Igg Ttg Negative (3) But Anemic And Low Vit D?

[gfForLife]

I got some blood work done a week ago. My doctor tested for celiac with two blood tests IgG-tTG, and IgG-DGP. She said those are the most sensitive and specific. And she tested my vitmain D and did a CBC.

So, the tTG test came back at 3. The DGP is not back yet. I was eating gluten as much as I could before the test which was full gluten for 2.5 weeks before the test, 2 weeks off gluten before that. on and off gluten for the 3 weeks before that...and off gluten for a whole month before then.... I kept going back and forth because I would be in too much pain and had to give my body a break. So, this was my version of a gluten challenge. It's all I could do. I was light-gluten for 4 months before that so I'm thinking I never gave my body too much of a chance to recover since my strictly gluten free periods were short but maybe not. It doesn't matter since I have a positive dietary result (from what I can tell) so I'm staying gluten free for GOOD now.

So, here's my questions. Is the DGP test going to tell me anything different. She said with the tTG being negative it's unlikely that the DGP will come back positive. If they are the same test then why did she run both?

And, I have low vitamin D (21) even though I've been supplememnting 5,000 IU 3-4 times a week and getting midday sun all summer and I'm anemic (I eat lots of meat, beans, greens so there's no reason for that either). She said it looks like iron deficiency anemia. So, she wants me to see a gastro for malabsorption but what are they going to do for me? Wouldn't an endoscopy be a waste of time...I really don't want to do that. Is there something else that GI doctors can do? and she wants me to get a bone density scan.

Am I on the right path here? Could I still have Celiac or is it likely "just" gluten intolerance. I have everything from pain to fatigue, coordination and neuro problems,depression, GI symptoms from eating gluten (that are still not resolved but better) and possibly other food intolerance. Will the GI doc be able to test for other food intolerances?

I just want to make sure I'm getting the right tests and everything checked out because I've been without insurance for a long time and I've had health issues possibly due to Celiac for a really l o n g time! I just want to feel better. I will not go back to eating gluten. If they wanted me to do another gluten challenge for an endoscopy there's no way!. Having an official diagnosis is not that important.

TIA for any replies!

[Dixiebell]

Yes, you could have celiac disease. The DGP is a fairly new test and I think maybe more sensitive.? The blood tests can give false negatives. This is probably one of the reasons, along with your other symptoms and anemia and low D she wants to go ahead with the endoscopy and the bone density is to check for bone loss. Did she give you a copy of the test? If she did you can post your numbers with the reference ranges, different labs have different ranges. As for the Vit D, mine was 16, range 32-100 and my Dr. gave me a Rx for 50,000 units of Vit D 1x a week for 8 weeks. You might want to ask about that.I am not sure how they test for malabsorbtion, someone else will know. I think your Dr is doing all this in your best interest. You do not have to get the endo done if you don't want to but it can see if you have damage caused from celiac or something else.

[gf-soph]

So, here's my questions. Is the DGP test going to tell me anything different. She said with the tTG being negative it's unlikely that the DGP will come back positive. If they are the same test then why did she run both?

And, I have low vitamin D (21) even though I've been supplememnting 5,000 IU 3-4 times a week and getting midday sun all summer and I'm anemic (I eat lots of meat, beans, greens so there's no reason for that either). She said it looks like iron deficiency anemia. So, she wants me to see a gastro for malabsorption but what are they going to do for me? Wouldn't an endoscopy be a waste of time...I really don't want to do that. Is there something else that GI doctors can do? and she wants me to get a bone density scan.

Am I on the right path here? Could I still have Celiac or is it likely "just" gluten intolerance. I have everything from pain to fatigue, coordination and neuro problems,depression, GI symptoms from eating gluten (that are still not resolved but better) and possibly other food intolerance. Will the GI doc be able to test for other food intolerances?

I'm not familiar with the dgp, so can't give you any advice there. However, it may well be that the gluten free/lite times before testing has allowed your body some healing time and reduced your blood levels. Or it may be that it wouldn't show up anyway, the testing is not 100% and the way gluten effects your body is complex. You sure check plenty of boxes with your symtpoms, you sound a lot like me in fact.

