Help Interpreting Lab Results?

[amandapants]

Hi there, I'm new here - a friend has found this forum so helpful to her that she recommended I see if anyone can help me understand my lab results and figure out if I have enough of a gluten issue to eliminate or if perhaps there's something else going on.

The quick backstory - I've had IBS for years, a combination of excruciating gut pain, diarrhea, constipation, and bloating. I have struggled with a variety of odd things over the years as well, which may be related or just normal stuff everyone goes through - insomnia, back pain, nerve pain, exhaustion. I am on thyroid meds to treat hypo-thyroid and have been regulated for about 3 years.

I went on a very strict elimination diet b/c of my breastfeeding daughter who had multiple intolerances. I felt pretty good on that diet, then I reintroduced normal food into my diet I started feeling horrible, and continue to feel bad. My newest symptom is this very weird bone pain, mostly at night once the kids are in bed and I slow down. I ache and pain radiates from inside my bones and joints. It's very odd. I reintroduced 'normal' food into my diet around April of this year. I was on a very strict soy, dairy, corn free diet with my daughter, and it was so very strict I did struggle with what to eat. I lost a significant amount of weight, and all my food was made from scratch except a couple kinds of crackers. I also did a 1.5 week gluten elimination to see if I saw any impact in my baby's symptoms and I didn't, though I do understand that wasn't a long enough elimination to see any difference in either of us.

I visited a Functional MD in the Spring who ran a variety of tests on me, and I'm trying to figure out what to do next. My old diet was so strict I don't know that I can go back on that, especially if I also eliminate gluten, so I'd like to narrow it down and eliminate a few key things if possible. I'm not sure if gluten should be on the list. I know I respond poorly to dairy, that's my biggest trigger and I am primarily dairy free already. Here are some results:

Total IgE elevated - reference range <= 87, my result 171

Total IgA - sufficient - 197

tTG IgA - negative - less than 1.2

DGP IgA - negative - 1

AGA IgA - weak positive - 30

AGA IgG - strong positive - 48

I showed moderate IgG response to 2 foods - rice and rye - and low to a few others, including wheat. I showed few reactions and my doctor said my elevated IgE didn't make sense given I didn't have any high responses and relatively few moderate and low ones. It could be a gluten issue, or an unidentified mold issue the doc thought.

Other things, I had low Vit A and D, and borderline iron but sufficient ferritin. My CBC was otherwise normal, sed rate was normal, CRP was slightly elevated. I have a strong case of candida, my yeast is through the roof. I have not done a complete elimination, I started with nystatin last month but it made me vomit each time I took it so I stopped. I have reduced my sugars but not completely eliminated as I've just been overwhelmed with all of this and not sure what to eliminate and what not to bother with.

So given the expertise on this board, do you have any words of wisdom for me? Sorry for such a long post! I just don't know where to begin...there's so much to think about and I'm sure I didn't even list all the relevant stuff. Help please!

~Amanda

[Thea-Bug]

Hmm, lots to think about, not sure how helpful my response will be. I'm unfamiliar with the celiac disease tests you had that were positive....maybe others on here will know more about that? Any chance he can run some other celiac disease related blood tests?

Some of your symptoms definitely sound celiac disease related.....the nerve stuff, bowels, fatigue. And then you mentioned your borderline iron. That's a definite sign. I guess the slightly elevated CRP could indicate some other autoimmune response though maybe? Is that the one for lupus or is the sed rate/ANA only for lupus?

I would definitely try no gluten for longer to see what you think...of course, as you know, don't do that now or else it will invalidate future blood tests and/or endoscopy. My advice would be to seek out this doc again for more celiac disease blood tests OR find another doc who will give you the full battery of celiac disease tests. Good luck to you! I hope you find your answer soon!

Thea

[amandapants]

Thank you for the response Thea! The panel my doctor ran was the Genova Antibody and Celiac Panel. We didn't pursue additional celiac testing since the primary markers were negative. From what I read it wasn't worth it to do more tests unless those were positive, but I don't know much about it. Doc's advice was just 'it would probably be wise to not eat gluten every day'. But I do. For now, anyway.

I just don't really know how much gluten 'intolerance' or sensitivity really means, that's what the test said. Well to be exact it said 'Patient results are consistent with gluten sensitivity'. So perhaps that has something to do with the overall elevated IgE? I don't know, the whole thing is so confusing, and I have so much stuff going on it's just overwhelming even thinking about where to start!

