Negative ... But Am I?

[chuck-s]

I'm male, 58, and have had "IBS" problems for years. About 25 years ago I started having a symptom that has gradually gotten worse as I've gotten older. About 15 minutes to 2 hours after I eat I start getting some subtle cramping in my abdomen which, after a period of time (usually 30-60 minutes) will increase in intensity and comes in "waves". I've told my wife it's like having a baby ... I can almost "time" the cramps in that how far apart they are, how intense they are, etc. Anyway, shortly after the cramps start there is no stopping them, it's like I drank a bottle of HalfLytely and it want's out NOW! So to the bathroom I go and the pain is just tremendous. Everything in the colon comes out (solid, no diarrhea) until there is nothing left but liquid at the end (sorry to be so gross). In my younger days I could put up with the pain a lot easier than I can these days. Also, as time as progressed I seem to get more of these attacks and it's really beginning to wear on me.

In the past 5 years I have also had some other problems show up, such as mild anemia, weight loss (20 lbs over 4 years), some co-ordination problems and extreme fatigue. So I was talking to my daughter a few months back and she (who is 25) says she was having "gut" problems and she took it upon herself to go gluten free and has really improved. So I figured I would try going gluten free and have been so since around the 1st of June.

I then found a gastroenterologist and went to see him in late June. He asked me if anyone had ever checked me for Celiac Disease and I said no. So he says, let's do some blood tests and schedule you for an Endoscopy. I said fine, and I was very encouraged that Celiac could been the root of my problems.

Had the blood tests in late June, but I had been off gluten for 3 weeks so I wasn't surprised when they came back negative. Had the endoscopy on July 14th. They found a small polyp in my stomach, and took three biopsies from the small intestine. Yesterday the doctor called and said all the biopsies came back negative and that all that he could see from the Endoscopy was a slight problem with GERD. He gave me some pictures of the endoscopy and I'll have to say the pictures I saw don't look abnormal, based on some of the pictures I have seen on the internet who really have Celiac Disease.

Soooo ... I am presented with a dilemma. Based on scientific tests it does not appear I have Celiac Disease. However, I have not had an "attack" since I started going gluten free, so on the surface it seems to have helped my digestion. So, even though I have no evidence of Celiac Disease could I still be gluten intolerant? If so, is that more like an allergy to gluten or wheat?

By the way, I do not have the exact Celiac screening blood test results in hand yet, I will be getting them sometime in the next few days. Of the other tests my doctor did, my RBC and Hematocrit were low, while my MCH was high. This is typical of my tests for the last 5 years. I also show a high Ferritin level of 974 and a low Tranferrin level of 185. High Ferritin usually means an Iron Overload condition, but I saw a Hematologist a couple of years ago and he said in my case the Ferritin was due to inflammation somewhere in my body, which I was hoping was due to Celiac Disease. No luck there

So for the time being I guess I DO NOT have Celiac Disease, but I MIGHT BE gluten intolerant. So as long as it's helping I will continue to be gluten free and see if any of my other symptoms improve.

Just an observation ... I find it strange that, in a forum devoted to Celiac Disease, the SPELL CHECKER does not recognize the word Celiac and keeps underlining it in red!

[Takala]

I think the spell checker is in your web browser/operating system

Gluten intolerance is just like Celiac, or early Celiac, without the diagnosis, I used to say. Now the researchers are refining this definition, but it's still more of an auto immune response to a set of grain proteins gone awry, than it is an allergy. My being allergic to ragweed doesn't lead to bone loss.

[chuck-s]

Hmmm, you are right, never thought of that. I use Firefox, and it DOES have a spell checker built-in. I've just taught it the word "Celiac" so no more red marks now!

I think the spell checker is in your web browser/operating system

[rosetapper23]

Both blood tests and endoscopy results can be iffy. There are four very different blood tests for celiac disease, so you may wish to ask for more testing (or not). As for the endoscopy, the gold standard is to take a minimum of FOUR biopsies, which your doctor didn't do....and sometimes the scope is not long enough to reach the damaged part of the small intestine. Therefore, one of the leading experts on celiac, Dr. Alessio Fasano, does not put a lot of faith in endoscopies. There are so many variables involved (the experience of the surgeon and the pathologist and the location of the damage), this is really an unreliable test. If it comes back positive, though, you can bank on it. Unfortunately, though, false negatives appear to be common. Based on your symptoms and the relief from them on a gluten-free diet, I imagine that it's quite possible that you are gluten sensitive or have celiac. If you don't feel the need to have a doctor attach a name to what you have, simply go gluten free for life and tell people you're gluten intolerant.