By the usual definition the biopsy is the gold standard for diagnosing celiac. I had a negative biopsy, so technically am gluten intolerant. However I would never call it 'just' an intolerance, as it has made me incredibly sick for years now. Gluten can make you just as sick as a celiac, it just may be that your body is reacting differently, or you could be one of the people who have negative bloodwork but a positive biopsy. My dr treats me the same way as a diagnosed celiac, and refers to me as celiac for simplicity. She knows how unwell I've been, and have had countless blood tests, iron and B12 injections, abdominal ultrasounds and gall bladder scans, bond density testing, and recently an endoscopy and colonosopy, all because of past and continuing symptoms. I am also a member of the celiac society of NSW, so even they don't discriminate!

If you have insurance and can afford it I think there's no harm going to the gastro and seeing what they want to test for. It may be that they want to exclude other serious conditions, or maybe they can do some useful testing. I would go in there with a printed list of your symptoms on and off gluten, and see how informed they are. You absolutely have the right to refuse to eat gluten again, just stick to your guns and explain your reactions. They may consider it worthwhile to biopsy for celiac anyway, I don't know how long they will do it after going gluten-free.

Re other food intolerances, I saw a gastro recently who tested me for the production of some digestive enzymes, as well as parasite and bacterial tests. You can get breath tests for lactose and fructose malabsorption, though I dont know if they are that widely available. He was also able to exclude crohn's as a reason for my longstanding iron deficiency, and find a precancerous polyp, which was lucky.

The deficiencies and your symptoms are a good indication that the gluten is significantly damaging your body. Make sure they test your full iron, B12 and folate, as they all cause anemia. The gastro might want to test for crohns depending on how bad your iron is and how bad your gut symptoms have been. It's good that your dr is being thorough and getting you checked out properly. The bone scan is a good idea, and is a very easy test, just a slightly different type of xray. All in all it sounds like you have a well informed dr, and hopefully can find a good gastro to discuss your situation with. There may be some use in seeing them. It sounds like a gluten free diet is the right thing for you either way!

[gfForLife]

Thank You for all the information. Good to know that the Gastro can check for enzymes nad other possible causes. I've had such bad experiences with doctors I think he'll just want to to do the endoscopy and if I haven't been eating gluten/don't want to then he won't want to bother doing anything else. Yes, this is how I think of doctors. Maybe I'll have better luck.

I know gluten is a serious problem for me now after going on and off it so many times. That's why I said "just" gluten intolerance. From what I've read the complications from gluten intolerance can be just as bad as or worse than Celiac depending on the person. But, how to get my doctors to understand this and treat me like a celiac? My doctors weird about this...I had to push her for the celiac tests and she only wanted to test ttg and go from there and I said no, run them all now because I won't be eating gluten later and then she came back with the DGP test so she seems to know something about it. I also had to ask for the bone scan and a specialist to which she agreed but at first she just said like "yeah, there seems to be some malabsorbtion and possibly due to gluten intolerance so just take more D and Iron and we'll retest later" she didn't even test for other nutrients even though I asked over and over to test for anything that is commonly low due to Celiac but she wouldn't. She's actually getting me those referrals and sending my labs and I'll find a new doctor. Atleast she's agreeing to some of what I ask for so it seems she knows but maybe because I have crappy insurance is hesitant to offer up too much? I know the gastro will be covered fully though.

Dixiebell- I'll try taking that much D, that sounds like a good point to start at. I was taking I guess 25,000 max per week so 50,000 sounds good.

Maybe I'll end up getting an endoscopy anyway. If there's more they can check for that's good to know!. I did take antacids for heartburn for years so there may be damage from that. I don't need those anymore, it was the darn gluten causing heartburn all along

Thanks again!

