading for Ttg transglutaminase. He has sent me for another set of blood tests to test my levels again plus thyroid, diabetes and a full blood count. I've always been anaemic, have low calcium levels.

I was positive it was celiac disease and now I'm so disappointed I've not been diagnosed. What to do now? Do I continue to eat gluten and try again in a few months but the thought of the pain of bloating etc is so off putting and the cost of all these tests??

Has anyone else been in a similar situation and been retested with a positive result?

Positive blood work IS a diagnosis but the AMA hasn't caught on yet....really! These days, if they don't see it on a picture, they will doubt the diagnosis.

You probably haven't triggered long enough to cause extensive enough damage to be found with just 5 samples. That was not enough samples, either....a good doc would take 10-20 samples, from all over your small intestine.

Did he do a full Celiac panel on you? Just doing a tTg is not enough to get a full picture, either. Those other tests for thyroid and diabetes are good to do as they alone can cause elevated tTg but having positive blood work and a negative biopsy is very common with celiac disease. I would insist on a full panel, along with those other tests and you will get a clearer picture of what's going on. Keep eating gluten, if you can stand it, until testing is complete or it will affect results.

[SuzyQ2]

Positive blood work IS a diagnosis but the AMA hasn't caught on yet....really! These days, if they don't see it on a picture, they will doubt the diagnosis.

You probably haven't triggered long enough to cause extensive enough damage to be found with just 5 samples. That was not enough samples, either....a good doc would take 10-20 samples, from all over your small intestine.

Did he do a full Celiac panel on you? Just doing a tTg is not enough to get a full picture, either. Those other tests for thyroid and diabetes are good to do as they alone can cause elevated tTg but having positive blood work and a negative biopsy is very common with celiac disease. I would insist on a full panel, along with those other tests and you will get a clearer picture of what's going on. Keep eating gluten, if you can stand it, until testing is complete or it will affect results.

Hi Gemini

I went back and got extra blood work done on Thursday including the genetic tests so hopefully these will be back next Tuesday. Fingers crossed they provide some answers!

My Gastro Dr also mentioned that the problem maybe lower down so I might need a colonoscopy. Will a colonscopy also show celiac disease? I thought only the endoscopy could do this?

[glutenmommy]

I don't mean to sound harsh, but my feeling is who really cares if it's an "official" diagnosis? Your blood work has clearly indicated that you cannot tolerate gluten. Clearly it makes you feel sick when you ingest it, so the simple solution is to give it up. While it is important to know whether or not you have celiac disease (and in my opinion you do based on your blood work) you can spend years chasing down an official diagnosis which is very subjective anyway -- one doctor's "yes" is another doctor's "no." Why keep torturing yourself with eating gluten just so another lab tech can possibly misread your slide? The most foolproof way to tell is to go on a strict elimination diet. When the symptoms return after ingesting gluten (and they will), then BINGO! There's your answer! Whether or not it's "official" celiac or just gluten intolerance doesn't matter -- either way you can't tolerate it.

I really don't mean to sound flip. Hope that helps.

[Lisa16]

Nothing harsh about it, gluten mommy-- except, perhaps, to the medical system :-) And that's okay in my book. They deserve it.

Suzy-- I was in your exact same position in 2000. I had classic symptoms and high positives on the blood work (full panel IgG, IgA, tTg, etc.) and a negative biopsy (villi irritated, but not flattened.) They told me I did not have it and they sent me out to keep eating gluten.

I kept getting sicker and sicker. I lost my gallblader. I had to have a hysterectomy. I started getting headaches, nerve problems, muscle spasms, sores in my mouth, bp spikes.... the list goes on and on.

Finally I got DH (which was misdiagnosed as shingles no less than three times). That was the definitive diagnosis.

Here is the truth. If you have positive bloodwork, you have celiac disease with nearly 99% accuracy and specificity. There are no false positives with this bloodwork.

If I could spare you the years and the suffering that I went through before getting the official dx, I would. No matter what happens to you after this point, consider yourself a celiac. Get the diagnosis if you must (and maybe get yourself a more enlightened doc,) but at this point you have all the information you really need.

Welcome to the club.

[SuzyQ2]

Nothing harsh about it, gluten mommy-- except, perhaps, to the medical system :-) And that's okay in my book. They deserve it.

Suzy-- I was in your exact same position in 2000. I had classic symptoms and high positives on the blood work (full panel IgG, IgA, tTg, etc.) and a negative biopsy (villi irritated, but not flattened.) They told me I did not have it and they sent me out to keep eating gluten.

I kept getting sicker and sicker. I lost my gallblader. I had to have a hysterectomy. I started getting headaches, nerve problems, muscle spasms, sores in my mouth, bp spikes.... the list goes on and on.

