Confused About Test Results

[musicmom2]

Hello All!

I recently discovered this site when doing a web search to try and understand my Enterolab results. I don't have health insurance so to make an appointment with a doctor to explain them isn't feasable (I'm actually not very confident of their knowledge on this subject as well) So any help here would be greatly appreciated.

Symptoms: Daily Abdominal pain mostly in the morning and night. stabbing pains mostly in the left side. (Doesn't matter if I've just eaten or not) daily (5-10 good jabs)chest pains, nauseousness, breathing problems, hot and cold flashes mostly associated with chect pain. bruising which shows up magically over night(no idea what that's about?!) frequent bad headaches, foginess in my head and difficulting speaking (although this happens maybe once a month along with all the sudden not being able to see peripherally) Leg pains, I always thought were "growing pains" and now I'm waking up with joint pain in my arms. I didn't have any of this until 3 years ago when I went through a very emotional time in my life. I thought it was an ulcer. I'm so past that time in my life and emotionally upbeat but the pain persists. I'm 21 years old and sound like an old woman.

Here are my results:

Fecal Anti-gliadin IgA: 11 units (normal range less than 10)

Transglutaminase IgA :4 (normal range less than 10)

Anti-Casein IgA: units 5(normal range less than 10)

Microscopic Fecal Fat Score :Less than 300

HLA-DQB1 Allele 1 201

HLA-DQB1 Allele 2 202

HLA-DQ 2,2

With such low units on Anti-gliadin IgA (11)(They said no doctor would order a blood test with numbers that low),no seeming malabsortion on fecal fat score, I'm not sure if I should be testing for something else? I've dabbled with eating less gluten but haven't been on a true gluten free diet yet.

Thank you so much for ANY help!!

[Skylark]

You can't diagnose this yourself! You are talking about serious neurological issues and possibly a bleeding disorder with the bruising. Your symptoms are not celiac and you have a basically negative Enterolab panel (which is rather rare).

You need to do whatever it takes to get medical care. There are low income clinics in many cities, or possibly you could qualify for Medicaid.

[ravenwoodglass]

I agree you need to see a doctor as soon as you can. If you have an episode where you are unable to speak and your vision is being effected get yourself to an ER immediately while it is going on. You could have something serious going on like ministrokes. You could also be celiac but your negative stool testing would be unusual if you are since Enterolab tests are if anything over sensitive. Get yourself checked out please.

[musicmom2]

I've exhausted my money supply and my patience going to doctors. they can't find anything wrong other than low iron and vitamin D levels. The symptoms i describe other than the daily stomach and chest pains are episodic and happen periodically. Are the other symptoms i described uncommon to celiac or gluten intollerance?

I'm a little confused. When I called Enterolab they said that my level of Anti-Gliadin IGA was elevated at 11 units and that I was definately gluten intollerant. Along with being a HLA-DQ2,2 I thought it was pointing toward celiacs. Is that incorrect?

I finally went to a Gluten RN and she encouraged me to get tested because of the commonality of my symptoms and celiacs

More confused than ever

[musicmom2]

Sorry I didn't mean to imply that I had not been to doctors. I have, but no longer am eligible under my parents insurance since i turned 21. I've tried to get on the oregon health plan but they aren't taking any one my age unless they're pregnant.

The symptoms I described above (except for daily bouts of stomach pain and sporadic chest tightness) are not constant and a lot of times aren't sustained until I can get to a doctor. They couldn't find anything except that i was anemic and low on vitamin D. I was referred to a gluten RN who listened to my story and thought I fit many of the symptoms for celiac. But now it's sounding like maybe its something else? Do Celiac not suffer from the symptoms I've described? Does anyone out there With HLA DQ2,2 and Anti-Gliadin IgA of 11 units have celiacs or am I totally on the wrong track. I called Enterolab and they said my results indicated that I definately needed to go on a gluten-free Diet, but with no real fecal fat malabsortion. Do I? Is it possible to have Celiacs and not show signs of fecal fat malabsortion?

Sorry to ask so many questions, but I respect the opinions here. I was elated to think I might be going on the direction by going gluten free but now I'm more confused than ever.

[ravenwoodglass]

Sorry I didn't mean to imply that I had not been to doctors. I have, but no longer am eligible under my parents insurance since i turned 21. I've tried to get on the oregon health plan but they aren't taking any one my age unless they're pregnant.

The symptoms I described above (except for daily bouts of stomach pain and sporadic chest tightness) are not constant and a lot of times aren't sustained until I can get to a doctor. They couldn't find anything except that i was anemic and low on vitamin D. I was referred to a gluten RN who listened to my story and thought I fit many of the symptoms for celiac. But now it's sounding like maybe its something else? Do Celiac not suffer from the symptoms I've described? Does anyone out there With HLA DQ2,2 and Anti-Gliadin IgA of 11 units have celiacs or am I totally on the wrong track. I called Enterolab and they said my results indicated that I definately needed to go on a gluten-free Diet, but with no real fecal fat malabsortion. Do I? Is it possible to have Celiacs and not show signs of fecal fat malabsortion?

Sorry to ask so many questions, but I respect the opinions here. I was elated to think I might be going on the direction by going gluten free but now I'm more confused than ever.

Yes the symptoms that you describe can be from celiac. I think you are doing the right thing by giving the diet a shot. Since you have been seen by the doctor for the issues and they haven't found anything wrong if you are not going to do more testing for celiac do give the diet a good strict try.