[Jenniferxgfx]

I had negative blood test and biopsy too and am certain gluten is bad for me. What folks here told me is it doesn't matter what you call it, just don't eat it if it makes you sick

Welcome to the club! Maybe someday there will be more accurate tests!

[Sarah Alli]

By the way, I do not have the exact Celiac screening blood test results in hand yet, I will be getting them sometime in the next few days. Of the other tests my doctor did, my RBC and Hematocrit were low, while my MCH was high. This is typical of my tests for the last 5 years. I also show a high Ferritin level of 974 and a low Tranferrin level of 185. High Ferritin usually means an Iron Overload condition, but I saw a Hematologist a couple of years ago and he said in my case the Ferritin was due to inflammation somewhere in my body, which I was hoping was due to Celiac Disease. No luck there

How interesting... you have a low red blood cell count and hematocrit (indicating possible anemia) and high ferritin (which would pretty much rule out iron deficiency anemia).

Do you have the full results of your CBC? Specifically, mean corpuscular volume (MPV) and red blood cell distribution width (RDW)?

Also, you might be interested in getting tested for folate deficiency, and get the rest of your vitamins checked if possible as this might give you an insight. Those would typically be lowered in a person with celiac disease, especially someone who has been symptomatic for so long.

Worth a shot, right?

[chuck-s]

My doctor and I thought of that during the initial visit ... in addition to the CBC he did Complete Metabolic Panel and also tested B12 and Folate. My B12 was 1027 (Lab range 243-894) and my folate was >20.0 (lab range 4.5-32.2). Bear in mind I take a multivitamin daily. Based on the results my body isn't having any trouble absorbing B12 and folate. Again, I had hoped these levels would be down, further supporting a possible Celiac diagnosis.

On my CBC, here are the results:

WBC 5.8 (4.1-10.9)

RBC 3.95 L (4.00-5.50)

Hemoglobin 12.4 L (12.5-16.5)

Hematocrit 37.1 L (41.0-53.0)

MCV 94.0 (80.0-94.0)

MCH 31.7 L (27.0-31.0)

MCHC 33.8 (29.0-37.0)

Platelets 134.0 (130.0-400.0)

MPV 8.2 (7.4-10.4)

RDW 12.3 (11.6-14.8)

Eosinophil% 5.8 H (0-5.0)

These number were a little better than ones I had back in April of this year. I was hospitalized with some chest and neck pains and the cause was never identified, other than ruling out any cardiac problems. I started taking a multivitamin (without IRON) a month later, so that might have helped a bit.

The high Ferritin I have is quite a puzzle. In 2008 it was 705, in 2009 it was 871 and in 2011 it is 974. Normally Ferritin is a marker for Iron Overload and if you have that condition the buildup of iron in your body can do bad things to you. My brother in law actually has Hemochromatosis and has to give blood every so often to keep his iron level under control. In my case I have been told my high Ferritin is the result of my body reacting to something, such as an infection or inflammation or something like that. The way it's been explained to me is the body has a "defense mechanism" that springs to life when the immune system detects something it thinks is an "invader" (like a bacterial infection). The body starts hording iron in an attempt to "starve" the invader of any iron. Look up "Anemia of Chronic Disease". I was hoping my body's reaction to gluten was the trigger, but the tests don't prove that out. However, since I seem to feel better on a gluten free diet it will be interesting to see if my ferritin declines after time. My doctor will check my level again in 3 months and see if there is any change.

How interesting... you have a low red blood cell count and hematocrit (indicating possible anemia) and high ferritin (which would pretty much rule out iron deficiency anemia).

Do you have the full results of your CBC? Specifically, mean corpuscular volume (MPV) and red blood cell distribution width (RDW)?

Also, you might be interested in getting tested for folate deficiency, and get the rest of your vitamins checked if possible as this might give you an insight. Those would typically be lowered in a person with celiac disease, especially someone who has been symptomatic for so long.

Worth a shot, right?

[Sarah Alli]

My doctor and I thought of that during the initial visit ... in addition to the CBC he did Complete Metabolic Panel and also tested B12 and Folate. My B12 was 1027 (Lab range 243-894) and my folate was >20.0 (lab range 4.5-32.2). Bear in mind I take a multivitamin daily. Based on the results my body isn't having any trouble absorbing B12 and folate. Again, I had hoped these levels would be down, further supporting a possible Celiac diagnosis.