[Skylark]

Am I on the right path here? Could I still have Celiac or is it likely "just" gluten intolerance. I have everything from pain to fatigue, coordination and neuro problems,depression, GI symptoms from eating gluten (that are still not resolved but better) and possibly other food intolerance. Will the GI doc be able to test for other food intolerances?

It doesn't matter whether it's celiac or gluten intolerance. Gluten intolerance can make you every bit as sick as celiac. Some researchers believe it's the same thing, with the gluten intolerance simply an early phase of celiac disease where it doesn't show up on tests. A GOOD doctor will look at the symptoms that resolve when you go off gluten and take you seriously from there. I've been under the care of three different family practice doctors now, none of whom was inclined to have me gluten challenge for a "diagnosis".

You can ask for an IgG panel for food intolerances. Then you would remove them from your diet to see it if helps. The biggies for celiacs are soy and dairy, so try those without even worrying about talking to your doctor. Just go off them and see if it helps.

[VitaminDGirl]

Hi! I had similar blood results. i.e. negative for the celiac bloodwork, low iron anemia, deficient Vit. D and many of the symptoms you mentioned. Getting my D levels up helped with some of my neurological issues and can really affect your mood (depression) so def. work on that. I took 10,000 ius a day for several weeks of D3 (a quality D3, not a supermarket D3) plus got sun and got hte numbers up.

I'm taking iron supplements over the counter.

I am headed in for an endoscopy next Wed., even though the GI went to is not suspect that I have celiac. So your dr. might not be pushy. I'm glad he is willing though.

I did have a gluten intolerant positive saliva test to throw in the mix, so that's my extra encouragement to just get the biopsy over and done!

I will be curious to learn if you or myself have celiac with these similar symptoms.

[

quote name='gfForLife' date='08 October 2010 - 06:05 AM' timestamp='1286539524' post='644755']

Thank You for all the information. Good to know that the Gastro can check for enzymes nad other possible causes. I've had such bad experiences with doctors I think he'll just want to to do the endoscopy and if I haven't been eating gluten/don't want to then he won't want to bother doing anything else. Yes, this is how I think of doctors. Maybe I'll have better luck.

? I know the gastro will be covered fully though.

Dixiebell- I'll try taking that much D, that sounds like a good point to start at. I was taking I guess 25,000 max per week so 50,000 sounds good.

Maybe I'll end up getting an endoscopy anyway. If there's more they can check for that's good to know!. I did take antacids for heartburn for years so there may be damage from that. I don't need those anymore, it was the darn gluten causing heartburn all along

Thanks again!

[gfForLife]

It doesn't matter whether it's celiac or gluten intolerance. Gluten intolerance can make you every bit as sick as celiac. Some researchers believe it's the same thing, with the gluten intolerance simply an early phase of celiac disease where it doesn't show up on tests. A GOOD doctor will look at the symptoms that resolve when you go off gluten and take you seriously from there. I've been under the care of three different family practice doctors now, none of whom was inclined to have me gluten challenge for a "diagnosis".

You can ask for an IgG panel for food intolerances. Then you would remove them from your diet to see it if helps. The biggies for celiacs are soy and dairy, so try those without even worrying about talking to your doctor. Just go off them and see if it helps.

I guess I didn't know that gluten intolerance can cause malabsorbtion just like Celiac but it makes sense. All of my life I have tried to eat nutritionally dense foods and get vegetables, meats, fish, etc... because I have always felt so crappy, always had off and on GI symptoms and tiredness and I figured I was eating wrong but all along it had nothing to do with that. I was not absorbing key nutrients for my health and no matter what I've just kept getting sicker every year until I got pregnant with twins that sucked the life out of me basically . Whatever nutrition stores I had were taken (thankfully) by them and all of my symptoms were 100X worse after my pregnancy plus a whole list of new symptoms like the chronic pain and brain fog. That was 2.5 years ago. I feel like I have barely been living ever since and I haven't been able to enjoy my children as much as I should. I'm just too tired. They also have syptoms of nutritional deficiencies and gluten intolerance and have some GI symptoms. They're off gluten as well now.