Finally I got DH (which was misdiagnosed as shingles no less than three times). That was the definitive diagnosis.

Here is the truth. If you have positive bloodwork, you have celiac disease with nearly 99% accuracy and specificity. There are no false positives with this bloodwork.

If I could spare you the years and the suffering that I went through before getting the official dx, I would. No matter what happens to you after this point, consider yourself a celiac. Get the diagnosis if you must (and maybe get yourself a more enlightened doc,) but at this point you have all the information you really need.

Welcome to the club.

Hi Lisa,

Thank you so much for sharing your story with me. I honestly believe I have celiac disease but it's upsetting that I can't a medical diagnosis and the system has failed me. I've decided that I will go gluten free and see how I feel after this which I'm sure I will feel better. All the symptoms you have described above I continue to have.

I agree with you I need another doctor. The expense is just the off putting part.

Take care

Suzy

[Lisa16]

And getting another doctor is also taking a chance-- you don't know if the person is any good or not. It is very hard.

I was misdiagnosed for over 23 years (before 2000) and I have been through every conceivable test, taken tons of medicines and hit the wall with the medical system more times than I care to count. Doctors definitely have their limitations.

celiac disease is a very frustrating disease.

But I think you will find that having a diagnosis doesn't really make that big of a differnce in the long run-- the outcome is exactly the same anyway. You are now gluten-free for life.

Hang in there and good luck.

[Mom2Boys]

Wow, reading all of this makes me appreciate the new doctor I've found! He's trying to help me figure out why I'm so tired a lot of the time, even after being on medication for 2 years to help my hypothyroidism. When he reviewed my test results with me, he told me he's pretty sure it's celiacs and I needed to go gluten-free. He said that a lot of docs want a biopsy, just to make sure, but he doesn't think it's necessary (he would do it if I wanted one). I'm still waiting for the results of the genetic tests he ran, but he based his diagnosis on an elevated gliadin AB IGG. I don't see too much mention of the gliadin tests on here, so I'm kind of curious why he might prefer to use that. I guess I'm still in denial and trying to sneak in that last bit of pizza, but would a high gliadin AB IGG mean for sure that I need to eliminate gluten? Thanks for letting me jump in here!

[SuzyQ2]

Wow, reading all of this makes me appreciate the new doctor I've found! He's trying to help me figure out why I'm so tired a lot of the time, even after being on medication for 2 years to help my hypothyroidism. When he reviewed my test results with me, he told me he's pretty sure it's celiacs and I needed to go gluten-free. He said that a lot of docs want a biopsy, just to make sure, but he doesn't think it's necessary (he would do it if I wanted one). I'm still waiting for the results of the genetic tests he ran, but he based his diagnosis on an elevated gliadin AB IGG. I don't see too much mention of the gliadin tests on here, so I'm kind of curious why he might prefer to use that. I guess I'm still in denial and trying to sneak in that last bit of pizza, but would a high gliadin AB IGG mean for sure that I need to eliminate gluten? Thanks for letting me jump in here!

Mom2Boys - you are very lucky indeed to have found the dr that you have. I have just spoken with my mother as I know she has had problems with her thyroid over the last 5 years and she advised me she has had her thyroid gland removed as she had goiter. This has also been related to celiac disease. I told my mum that she should probably be tested but she is a bit of a health nut and doesn't eat gluten these days anyway so her test would probably be negative.

Thinking back now I've probably not eaten large amounts of gluten until about 5 weeks ago and this is when all my problems started to happen ie. bloating, fatigue, depression, basically a lack of motivation to do anything. Maybe the fact that I hadn't eaten enough gluten has given the negative biopsy results?

Anyway thank you all so much for taking the time out to reply to queries.

[captaincrab55]

but would a high gliadin AB IGG mean for sure that I need to eliminate gluten? Thanks for letting me jump in here!

Being new here, I'm confused about the gliadin AB IGG. Is it different from AB IgG? I can only find AB IgG on my LabCorp report.

[Lisa16]

Do a search on each of these tests-- either on the board or on google. You will find lots of information about what each one measures and what the elevated numbers mean. Even wikipedia will have this.

[captaincrab55]

Do a search on each of these tests-- either on the board or on google. You will find lots of information about what each one measures and what the elevated numbers mean. Even wikipedia will have this.

OK, I did a wikipedia search on; gliadin AB IGG

Open Original Shared Link

Search results: Did you mean: gliadin ABA IGG

I've noticed that some members type their labs all lower case while others use all upper case letters.

I guess the question I need answered is, does upper and lower case letters mean the same test?

