When Blood Results Are Negative But Still Have Symptoms

[TracyB]

I have asked my doctor to send me for a biopsy regardless of the blood results - I just want to put this all to rest. She agreed but there is no telling how long an appt. will take. There is somebody on this board in the same city in Canada as I am and even with a positive blood result it was 5 mos. before she was able to get in with a gastro. The likelihood is that somebody like me will be put at the bottom of the list for appts.

But my question is - if the range for the TTG is 0.0-20.0 and my reading was 2.8 - at which point do you question it's validity? I would say that is a fairly low reading. I do have symptoms and always have (since 3 yrs. old) but have always been told it's IBS. And it could be - that would be better than celiac of course - except for wanting to know WHY I feel like I do.

BUT, I feel very unwell all the time. Having D or C is not fun. But it's the headaches and body aches and fatigue that are getting to me now.

I'd love to go gluten-free but until I know when this biopsy might occur I'm reluctant to do that. I figure if I have to wait many months, than I'll try gluten free for a few months and see how I feel - then still have time to go back on gluten before the biopsy.

I guess I'd like to know if my range is so low that I needn't even entertain the idea of celiac. I was thinking that if it was something like 18 or 19 than I'd be more inclined to believe I MIGHT have celiac.

What do you think?

TracyB

[Lisa]

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[edit] Diagnostic use

Serology for anti-tTG antibodies has superseded older serological tests (anti-endomysium, anti-gliadin and anti-reticulin) and has a strong sensitivity (99%) and specificity (>90%) for identifying coeliac disease. Modern anti-tTG assays rely on a human recombinant protein as an antigen[7]

[lizard00]

Did they test your total IgA serum? That would be a good number to have, if you have it.

If you could post your results here, we can help you.

[TracyB]

Did they test your total IgA serum? That would be a good number to have, if you have it.

If you could post your results here, we can help you.

Here's the results - I think everything that was needed was run...?

IgA T. Transglutaminase - Celiac disease is negative and the patient is IgA sufficient. This screen is only accurate if the patient receives a gluten containing diet. False negative screens rarely occur. If you still suspect celiac disease, the patient should be referred to a gastroenterologist for further evaluation prior to initiating a gluten-free diet.

Tissue 2.8 (0.0 - 20.0) kU/L

Transglutaminase IgA

Immunoglobulin A 2.46 (0.60 - 4.20) g/L

Immunoglobulin G 10.13 (6.8 - 18.00) g/L

Immunoglobulin M 0.48 (0.40 - 3.00) g/L

Ferritin 33 (10-290) ug/L

Thyroid Stimulating Hormone 1.49 (0.20 - 6.00) mU/L

Tracy B.

[cyberprof]

Hi Tracy,

Regarding the chances of having celiac with your results, I can only offer my experience. I found out that I had celiac from a biopsy first, with the blood test - which was negative - done afterward. So you can definitely have celiac but have nothing zip nada show up in your blood work. There are others here with similar results. My doctor said that since I didn't have much damage, the level wasn't high enough to show in the blood work. I "only" had Marsh Level 1 damage, and did not have "blunted" villi. I've heard, anecdotally, that there are some here that had totally flat villi and still didn't test positive on blood work.

My opinion is that the blood tests are not very sensitive. If the blood work is positive, there are few false negatives. The reverse is not true.

Of course, I'm not a doctor and not an expert but I would say that just because your blood work is negative doesn't mean that you don't have celiac.

As for the question of whether or not to go gluten-free now or wait...that's harder.

~Laura

I have asked my doctor to send me for a biopsy regardless of the blood results - I just want to put this all to rest. She agreed but there is no telling how long an appt. will take. There is somebody on this board in the same city in Canada as I am and even with a positive blood result it was 5 mos. before she was able to get in with a gastro. The likelihood is that somebody like me will be put at the bottom of the list for appts.

But my question is - if the range for the TTG is 0.0-20.0 and my reading was 2.8 - at which point do you question it's validity? I would say that is a fairly low reading. I do have symptoms and always have (since 3 yrs. old) but have always been told it's IBS. And it could be - that would be better than celiac of course - except for wanting to know WHY I feel like I do.

BUT, I feel very unwell all the time. Having D or C is not fun. But it's the headaches and body aches and fatigue that are getting to me now.

I'd love to go gluten-free but until I know when this biopsy might occur I'm reluctant to do that. I figure if I have to wait many months, than I'll try gluten free for a few months and see how I feel - then still have time to go back on gluten before the biopsy.

I guess I'd like to know if my range is so low that I needn't even entertain the idea of celiac. I was thinking that if it was something like 18 or 19 than I'd be more inclined to believe I MIGHT have celiac.

What do you think?

TracyB

[TracyB]

Hi Tracy,

Regarding the chances of having celiac with your results, I can only offer my experience. I found out that I had celiac from a biopsy first, with the blood test - which was negative - done afterward. So you can definitely have celiac but have nothing zip nada show up in your blood work. There are others here with similar results. My doctor said that since I didn't have much damage, the level wasn't high enough to show in the blood work. I "only" had Marsh Level 1 damage, and did not have "blunted" villi. I've heard, anecdotally, that there are some here that had totally flat villi and still didn't test positive on blood work.

My opinion is that the blood tests are not very sensitive. If the blood work is positive, there are few false negatives. The reverse is not true.

Of course, I'm not a doctor and not an expert but I would say that just because your blood work is negative doesn't mean that you don't have celiac.

As for the question of whether or not to go gluten-free now or wait...that's harder.

