Need Help With Blood Test Results

[milz45]

A little background. 32yr old male, athletic and in good shape. Symptoms include sleep apnea (probably 100% central), TMJ/Bruxism, anxiety w/ depression, poor memory, LPR reflux (Barrett's esophagus that has since disappeared after PPI therapy), esophagitis, muscle/back soreness on waking, hypogonadism, mental fogginess, low blood pressure ... and they've occurred about in that order. I've been gluten free for almost a year. I've had the occasional slip-up, but I can count them on both hands in that time. I've not really noticed any changes in my symptoms however. I had Alletess IgG and IgE testing April last year...

IgG:

Broccoli, 0.222, class 1

carrot, 0.226, 1

cheese, cottage, 0.852, 3

cheese, swiss, 0.917, 3

egg white, 0.219, 1

egg yolk, 0.268, 1

gluten, 0.224, 1

milk, cows, 0.439, 3

mustard, 0.205, 1

spinach, 0.208, 1

wheat, 0.230, 1

yeast, baker's, 0.439, 3

yogurt, 0.364, 2

IgE:

Egg (whole), 0.30, Class 2

Milk (cow's), 0.23, 2

Peanut, 0.19, 2

Soybean, 0.13, 1

Tomato, 0.11, 1

Wheat, 0.17, 2

I was wheat/gluten/casein free when I took those tests. Most of the other foods that showed up were one's I was eating quite often (maybe leaky gut syndrome??). I abstained from everything that came up for the next 8 months (with 2 or 3 slip-ups). I saw no change in my symptoms, except that my Barrett's esophagus and esophagitis cleared up (GI dr attributes this to the PPI therapy), but I was definitely still refluxing. I requested a celiac panel to see if I did or did not have issues with wheat, because I didn't want to abstain from wheat the rest of my life unless I had to. Here were the results...

Celiac Comprehensive:

Deamidated Gliadin Abs, IgA, 4, Negative

Deamidated Gliadin Abs, IgG, 7, Negative

t-Transglutaminase (tTG) IgA, <2, Negative

Endomysial Antibody, IgA, Negative

Emmunoglobulin A, Qn, Serum, 677, High

Celiac Disease HLA Dq Assoc.

DQ2, Positive

DQ8, Negative

I was still gluten/wheat free when I had these most recent tests done. And I've since found out you should be eating gluten for your antibody counts to do you any good. But the DQ2 was positive, which I don't completely understand the implications of this.

I'm really lost here. I try to do everything right (diet, supplements, exercise), yet I still have these issues. I just want to feel better. I want to get off the medications I'm on. At the beginning of this, I was hoping the gluten-free diet would fix things. Since not seeing any difference, now I don't know if I want the hassle/cost of avoiding it. Any direction you could provide would be very appreciated.

Thanks so much!

[cassP]

your DQ2 gene puts you at risk for developing Celiac Disease. it doesnt mean you have it- it only means you are genetically predisposed to it.

your celiac panel is negative- however you were gluten free for so long- that i would completely consider your panel INACCURATE ..completely null and void.

the allergy results are seperate from intolerances & celiac disease.

have you noticed ANY improvement from going gluten free??? from any of your symptoms??

its possible you're getting small amounts of gluten from cross contamination, or from "gluten free" products. OR like MANY of us- you could have additional intolerance that are keeping u from feeling better??? maybe soy or corn, or dairy, etc....

much luck to u!

[ravenwoodglass]

As the previous poster stated celiac testing was of no value with the length of time you have been gluten free but you do have one of the main genes associated with celiac.

You may want to eliminate everything you had a reaction to with the allergy testing and do make sure you are taking all the needed steps to avoid cross contamination.

You could also ask your doctor to formulate a starting point for you for an elimination diet and do one strictly for a bit to see if you have other problems foods. A symptom and food diary can also be helpful in pinpointing intolerances as the reactions are often delayed and the diary can help you see a pattern.

[frieze]

A little background. 32yr old male, athletic and in good shape. Symptoms include sleep apnea (probably 100% central), TMJ/Bruxism, anxiety w/ depression, poor memory, LPR reflux (Barrett's esophagus that has since disappeared after PPI therapy), esophagitis, muscle/back soreness on waking, hypogonadism, mental fogginess, low blood pressure ... and they've occurred about in that order. I've been gluten free for almost a year. I've had the occasional slip-up, but I can count them on both hands in that time. I've not really noticed any changes in my symptoms however. I had Alletess IgG and IgE testing April last year...