On my CBC, here are the results:

WBC 5.8 (4.1-10.9)

RBC 3.95 L (4.00-5.50)

Hemoglobin 12.4 L (12.5-16.5)

Hematocrit 37.1 L (41.0-53.0)

MCV 94.0 (80.0-94.0)

MCH 31.7 L (27.0-31.0)

MCHC 33.8 (29.0-37.0)

Platelets 134.0 (130.0-400.0)

MPV 8.2 (7.4-10.4)

RDW 12.3 (11.6-14.8)

Eosinophil% 5.8 H (0-5.0)

These number were a little better than ones I had back in April of this year. I was hospitalized with some chest and neck pains and the cause was never identified, other than ruling out any cardiac problems. I started taking a multivitamin (without IRON) a month later, so that might have helped a bit.

The high Ferritin I have is quite a puzzle. In 2008 it was 705, in 2009 it was 871 and in 2011 it is 974. Normally Ferritin is a marker for Iron Overload and if you have that condition the buildup of iron in your body can do bad things to you. My brother in law actually has Hemochromatosis and has to give blood every so often to keep his iron level under control. In my case I have been told my high Ferritin is the result of my body reacting to something, such as an infection or inflammation or something like that. The way it's been explained to me is the body has a "defense mechanism" that springs to life when the immune system detects something it thinks is an "invader" (like a bacterial infection). The body starts hording iron in an attempt to "starve" the invader of any iron. Look up "Anemia of Chronic Disease". I was hoping my body's reaction to gluten was the trigger, but the tests don't prove that out. However, since I seem to feel better on a gluten free diet it will be interesting to see if my ferritin declines after time. My doctor will check my level again in 3 months and see if there is any change.

Your MCV is right on the high edge of normal. A high MCV would indicate macrocytic anemia, which is NOT associated with iron deficiency anemia. So that makes sense.

Your RDW is normal, but you have a low hematocrit, which could point to blood loss somewhere- I assume that's been looked into? An ulcer would cause some of the symptoms you mention and could also be bleeding which would mess with your CBCs.

Hemochromatosis is really a fascinating disease. I was just discussing it with my fiance this morning... It's one of those things that I doubt there's a lot of research for a cure going on because the treatment is so charitable.

I had some tests done recently- my Vitamin B-12 and Folate were also very high. The B-12 was about twice the normal lab range, and that's without taking supplements. My iron was low, though.

Stick with the gluten free if it's helping, but definitely explore other things too because your high ferritin is not something that should be ignored and it's best to leave no stone unturned. It might be worthwhile to get food allergy testing too.

[beebs]

Have you talked to your Dr about your pain? It sounds much like mine - comes in waves...it feels colicky, I've been in labour and my pain is almost (but not quite) as bad. And its like having contractions lasts 2-3 hours- anyway - my GI thinks its transient intussusception - and yes - it can be caused celiac, there have been a few studies done about it, but it isn't a common symptom at all and most Drs wouldn't connect the two. And my bloods are negative as well....hmmmmm

[chuck-s]

Yes, the pain I reported here is exactly what brought me to my current gastroenterologist. Before I developed these "attacks" in my 30s my so-called "IBS" (spastic colon?) was quite manageable. The fact that I lived with these attacks for so many years (I'm 58 now) gives you and idea of how much I detest going to doctors (like most guys, I guess). What changed in the last 5 years is a change in the frequency of the attacks (more of them) and the development of mild anemia and some other problems. I couldn't put it off any more.

Before I went gluten free I had also discovered that if I ate smaller meals I tended not to have as many attacks. I typically eat half my dinner, put the other half in the fridge and come back in an hour and reheat everything and finish the second half. Drove my wife a little crazy at first, but she's used to it now. I still do that now, even though I have gone gluten free. It's amazing what a person will do when severe pain is involved. If can go six months without an attack I might work up the courage to return to normal meals.

Have you talked to your Dr about your pain? It sounds much like mine - comes in waves...it feels colicky, I've been in labour and my pain is almost (but not quite) as bad. And its like having contractions lasts 2-3 hours- anyway - my GI thinks its transient intussusception - and yes - it can be caused celiac, there have been a few studies done about it, but it isn't a common symptom at all and most Drs wouldn't connect the two. And my bloods are negative as well....hmmmmm

[frieze]

remember that you were gluten free for 3 weeks before the testing....so the blood is probably not accurate....and the biopsy number was not enough/up to the standard of care......AND the diet is working....

the elevated eos is a sign of infammation/allergy good luck