I do need to find a good doctor that will just work under the assuption that I have Celiac and treat me as such. I'm just waiting to meet w/ the Gastro and see if he will be helpful. And, I do want to get Igg food intolerance testing. I definitely have GI symptoms from eating too much soy or soy in processed foods and sometimes I get facial flushing when eating it. Dairy may also be a problem. I've had asthma since I was 11

Thanks for listening and replying! I am just so desperate to get all the answers I need and I know everyone here can relate

[VitaminDGirl]

Hi. Again. I think we posted at the same time, so hopefully you will see my post before your reply to Skylark.

anyways, not sure how much researh you've done on the role of Vit. D in a body, but it sythesizes itself into a hormone and can cause all kinds of issues that may show themselveds resolved after you get it to the level your body needs. Which for most is usually 70-90 unlike your lab result sheet probably says.

I appeared to have hypothyroid issues, for example, but when D went up those test results came back fine.

In fact because D can affect so many things, I put off taking prescription meds for nerves and thyroid--didn't accept them (still haven't)... but waited for D to go up. My dr. didn't tell me to wait, but based on my own research I did, it appeared to be the smartest thing to do.

Thanks for listening. Hope you get good results with your D3.

[gfForLife]

Hi. Again. I think we posted at the same time, so hopefully you will see my post before your reply to Skylark.

anyways, not sure how much researh you've done on the role of Vit. D in a body, but it sythesizes itself into a hormone and can cause all kinds of issues that may show themselveds resolved after you get it to the level your body needs. Which for most is usually 70-90 unlike your lab result sheet probably says.

I appeared to have hypothyroid issues, for example, but when D went up those test results came back fine.

In fact because D can affect so many things, I put off taking prescription meds for nerves and thyroid--didn't accept them (still haven't)... but waited for D to go up. My dr. didn't tell me to wait, but based on my own research I did, it appeared to be the smartest thing to do.

Thanks for listening. Hope you get good results with your D3.

I do wonder just how many of my symptoms are caused by the low vitamin D and Iron. I know vitamin D is so important. I was supplementing before I even started trying elimination diets to see if it would help and it hasn't but clearly I'm not absorbing it well, or at all. I'm starting on 10,000 IU a day now in liquid capsule D3 form. I wonder if I should take even more. I am really interested in what the gastro will tell me about why I'm not absorbing this. I do truly believe I have hypothyroid problems. My TSH was 2.4 which I think is high and I can't convince my doctor to do tests like Free T3 and T4, TPO or anything. I will get those tested with a new doctor I guess. I have every single symptom of hypo when I look at the symptom lists I can just check them all off. Dry hair, nails, brain fog, trouble concentrating, memory problems, anemia, etc.. I have them all.

Anyway, how long did you have to take more vitamin D to get your levels up. I've been taking a lot for 7 months now! It seems like I've given it a lot of time at pretty good doses but maybe not?

Also, are you eating gluten still for the endoscopy? I'm not eating it anymore. I don't know when I will be able to get into the Gastro but I figure even if it's a few weeks into gluten free if there was villi damage it's not going to just be miraculously all better after such a short time, what do you think?

[ravenwoodglass]

I'm not eating it anymore. I don't know when I will be able to get into the Gastro but I figure even if it's a few weeks into gluten free if there was villi damage it's not going to just be miraculously all better after such a short time, what do you think?

The villi actually regrow at a fairly quick rate gluten free. If you want a biopsy to have any chance of an accurate result keep eating gluten. If gluten makes you feel too ill to continue with the challenge then you already IMHO have the answer.

[sb2178]

Oh, and sometimes the neuro folk (see "brain fog") only carry the antigliadin antibodies in their blood. DGP is a newer "version" of that test, but I haven't read anything about neuro celiac and the use of DGP.