IgG:

Broccoli, 0.222, class 1

carrot, 0.226, 1

cheese, cottage, 0.852, 3

cheese, swiss, 0.917, 3

egg white, 0.219, 1

egg yolk, 0.268, 1

gluten, 0.224, 1

milk, cows, 0.439, 3

mustard, 0.205, 1

spinach, 0.208, 1

wheat, 0.230, 1

yeast, baker's, 0.439, 3

yogurt, 0.364, 2

IgE:

Egg (whole), 0.30, Class 2

Milk (cow's), 0.23, 2

Peanut, 0.19, 2

Soybean, 0.13, 1

Tomato, 0.11, 1

Wheat, 0.17, 2

I was wheat/gluten/casein free when I took those tests. Most of the other foods that showed up were one's I was eating quite often (maybe leaky gut syndrome??). I abstained from everything that came up for the next 8 months (with 2 or 3 slip-ups). I saw no change in my symptoms, except that my Barrett's esophagus and esophagitis cleared up (GI dr attributes this to the PPI therapy), but I was definitely still refluxing. I requested a celiac panel to see if I did or did not have issues with wheat, because I didn't want to abstain from wheat the rest of my life unless I had to. Here were the results...

Celiac Comprehensive:

Deamidated Gliadin Abs, IgA, 4, Negative

Deamidated Gliadin Abs, IgG, 7, Negative

t-Transglutaminase (tTG) IgA, <2, Negative

Endomysial Antibody, IgA, Negative

Emmunoglobulin A, Qn, Serum, 677, High

Celiac Disease HLA Dq Assoc.

DQ2, Positive

DQ8, Negative

I was still gluten/wheat free when I had these most recent tests done. And I've since found out you should be eating gluten for your antibody counts to do you any good. But the DQ2 was positive, which I don't completely understand the implications of this.

I'm really lost here. I try to do everything right (diet, supplements, exercise), yet I still have these issues. I just want to feel better. I want to get off the medications I'm on. At the beginning of this, I was hoping the gluten-free diet would fix things. Since not seeing any difference, now I don't know if I want the hassle/cost of avoiding it. Any direction you could provide would be very appreciated.

Thanks so much!

[/quote)

hypgonadis and Barrett's esophagus can both be related to celiacs.....good luck

[milz45]

Thank you for all the feedback. I'll try to answer a couple of the questions.

I did abstain from all the items on the IgG and IgE testing last year. I even kept a very detailed log to make sure I didn't eat the same thing in a 4 day period. My Dr said to do this so if I had Leaky Gut Syndrome I wouldn't develop more reactions. I was on that diet for at least 8 months with only occasional slip-ups. There were a few work trips where I had a beer or wasn't able to eat unless I had something with gluten. Right now I'm still off everything with the exception of broccoli and eggs.

When I was on the diet, I didn't notice really any difference in my symptoms. The only difference was the most recent endoscopy that showed the Barretts' regressed. I suppose it could have been the gluten-free diet, but I'm thinking reducing my stomach acid through PPI's probably allowed me to heal. I know for a fact I'm still refluxing though. My throat is so irritated that certain foods burn when they go down.

I've thought I should probably keep a food diary and track issues. But I'm to the point where I don't even trust myself to know whether a certain symptom has gotten better or not. With LPR reflux you don't experience heartburn, so it's hard to gage improvement. How long does it take to feel the benefit? Should I get a biopsy test done? I'm afraid I'll just end up with more questions from that.

[mushroom]

Well, there is one way to find out if gluten is a problem for you, and that is to start eating it again. In order to get any accurate testing that is what you would have to do anyway, both for the blood tests and biopsy. In those for whom gluten is a problem, the reintroduction usually causes a great deal of distress, and you would know pretty quickly.

[milz45]

Well, there is one way to find out if gluten is a problem for you, and that is to start eating it again. In order to get any accurate testing that is what you would have to do anyway, both for the blood tests and biopsy.