[Mom2Boys]

OK, I did a wikipedia search on; gliadin AB IGG

Open Original Shared Link

Search results: Did you mean: gliadin ABA IGG

I've noticed that some members type their labs all lower case while others use all upper case letters.

I guess the question I need answered is, does upper and lower case letters mean the same test?

Hey Captain...Hope I'm not adding to your confusion as I'm just a confused newbie myself and certainly may not be typing things as they appear on my labs. I've been reading a lot and it sure is hard to sort out everything, even seeing it all right in front of me. I read on one website that the gliadin antibody tests aren't used much these days, but I'm sure my doctor has his reasons for using them; I have a message in with his office, so I hope to find out soon. Good luck with everything!

[Mom2Boys]

Mom2Boys - you are very lucky indeed to have found the dr that you have. I have just spoken with my mother as I know she has had problems with her thyroid over the last 5 years and she advised me she has had her thyroid gland removed as she had goiter. This has also been related to celiac disease. I told my mum that she should probably be tested but she is a bit of a health nut and doesn't eat gluten these days anyway so her test would probably be negative.

Thinking back now I've probably not eaten large amounts of gluten until about 5 weeks ago and this is when all my problems started to happen ie. bloating, fatigue, depression, basically a lack of motivation to do anything. Maybe the fact that I hadn't eaten enough gluten has given the negative biopsy results?

Anyway thank you all so much for taking the time out to reply to queries.

SuzyQ2 - It's amazing to think that gluten can cause all these problems. I always thought that celiacs had lots of GI issues that alerted them to the condition, but was never aware it could be related to autoimmune disorders. My doc said that's probably why my thyroid is out of whack. So the gluten can make you noticeably fatigued? Inconsistent energy levels, fatigue, brain fog and vague body/muscle aches have been my main complaints over the last few years; can all that be caused by gluten?? I just thought I was having trouble getting on the right dose of thyroid meds.

Yes, I'm thankful to have found a new doctor that actually listens to me and tries to help me get better. My family doctor didn't even want to treat my thyroid because I wasn't "that bad" (in his opinion) and he consistently blows off any issues I have. He also got a bit miffed when I told him I was going to consult with this other doctor and shared the labs that the new doc had ordered. The only bad thing is my new doctor doesn't work in a primary care capacity; he just works as an adjunct to my family doc. Guess I'll be shopping for a new family doc that is more accepting of me getting more than just his opinions.

Good luck to you!

[captaincrab55]

Hey Captain...Hope I'm not adding to your confusion as I'm just a confused newbie myself and certainly may not be typing things as they appear on my labs. I've been reading a lot and it sure is hard to sort out everything, even seeing it all right in front of me. I read on one website that the gliadin antibody tests aren't used much these days, but I'm sure my doctor has his reasons for using them; I have a message in with his office, so I hope to find out soon. Good luck with everything!

My doc included Gliadin in the labs.

Deamidated Gliadin Abs, Iga 36.8 High U/mL 0.0 - 10.0

Deamidated Gliadin Abs, IgG 3.1 U/mL 0.0 - 10.0

I'll Post the complete Lab Report in the near future..

[Mom2Boys]

My doc included Gliadin in the labs.

Deamidated Gliadin Abs, Iga 36.8 High U/mL 0.0 - 10.0

Deamidated Gliadin Abs, IgG 3.1 U/mL 0.0 - 10.0

I'll Post the complete Lab Report in the near future..

Hello again. I just looked at my lab sheet from Quest and all of the test names are entirely in caps (a formatting thing with Quest). Mine doesn't say "deamidated", but just Gliadin AB IGG and Gliadin AB IGA. Wonder if those are the same thing? My IGA was normal, but the IGG was high. Were you gluten-free when your tests were done?

Saw you're in Baltimore. I'm in south-central PA, but am using a doc I found in Owings Mills, MD. So far, very happy with him.

[captaincrab55]

Hello again. I just looked at my lab sheet from Quest and all of the test names are entirely in caps (a formatting thing with Quest). Mine doesn't say "deamidated", but just Gliadin AB IGG and Gliadin AB IGA. Wonder if those are the same thing? My IGA was normal, but the IGG was high. Were you gluten-free when your tests were done?

Saw you're in Baltimore. I'm in south-central PA, but am using a doc I found in Owings Mills, MD. So far, very happy with him.

Looks like Caps don't matter.. I had the blood work done a day or 2 after I was diagnosed with DH by biopsy and still under the influence of gluten. I've been gluten-free since except for the hidden oops and I'm suffering from one this weekend.

Owings Mills is located in Baltimore County. I live on the other side of the County(NE side), Kingsville area.