[VitaminDGirl]

I do wonder just how many of my symptoms are caused by the low vitamin D and Iron. I know vitamin D is so important. I was supplementing before I even started trying elimination diets to see if it would help and it hasn't but clearly I'm not absorbing it well, or at all. I'm starting on 10,000 IU a day now in liquid capsule D3 form. I wonder if I should take even more. I am really interested in what the gastro will tell me about why I'm not absorbing this. I do truly believe I have hypothyroid problems. My TSH was 2.4 which I think is high and I can't convince my doctor to do tests like Free T3 and T4, TPO or anything. I will get those tested with a new doctor I guess. I have every single symptom of hypo when I look at the symptom lists I can just check them all off. Dry hair, nails, brain fog, trouble concentrating, memory problems, anemia, etc.. I have them all.

Anyway, how long did you have to take more vitamin D to get your levels up. I've been taking a lot for 7 months now! It seems like I've given it a lot of time at pretty good doses but maybe not?

Also, are you eating gluten still for the endoscopy? I'm not eating it anymore. I don't know when I will be able to get into the Gastro but I figure even if it's a few weeks into gluten free if there was villi damage it's not going to just be miraculously all better after such a short time, what do you think?

For me it took about 8 weeks of a 10,000 iu supplement. I use a brand called "pure" through my dr. He said he's had people try other brands and not get their D up, but that this brand works. Not sure of the validity of his statement, but it helped me, thank God. I got my D levels checked after 2 months.

Thyroid cannot work properly without the right D levels--think 'hormone related'.

Yes, I'm still eating gluten for the endoscopy.

[VitaminDGirl]

I do wonder just how many of my symptoms are caused by the low vitamin D and Iron. I know vitamin D is so important. I was supplementing before I even started trying elimination diets to see if it would help and it hasn't but clearly I'm not absorbing it well, or at all. I'm starting on 10,000 IU a day now in liquid capsule D3 form. I wonder if I should take even more. I am really interested in what the gastro will tell me about why I'm not absorbing this. I do truly believe I have hypothyroid problems. My TSH was 2.4 which I think is high and I can't convince my doctor to do tests like Free T3 and T4, TPO or anything. I will get those tested with a new doctor I guess. I have every single symptom of hypo when I look at the symptom lists I can just check them all off. Dry hair, nails, brain fog, trouble concentrating, memory problems, anemia, etc.. I have them all.

Anyway, how long did you have to take more vitamin D to get your levels up. I've been taking a lot for 7 months now! It seems like I've given it a lot of time at pretty good doses but maybe not?

Also, are you eating gluten still for the endoscopy? I'm not eating it anymore. I don't know when I will be able to get into the Gastro but I figure even if it's a few weeks into gluten free if there was villi damage it's not going to just be miraculously all better after such a short time, what do you think?

ps Vit. D gets maintained at different levels for different people of supplementation. If you go up to 10,000 ius a day...be sure to get your levels checkd again after 8 weeks. Then you may have to maintain anywhere from 5,00o-7,000 iu's a day. The FDA's 400 iu or whatever it is, is bogus. I took that for years and became deficient!

[VitaminDGirl]

ps Vit. D gets maintained at different levels for different people of supplementation. If you go up to 10,000 ius a day...be sure to get your levels checkd again after 8 weeks. Then you may have to maintain anywhere from 5,00o-7,000 iu's a day. The FDA's 400 iu or whatever it is, is bogus. I took that for years and became deficient!

sorry to keep on...my levels went from like 13 to 97 in that time. Then they came back down to the 70s when I went down to 5,000 or so ius a day. So I'm back up again on my ius.

[gfForLife]

The villi actually regrow at a fairly quick rate gluten free. If you want a biopsy to have any chance of an accurate result keep eating gluten. If gluten makes you feel too ill to continue with the challenge then you already IMHO have the answer.

well, that's good to know. And, yes. For me I know I already have an answer. If that's the case and my doctor wants to do an endsoscopy just to test for Celiac then I don't know. I absolutely would never touch gluten again for anything after how sick it made me this last time around so maybe they will find something, maybe not. I've read a lot of people on here say it took a long time for their villi to heal so I guess I'll see if I decide to do it.