I ate gluten again off and on for about a week last month. I can't say I noticed a huge difference, but I did notice a bit of a difference. Seemed like I was tired a bit more, didn't sleep as well, stressed, etc. I'm trying to sell my house now too, so I suppose that could be the reason as well. Is there something specific that everyone notices when coming back on gluten, or is it just an increase in the symptoms you had prior? It would be much easier for me to tell if I had felt a whole lot better on the gluten-free diet I suppose.

Can someone explain to me how the biopsy testing works? I have to get an upper GI every couple years because I had Barrett's, so I was wondering if I could have it done then. How long do I have to be on gluten prior to having the test? Is it 100% accurate for Celiac's?

Thanks!

[mushroom]

No, unfortunately the biopsy is not 100% accurate; nor is the blood testing. Each has an approximate 20% error rate for celiac disease , as in false negative. A positive could be caused by something else but it is usually gluten..

To do a real gluten challenge you need a full-on gluten diet, not just a little bit here and there - the gluten equivalent of 3-4 slices of bread a day. And if you have been gluten free it is recommended that you do this for 2-3 months before testing. Everyone reacts differently when doing this. In fact some people seem to have a honeymoon period before they start reacting at alll. For others the first bite of gluten kills them - you are obviously not one of these if you have been nibbling around the edges.Very few people with a high gluten intolerance make it through the 2-3 month challenge - they give up after a couple of weeks because it is too painful. But gluten intolerance runs the whole spectrum - there are silent celiacs who find it had to accept the diagnosis because they have no symptoms at all that they are aware of. From my point of view, I do not find your stated symptoms to be strongly indicative of celiac disease, but everyone reacts differently. Was it recommended to you to go gluten free? Or was this a decision you made yourself? Or perhaps it was your other diagnoses that indicated to doctors that this might be a problem. This was not clear from your original post.

[milz45]

I initially went to a GI doc because I had pressure under my right rib after I ate. So he did an endoscopy and found I had Barrett's esophagus. It was very strange to me, because I NEVER have heartburn. But I've later found out that those with LRP reflux typically don't have heartburn. I had to clear my throat a lot and my voice was dry sometimes, which are both signs of LPR reflux. So I was put on PPI's, and things seemed to get worse. I attribute at least some of it to stress after the barrett's esophagus diagnosis, but either way, I wanted to get to the root of the issue instead of just suppressing my stomach acid. So I went to a nutritional doctor and he was the one who suggested I go gluten/dairy free and take supplements. I did that for about 3 months with little change, and then he had me do the Alltess allergy test. After that, i stopped eating everything that came up on the test. As I said before, I did this for 8mo or more and the only change was that my latest endoscopy showed the barrett's regressed and things had healed well. During all that, my GI dr gave me every test a GI dr gives (ultrasound of liver, hydascan, barium swallow, etc) but nothing came up unusual. I still have the pressure under my right rib after eating, and still clear my throat and cough after eating. So here I am, with a list of symptoms that I've mentioned in the first post, and I don't know whether gluten intolerance or any other food intolerance is causing any harm. I was hoping the last blood test would give me a better answer, but now I think I'm more confused.

[milz45]

This is probably a dumb question, but is there any chance a celiac diagnosis could be confirmed/rejected based on a past biopsy? The first biopsy I had that showed Barrett's was when I had been eating gluten my whole life. Is it a visual test or is it more than that? I was just wondering if they could tell based on whatever info they still have for that biopsy.

[mushroom]

This is probably a dumb question, but is there any chance a celiac diagnosis could be confirmed/rejected based on a past biopsy? The first biopsy I had that showed Barrett's was when I had been eating gluten my whole life. Is it a visual test or is it more than that? I was just wondering if they could tell based on whatever info they still have for that biopsy.

I don't believe so. They have to use special staining and special procedures to test for celiac disease - you can't just pop it under the microscope and say, ah, there it is

[cassP]

This is probably a dumb question, but is there any chance a celiac diagnosis could be confirmed/rejected based on a past biopsy? The first biopsy I had that showed Barrett's was when I had been eating gluten my whole life. Is it a visual test or is it more than that? I was just wondering if they could tell based on whatever info they still have for that biopsy.

also- Barret's is associated with Wheat Consumption.

[milz45]

also- Barret's is associated with Wheat Consumption.

cassP, can you elaborate on this? Is there a link to some studies or documentation? I've not seen or heard this, but would be interested in looking at anything that supports that connection.