~Laura

Hi Laura - thanks for the reply. Can I ask - do you know what the blood results were - I think the TTG is the one that's 0.0-20.0 scale and is generally considered a sensitive test. What prompted a biopsy in your case, instead of the usual blood test first? And I wondered how long you may have had signs of celiac before the biopsy?

I saw your signature on your son and his growth patterns. I wonder why they wouldn't do a biopsy on him when you have celiac?? That's not sensible. Has he gained weight/height since being gluten free?

It was my son and his problems that prompted me to finally see about myself. I have had so many people tell me to get checked for celiac including my neighbour who has it after misdiagnosis for years of IBS. I don't know - my symptoms are something that has been troublesome since I was only 3 yrs. old. I have had worse pain in past years than lately but now my symptoms are effecting my daily life more - the headaches, fatigue are horrendous at times. It's hard to get through the day and my energy is so bad. It's exhausting...so I thought that if I truly had celiac all these years that my bloods would reflect that.

At any rate getting my son checked at the same time was worthwhile. His immune system is very low (immunoglobulins G and M) and his iron and iron stores are also low as well as something else but can't remember. So need to get him to the doctor asap to go over these results. My son has ADD Inattentive Type and has what seems like the brain fog that I experience - except I don't have any signs of ADD and never have. I found a few mentions about learning and celiac and that celiac or undiagnosed celiac really, can cause learning problems due to the way it can effect the brain - foggy, unfocused, etc. Anyway, thanks for the info.! (BTW my son is 17).

TracyB

[cyberprof]

Hi Tracy,

I had celiac symptoms beginning from about age 17 (I'm 48 now) but no doctor ever worried. I had bloating, D, gas, all daily. I also had mouth ulcers at least monthly, joint pain, and developed anxiety and low-level depression. About 3 years before diagnosis, I started feeling worse and told the docs about the bloating, so they checked me for ovarian cancer but when that was negative they just ignored it and told me to lose weight. (I'm about 30 pounds overweight, 20 of which were gained in the year before diagnosis.). What finally happened was that I got terrible stomach pains, vomiting for no reason and heartburn and I went to the doc and she thought I had an ulcer, so they scheduled the 'scope, where they took samples and found no ulcer but celiac instead. Totally unexpected to me but there is a family history of Type I diabetes, stomach cancer and digestive troubles on both my parents sides, plus my sister has Graves Disease.

My son's bloodwork was also negative. He was deficient in several vitamins and iron and has a "bone age" of 12.5 and he looks like he's 12. They offered to do an endoscopy on him but my hubby is a medical-phobe and is terrified of the risks, given that they give kids general anesthesia. Yes, the risk is really low but hubby says any risk is too high (and he's the son of a neurosurgeon and a nurse...go figure). Hubby wanted son to go gluten-free without tests and son refused without some evidence. We compromised by doing Enterolab. He's dairy free too. Finally in August he started growing and maturing - hooray! He is still underweight but is eating well and taking lots of vitamins and minerals. The causal factor, in my opinion, was that his body was so malnorished and not absorbing vitamins that he didn't grow and now that he is absorbing more, he'll catch up.

When my son is an adult, if he wants then he can do a gluten challenge and a 'scope. We'll see what happens.

[TracyB]

Hi Tracy,

I had celiac symptoms beginning from about age 17 (I'm 48 now) but no doctor ever worried. I had bloating, D, gas, all daily. I also had mouth ulcers at least monthly, joint pain, and developed anxiety and low-level depression. About 3 years before diagnosis, I started feeling worse and told the docs about the bloating, so they checked me for ovarian cancer but when that was negative they just ignored it and told me to lose weight. (I'm about 30 pounds overweight, 20 of which were gained in the year before diagnosis.). What finally happened was that I got terrible stomach pains, vomiting for no reason and heartburn and I went to the doc and she thought I had an ulcer, so they scheduled the 'scope, where they took samples and found no ulcer but celiac instead. Totally unexpected to me but there is a family history of Type I diabetes, stomach cancer and digestive troubles on both my parents sides, plus my sister has Graves Disease.

My son's bloodwork was also negative. He was deficient in several vitamins and iron and has a "bone age" of 12.5 and he looks like he's 12. They offered to do an endoscopy on him but my hubby is a medical-phobe and is terrified of the risks, given that they give kids general anesthesia. Yes, the risk is really low but hubby says any risk is too high (and he's the son of a neurosurgeon and a nurse...go figure). Hubby wanted son to go gluten-free without tests and son refused without some evidence. We compromised by doing Enterolab. He's dairy free too. Finally in August he started growing and maturing - hooray! He is still underweight but is eating well and taking lots of vitamins and minerals. The causal factor, in my opinion, was that his body was so malnorished and not absorbing vitamins that he didn't grow and now that he is absorbing more, he'll catch up.

When my son is an adult, if he wants then he can do a gluten challenge and a 'scope. We'll see what happens.

Hi again - well, your story sounds much like mine. I'm 46 and was diagnosed with IBS after 1 week in hospital and pains in my gut that dropped me to the ground. My Dr. says today that would never have been the diagnosis - and they would look further today.

It really could just be IBS though of course. But I'd like to know for sure.

So happy to hear your son is doing better! My son had some unexpectedly poor blood results, don't know what it all means yet. So I know what it is to worry. Poor kid has always been the one with problems - from 3 months old. No growth issues though - he's 6'3" and about 163 - so very tall and very thin!

Do you remember what your lab results were? How old were you when you were diagnosed finally (sorry if you've already said or it shows in your sig.!).

Thanks again - maybe one day I'll find out why I feel like this - a really bad week - I'm so exhausted....

TracyB (editing this to say I see you were diagnosed nearly 2 years ago - wow, what a long time - 30 years not knowing!)