Since I'm primarily dairy free, I don't think just dairy elimination is enough. I could try adding gluten, and I also have to avoid sugar. It makes me feel ill to eat sweets so I know the candida is OOC. So maybe dairy, gluten free, plus very little sugar and avoid soy? I suppose the only way to know if going gluten free will help, is just to commit to it and do it. For at least a month, maybe 6 weeks?

[ravenwoodglass]

I suppose the only way to know if going gluten free will help, is just to commit to it and do it. For at least a month, maybe 6 weeks?

If you are not going to have a biopsy done then it is time to go ahead and try the diet. Give it at least a couple of months and do be strict.

[amandapants]

Given my other test numbers, do you think it would be worth it to have the biopsy though? My doctor - granted he is not a celiac specialist - didn't think additional testing was necessary. Is it common for a biopsy to come back positive if the other tests were negative? I'll do it if it'll help but I don't want to waste my (or my doctor's or husband who has to watch the kids, and on and on you know...) time. I already feel like a total hypochondriac!

[pain*in*my*gut]

Hi there, I'm new here - a friend has found this forum so helpful to her that she recommended I see if anyone can help me understand my lab results and figure out if I have enough of a gluten issue to eliminate or if perhaps there's something else going on.

The quick backstory - I've had IBS for years, a combination of excruciating gut pain, diarrhea, constipation, and bloating. I have struggled with a variety of odd things over the years as well, which may be related or just normal stuff everyone goes through - insomnia, back pain, nerve pain, exhaustion. I am on thyroid meds to treat hypo-thyroid and have been regulated for about 3 years.

I went on a very strict elimination diet b/c of my breastfeeding daughter who had multiple intolerances. I felt pretty good on that diet, then I reintroduced normal food into my diet I started feeling horrible, and continue to feel bad. My newest symptom is this very weird bone pain, mostly at night once the kids are in bed and I slow down. I ache and pain radiates from inside my bones and joints. It's very odd. I reintroduced 'normal' food into my diet around April of this year. I was on a very strict soy, dairy, corn free diet with my daughter, and it was so very strict I did struggle with what to eat. I lost a significant amount of weight, and all my food was made from scratch except a couple kinds of crackers. I also did a 1.5 week gluten elimination to see if I saw any impact in my baby's symptoms and I didn't, though I do understand that wasn't a long enough elimination to see any difference in either of us.

I visited a Functional MD in the Spring who ran a variety of tests on me, and I'm trying to figure out what to do next. My old diet was so strict I don't know that I can go back on that, especially if I also eliminate gluten, so I'd like to narrow it down and eliminate a few key things if possible. I'm not sure if gluten should be on the list. I know I respond poorly to dairy, that's my biggest trigger and I am primarily dairy free already. Here are some results:

Total IgE elevated - reference range <= 87, my result 171

Total IgA - sufficient - 197

tTG IgA - negative - less than 1.2

DGP IgA - negative - 1

AGA IgA - weak positive - 30

AGA IgG - strong positive - 48

I showed moderate IgG response to 2 foods - rice and rye - and low to a few others, including wheat. I showed few reactions and my doctor said my elevated IgE didn't make sense given I didn't have any high responses and relatively few moderate and low ones. It could be a gluten issue, or an unidentified mold issue the doc thought.

Other things, I had low Vit A and D, and borderline iron but sufficient ferritin. My CBC was otherwise normal, sed rate was normal, CRP was slightly elevated. I have a strong case of candida, my yeast is through the roof. I have not done a complete elimination, I started with nystatin last month but it made me vomit each time I took it so I stopped. I have reduced my sugars but not completely eliminated as I've just been overwhelmed with all of this and not sure what to eliminate and what not to bother with.

So given the expertise on this board, do you have any words of wisdom for me? Sorry for such a long post! I just don't know where to begin...there's so much to think about and I'm sure I didn't even list all the relevant stuff. Help please!

~Amanda

Amanda....both your Antigliadin antibodies IgA and IgG were positive! You are at the very least gluten-intolerant based on those results alone. IgE is the antibody class that is involved in allergic reactions, so you could be allergic to just about anything and that one will be elevated.

You do not have to have an elevated tTG to have Celiac Disease. Based on your symptoms, I would definately have the biopsy to rule it out.