Yes it is possible to have celiac and not have malabsorption especially if you are not far along in the villi destruction. You may have more brain than bowel impact, which would account for the speech issues and such that your having. I had them also although by the time I was diagnosed they were no longer sporatic.

Give the diet a good strict try as you have nothing to lose by doing so.

The original concern from both myself and I think from the other poster was that you hadn't seen a doctor for the issues. Glad to hear you have.

[Skylark]

Sorry I didn't mean to imply that I had not been to doctors. I have, but no longer am eligible under my parents insurance since i turned 21. I've tried to get on the oregon health plan but they aren't taking any one my age unless they're pregnant.

The symptoms I described above (except for daily bouts of stomach pain and sporadic chest tightness) are not constant and a lot of times aren't sustained until I can get to a doctor. They couldn't find anything except that i was anemic and low on vitamin D. I was referred to a gluten RN who listened to my story and thought I fit many of the symptoms for celiac. But now it's sounding like maybe its something else? Do Celiac not suffer from the symptoms I've described? Does anyone out there With HLA DQ2,2 and Anti-Gliadin IgA of 11 units have celiacs or am I totally on the wrong track. I called Enterolab and they said my results indicated that I definately needed to go on a gluten-free Diet, but with no real fecal fat malabsortion. Do I? Is it possible to have Celiacs and not show signs of fecal fat malabsortion?

Sorry to ask so many questions, but I respect the opinions here. I was elated to think I might be going on the direction by going gluten free but now I'm more confused than ever.

Don't be sorry about questions. It's why we're here. I'm really glad to hear that you have had a medical workup. We're not doctors on this board and sometimes people try to self-diagnose health problems that really need medical care.

You do have some of the symptoms of celiac, especially the anemia and vitamin deficiency and the nausea and pain. The neurological episodes and bruising were what had me worried, as they are not typical celiac symptoms and can be associated with other health problems like clotting disorders and strokes. Thing is, it seems like gluten sensitivity can affect pretty much any system in the body.

You definitely have the genetic background for gluten sensitivity. Enterolab tests are highly sensitive, so an 11 on their tests with a 1-10 range is more of a borderline result. Their result interpretation is a little exaggerated.

Here's the thing. There are people who feel spectacularly better off gluten, no matter what their test results say. There is no harm in trying the diet to see what happens, and I absolutely hope you're onto the right thing.

[nora-n]

Hi, about your gene test:

Enterolab uses the old names, DQ2 and DQ2 and puts a comma between them.

Actually, your DQ genes are: DQ2,2 with the 0202 beta chain, there have been several people here with lots of symptoms with 0202.

DQ2,5 with the 0201 beta chain, and this is the main celiac gene.

I think you just did not eat enough gluten for the tests to be highly positive.

I had negative celiac tests too because I was by accident gluten free (low carb)

Afterwards, I found out one has to eat very much gluten for the celiac tests to show up positive.

There are many other places in the body where gluten causes havoc.

The ordinary celiac tests, and the Enterolab test, are just for the gut bit.

Your vitamin D and anemia and DQ2,5 do point to celiac or gluten intolerance.

Now you could either go on a gluten challenge, 0,5 grams gluten per kg weight for a minimum of 6 weeks, better three months, and then get a blood test, or go completely gluten free to see if you get better.

I think the blood tests are expensive in the U.S?

What about the free celiac blood tests that some hospitals offer every fall?

Of course one needs to have eaten very much gluten before taking the mainstream celiac blood tests.

In some countries, they have the home tests for ttg-IgA and they do not cost much. They are jsut as good, or even more sensitive, than the hospital IgA-ttg test.

[Gardening]

Another possibility is that you are IgA deficient, and so you would otherwise spike a much higher number on Enterolab, but you don't make enough IgA.

This is rare, but this is the reason a blood celiac panel includes Total IgA as one of the tests, to make sure the other tests (IgA tissues transglutamase, etc) are valid.

I think it's worthwhile to try a completely gluten-free diet (it could take 3-6 months to see results).

[musicmom2]

Thank you so much for all your responses! This site has helped me me so much in just trying to understand what I need to do to go gluten free. At this point I'm willing to try whatever it takes to feel better. Because some symptoms are sporadic and I can still funtion throught the ones that are daily, Most people don't think anything's wrong, I've actually been told its probably just "in my mind". The compassion and validation you give each other is awesome.

2 1/2 years ago I suffered with so much constant pain it resulted in a coma. At that time I was tested and although they found evidence of inflamation in my liver (I was yellow from jaundice) Anemia and vitamin deficencies they could not understand what had caused this. No one ever suggested looking at my diet. However because I was in a coma all they fed me was intraveniously and eventually I could take friut smoothies and pureed vegitables. I experienced a slow recovery and was out of pain for the first time since it started. I was pain free for almost 2 months but then it started up again which is where I'm at now. I realized that it was only after going back to "regular food" that I started experiencing pain again which is what caused me to consider gluten. My father has MS and his doctor recently suggested he try a gluten free diet. My father couldn't really tell me why he suggested this, just that he did.

I was concerned that the "low positive" was not proof that gluten was my problem. I was tested for milk, soy and nuts and that all came up negative. I'm going through my kitchen today and going to really give this a serious try. Thank you all!