Oh, and sometimes the neuro folk (see "brain fog") only carry the antigliadin antibodies in their blood. DGP is a newer "version" of that test, but I haven't read anything about neuro celiac and the use of DGP.

Yeah, my doc wouldn't run the anti-gliadin or any Iga tests either, only Igg so as not to waste money I guess. She even said that the insurance might not cover the DGP. I told her I don't care, I'll pay out of pocket so I'm anxious to see the results of that. From what I've read today it has a better ability to detect Celiacs after they've been gluten free for a while.

sorry to keep on...my levels went from like 13 to 97 in that time. Then they came back down to the 70s when I went down to 5,000 or so ius a day. So I'm back up again on my ius.

Wow, I'm glad to hear it can come up that fast. In the last 7 months I would have thought I would have atleast came out of the deficient range with all the D I've been taking. Maybe I do have damaged villi that aren't recovering so well

I really appreciate all the replies. This gives me a little hope that maybe, someday soon I will start to feel alive again. Not today however, lol.

[gfForLife]

For me it took about 8 weeks of a 10,000 iu supplement. I use a brand called "pure" through my dr. He said he's had people try other brands and not get their D up, but that this brand works. Not sure of the validity of his statement, but it helped me, thank God. I got my D levels checked after 2 months.

Thyroid cannot work properly without the right D levels--think 'hormone related'.

Yes, I'm still eating gluten for the endoscopy.

Oh, that reminds me I've heard the Carlson's D drops work really well but I'll look into that brand too and see which is cheaper. At this amount I'll be out of the one's I have really soon. I hope you're right and my thyroid problems are just from low D causing it to not work right. My mom has autoimmune thyroid disease so that's something for me to look into once I can get a better GP or a referral to an endocrinologist

[VitaminDGirl]

Oh, that reminds me I've heard the Carlson's D drops work really well but I'll look into that brand too and see which is cheaper. At this amount I'll be out of the one's I have really soon. I hope you're right and my thyroid problems are just from low D causing it to not work right. My mom has autoimmune thyroid disease so that's something for me to look into once I can get a better GP or a referral to an endocrinologist

In general, most people are walking around with lower D levels than they could/should. Mostly because of sunscreen, staying out of the sun,etc...

So it's a good starting place

But def. consider your own personal case and your herditary history.

I've been ruled out for autoimmune, so I didn't have that factor to think about.

God bless you as you try and figure things out!

Here's to feeling better real soon!

[gf-soph]

I guess I didn't know that gluten intolerance can cause malabsorbtion just like Celiac but it makes sense. All of my life I have tried to eat nutritionally dense foods and get vegetables, meats, fish, etc... because I have always felt so crappy, always had off and on GI symptoms and tiredness and I figured I was eating wrong but all along it had nothing to do with that. I was not absorbing key nutrients for my health and no matter what I've just kept getting sicker every year until I got pregnant with twins that sucked the life out of me basically . Whatever nutrition stores I had were taken (thankfully) by them and all of my symptoms were 100X worse after my pregnancy plus a whole list of new symptoms like the chronic pain and brain fog. That was 2.5 years ago. I feel like I have barely been living ever since and I haven't been able to enjoy my children as much as I should. I'm just too tired. They also have syptoms of nutritional deficiencies and gluten intolerance and have some GI symptoms. They're off gluten as well now.

I don't know the mechanism, but i am gluten intolerant and have a definite malabsorption problem even 2 years gluten free. I am having both iron and b12 injections as no matter what I do I just can't absorb them. I am also right at the bottom of the range for vit D despite living in Australia. I have also developed other food intolerances over time that I didn't have prior to an illness triggering my gluten intolerance. It may be that I would have ended up with a positive biopsy over time, or maybe not, but either way gluten is a poison that has severely damaged my digestion and general health.

It sounds like you are heading in the right direction. It may be that the gastro is useless, but you won't know if you don't try. I would really push for at least a b12 test on top of the iron and d that you've already had. Low B12 can make you seriously ill and can cause permanent damage in severe cases, and I think you have a good chance of being deficient. Hope you are feeling better soon.