Check out my siggy....I have all kinds of non-gastro symptoms that are gluten related. I need to add bone pain, because that is EXACTLY how my legs feel every night!! It is horrible! I don't have a Celiac dx yet (biopsy is next month), but either way I am going gluten free based on my positive DGP.

[ravenwoodglass]

Given my other test numbers, do you think it would be worth it to have the biopsy though? My doctor - granted he is not a celiac specialist - didn't think additional testing was necessary. Is it common for a biopsy to come back positive if the other tests were negative? I'll do it if it'll help but I don't want to waste my (or my doctor's or husband who has to watch the kids, and on and on you know...) time. I already feel like a total hypochondriac!

There are folks that have had negative blood work and a positive biopsy. You do have positive blood work but that does not insure an accurate biopsy result. False negatives for biopsies are about the same as for blood work, at about 30%. Could you have a positive biopsy, yes. Could you have a negative biopsy, yes. Could you have a false negative biopsy, yes.

You do not have to have all the tests be positive to be celiac, heck you can be celiac and have none of the tests be positive.

The choice whether to stay on gluten and get a biopsy or to go gluten free and see if it helps is yours alone to make. Just know you are not a hypochondriac although many of us are made to feel like one before we are finally diagnosed.

[Thea-Bug]

Amanda,

I forgot to suggest liquid iron called Floradix. You can buy it at Whole Foods and probably at other places. It will help get your iron up when your body is not absorbing the capsules. This will help with your energy levels.

As for the testing, I'd say to go for it for the peace of mind. I have already had to field a bunch of questions from people (which is why I like knowing *for sure* what's going on), but that's just me. Everyone is different and of course do what you're most comfortable with.

Good luck!

Thea

[ravenwoodglass]

Amanda,

I forgot to suggest liquid iron called Floradix. You can buy it at Whole Foods and probably at other places. It will help get your iron up when your body is not absorbing the capsules. This will help with your energy levels.

Just make sure your iron levels are low before you supplement. Too much iron is toxic so if supplementing do get the levels checked frequently to make sure the levels are not going to high.

[amandapants]

Thanks for the Floradix recommendation - I actually just bought that brand, but in tablets. My iron wasn't significantly low, just low enough to consider addressing it. My plan isn't to load up on iron like I did when I was pregnant and anemic, but just to take a little extra with my multi and other supplements to keep myself stable.

So it sounds like whether or not to biopsy is just a matter of preference. DH says don't bother, just go gluten free. He compared it to an amnio, he said it wouldn't change a thing about our pregnancy so why bother knowing? Same here, I'll eliminate gluten anyway so what does it matter? But I would like to know. I just don't know that it's worth going through the process, since my GP will probably have to refer me to start that process. Food for thought, I suppose!

Thank you so much for the responses. It really helps to have more experienced opinions!

[pain*in*my*gut]

Thanks for the Floradix recommendation - I actually just bought that brand, but in tablets. My iron wasn't significantly low, just low enough to consider addressing it. My plan isn't to load up on iron like I did when I was pregnant and anemic, but just to take a little extra with my multi and other supplements to keep myself stable.

So it sounds like whether or not to biopsy is just a matter of preference. DH says don't bother, just go gluten free. He compared it to an amnio, he said it wouldn't change a thing about our pregnancy so why bother knowing? Same here, I'll eliminate gluten anyway so what does it matter? But I would like to know. I just don't know that it's worth going through the process, since my GP will probably have to refer me to start that process. Food for thought, I suppose!

Thank you so much for the responses. It really helps to have more experienced opinions!

These are my thoughts about doing the biopsy on a child. If my son does have Celiac disease , I want to be able to give him a solid reason if I am going to make him gluten free for the rest of his life. Sure, while he is little I can make sure he eats gluten free, but as he grows up he is not going to have a reason to stick to the diet. He may think I was just being neurotic or liked to make him eat healthy stuff. If he knows he has a disease that can have serious consequences if he does not control it (like diabetes), he will be more likely to stick to the diet. It takes a lot of work to be gluten free, and peer pressure and convenience may over-rule at some point if he thinks it's just something his mom made up.

I have alway been a scientific person. I am a medical laboratory tech (I have worked in immunology for 9 years before my son was born). Knowledge is power. If I can protect my son's health by giving him every available tool to do so, I will. What is one day of him feeling icky while undergoing a minimally invasive medical procedure when we are talking about the rest of his life?

I totally respect everybody's decision wheather to biopsy or not. I just know my son, he is a stubborn one, and he loves his gluten filled foods. Also, my extended family and hubby would need an official dx, on paper, to get them to cooperate with the diet. They all have signs of Celiac, too, but they all refuse to get tested. But that is a whole different post...

[ravenwoodglass]

These are my thoughts about doing the biopsy on a child. If my son does have Celiac disease , I want to be able to give him a solid reason if I am going to make him gluten free for the rest of his life. Sure, while he is little I can make sure he eats gluten free, but as he grows up he is not going to have a reason to stick to the diet. He may think I was just being neurotic or liked to make him eat healthy stuff. If he knows he has a disease that can have serious consequences if he does not control it (like diabetes), he will be more likely to stick to the diet. It takes a lot of work to be gluten free, and peer pressure and convenience may over-rule at some point if he thinks it's just something his mom made up.

I have alway been a scientific person. I am a medical laboratory tech (I have worked in immunology for 9 years before my son was born). Knowledge is power. If I can protect my son's health by giving him every available tool to do so, I will. What is one day of him feeling icky while undergoing a minimally invasive medical procedure when we are talking about the rest of his life?

I totally respect everybody's decision wheather to biopsy or not. I just know my son, he is a stubborn one, and he loves his gluten filled foods. Also, my extended family and hubby would need an official dx, on paper, to get them to cooperate with the diet. They all have signs of Celiac, too, but they all refuse to get tested. But that is a whole different post...

You make some good points for the biopsy. We do have to keep in mind that the false negative rate on celiac testing for children is just as high, if not higher, than it is for adults and for adults that is 20 to 30%. So we do need to do a trial of the diet either way.

There are doctors who will give an 'official' diagnosis based on positive blood work and response to the diet. Some will give the label 'gluten intolerant' to someone who tests negative but responds well off gluten and becomes very ill with exposure. I feel in the end our response to being gluten free is what matters the most. Perhaps because I suffered for years because doctors would tell me the blood test was negative and just to 'eat more fiber'.

[chrissyinnj]

There are folks that have had negative blood work and a positive biopsy. You do have positive blood work but that does not insure an accurate biopsy result.

How does one that has negative blood work even get a biopsy? Won't most GI doctors refuse based on the blood work?

[mushroom]

How does one that has negative blood work even get a biopsy? Won't most GI doctors refuse based on the blood work?

Yes, probably most doctors will not order biopsy with negative blood work, but certainly some will. Sometimes it depends on severity of symptoms, if blood work is borderline... what side of the bed they got out of????

[amandapants]

Just a quick update since ya'll were so helpful! I sent my labs to the Chicago Celiac center and their doctor recommended retesting via a GI (my tests were through an independent doctor specializing in Functional Medicine). She said it may or may not be Celiac, but I had enough red flags (elevated CRP, low iron) plus digestive symptoms to warrant a specialist visit to rule out various diseases.

I'll update again once I have the results of that visit. Thanks so much!

[amandapants]

Here's my last update! My repeat blood tests and endoscopy biopsies both came back negative. Doc found reflux, inflammation, and some polyps while he was digging around, but nothing in my upper bowel/duodendum. He said it looked very healthy with no symptoms of celiac, and right he was. He thought based on the inflammation in my stomach I might have a bacteria, but that was negative as well.

So now I'm left with nothing. I still feel horrible, worse each day. So I suppose I need to figure out if I'm going to do a gluten-free test just to see if I have an intolerance, or if I'll pursue alternative treatments like acupuncture or NAET. For now I'm going to do a colon cleanse and start eating very cleanly to see if I can get normal BMs again.

Thanks for your help!! I'm so glad this forum exists. And by all means, if anyone has any ideas or suggestions please do share!

[amandapants]

Oh - and I should also add that based on my symptoms and my specific deficiencies (A, D, anemia) the GI said he fully expected a positive Celiac diagnosis, but no such thing happened! Perplexing.

[mushroom]

I would definitely give the gluten free diet a strict three-month trial, because unfortunately the testing results are not definitive for gluten sensitivity, only for actual celiac disease.

[ravenwoodglass]

I have to echo what Mushroom said. Try the diet you have nothing to lose but the pain. Your original blood tests were positive, did you get copies of the new ones? Also get a copy of the actual biopsy reports and how many samples did they test? Damage can be patchy or the tests can be a false negative for a variety of reasons. The truest test is how you respond to the diet and something is causing the inflammation plus reflux is not uncommon for us.