Negative Test Results, Case History, Thoughts?

[Thursdaysangel77]

Hello everyone, (Warning: Extremely Long Post!)
I am brand new to the forum and quite the confusing case. My not feeling well all began in late 2009 with extreme brain fog, mild tummy issues, mainly stomach burning and fatigue. I began breaking out in strange rashes off and on and seemed to be having peculiar reactions to food. At first I was so confused and caught off guard because I suddenly became Lactose Intolerant. I couldn't consume dairy without getting stomach cramps, gas and having to run to the bathroom. I seen a GI Dr. and was tested for Celiac back then (around the end of 2009) but it was negative and I have no idea what tests were run, the numbers or reference ranges that came of that test.

Dairy continued to make me sick every time I had it. I appeared to react to everything from Dairy to Doughnuts and for some reason all sweets were making me kind of sick, so I thought maybe it was a sugar problem. I went to an alternative doctor and he suggested I go on a Dairy Free and Gluten Free Diet. Which I did - and I felt a lot better but not 100%. I'll admit, at the time I really didn't know a whole lot about Gluten Free diets and I have no idea if I was totally Gluten Free or not, it was a long time ago and I was a newbie. I indulged in quite a bit of supposedly gluten-free processed foods and even still ate oatmeal until oatmeal seemed to also make me sick. Then I removed oatmeal from my diet and still haven't eaten that to this day, I am too worried about it making me sick again. After eating that way for probably 3-4 months I developed an intestinal blockage in February of 2010.

The ER Dr. said my intestine twisted shut on itself. I was referred for a Colonoscopy in March of 2010, they did an Endoscopy and Colonoscopy at the same time but were not looking for signs of Celiac specifically. The results were that I have a hiatal hernia and everything else appeared normal. (no biopsies were taken, as they were not looking for Celiac) I fell off the gluten-free Diet but remained Dairy Free almost entirely. I would occasionally consume a bit of dairy to make sure it still made me sick, which it did. So I ate pretty much everything but Dairy till mid 2011 where I went on a very strict, almost Grain Free (it allowed brown rice) - Nut Free, Sugar Free, Still Dairy Free Diet. And I felt really well eating that way because before going on that diet, it seemed like everything made me sick. A bowl of oatmeal, a tuna sandwich, you name it.

I had been diagnosed infertile with high likelihood of Endometriosis in 2011 - I had been trying to conceive for two years at that point, so my doctor told me I was infertile. Till 2012 (after 3 years of trying) when I became pregnant! I have no idea how I was able to conceive but I suspect it may have been the diet I was following that helped. And I ate that diet from Mid 2011 till August of 2012 where my 1st trimester pregnancy cravings got the best of me and I began eating pretty much anything. I didn't feel well after going off my diet but I assumed it was just pregnancy stuff. I also discovered that miraculously I was no longer lactose intolerant. Which pretty much brings us to now, I ate whatever I wanted during my pregnancy, had my healthy, perfect son 9 months ago and my health has been going even more down hill since then. I am suffering from Chronic Diarrhea, Nocturnal Diarrhea that wakes me from a dead sleep, not every night but increasing in frequency. I am going as much as 2-8 times a day, most days but not every day.

My Lactose intolerance seems to be coming back as I can only occasionally tolerate dairy now. This has been going on for several months and I am losing weight. I am Vitamin D. Deficient again but I was diagnosed Vitamin D Deficient back in 2010 as well, so that is no shock. Brain fog, fatigue, intestinal cramping, tummy pain and most recently Burning sensations, tingling and painful pins and needles in my feet and hands. Cold hands and feet, except when they are hot and burning. Still getting rashes off and on. Which prompted a B12 test that shows a huge decrease from 4 years ago but still good serum levels, no B12 Deficiency. I am having weight loss, unintended of course, my Dr. thinks it is most likely due to the Diarrhea. I have lost over 11 pounds in about 2 months despite having a pretty big appetite and having dessert after every meal and not trying to lose weight.

My Dr. ran an IgA test and a TTG-IgA test on January 10th 2014.
IgA     188     (Normal is 80-340)  So that is normal.
TTG-IgA     <1.2     (Normal is 0.0-3.9)  So that is normal too.

I am kind of at a loss, I seriously thought maybe Celiac was the answer for me, since so much seemed to fit. The Nocturnal Diarrhea, the weight loss, even the fact that I was able to go back to eating dairy after the special diet, I thought maybe that was from my Villi Healing and that now I am Lactose Intolerant again because my Villi are getting damaged again.. Even how I was able to conceive after being on my special diet for almost a year but who knows, I'm confused now... any suggestions?

There are quite a few Autoimmune Disorders in my family. I have a Sister with Lupus with Kidney Involvement, I have another Sister who has 2 AI's, she has Eosinophilic Esophagitis and Areata Alopecia. My Mother is also sick but hasn't gotten a diagnosis yet and I have a cousin with MS. I am sorry for the long post, thanks for taking the time to read this and any suggestions or comments would be greatly appreciated. Thanks so much!

~ Thursday

[nvsmom]

Your symptoms do fit with celiac disease, and possibly with hypothyroidism too (cold, tingling and rashes). While gluten-free, you feel better, are healthy enough to conceive, but when you eat gluten you become unwell, lose weight and have lactose intolerance... With a family history of celiac disease, I would guess celiac disease.

 

And low B12 is not always a symptom of celiac disease. My B12 actually exceeded the normal range when I was first diagnosed.

 

Were you eating gluten for two months prior to testing? It sounds like you were but I though I'd check. As you probably know, going gluten-free will cause celiac tests to show a false negative as time goes by.

 

It's a real shame that the doctors didn't run the other tests on you. Some celiacs are only positive in the IgG version of the tests, others only have positive DGP tests, and a minority have all negative blood tests but a positive endoscopic biopsy.  This is the full celiac panel:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum Iga

AGA IgA and AGA IgG (older and less reliable tests)

 

Could you get the tTG iGG and the DGP tests done? Have you considered the biopsy? More testing might be a good idea. Genetic testing could help too.

 

If testing is not an option, I would advise you to go back to gluten-free eating. You appear to have celiac disease or non-celiac gluten intolerance (NCGI), either way gluten is making you feel poorly.

 

You might want to get your little guy tested too. If his test is negative, repeat the testing every couple of years. Symptoms aren't always obvious, and with a family history of AI diseases, there is a chance he will get one.

 

Welcome to the board.  

[Thursdaysangel77]

Hello nvsmom,
Thank you for the insight. I really appreciate your reply! I have been eating gluten since roughly August of 2012 and the IgA and TTG-IgA tests were run 3 days ago on January 10th, 2014. I have had my TSH tested a couple times since 2009 because I have been feeling unwell for that long. They always come back within normal ranges and I have heard that's really common. I don't know why Doctors don't test for free t3/t4, etc. Probably the same reason why they think running one or two Celiac tests is effective. I do not have a family history of Celiac Disease but I have a family history of Autoimmune Disorders. My sister also has a Wheat Allergy. Also my sisters, my mother and I have only been getting sicker and sicker for a very long time. The symptoms of Celiac Disease seem to correlate a lot with all the various and random things going on with the four of us, but I am the only one of the four who has been tested for Celiac and of course that came back negative. I have been tested for a lot of things, Lupus, B12 Deficiency, Peripheral Neuropathy, H. Pylori, etc. All negative.

My Dr. is currently running a culture, ova & parasite, another H. Pylori and an occult blood test on me right now. If these come back negative I will request the full Celiac Panel. Thankfully, though not perfect, my doctor is somewhat open minded and at least mildly informed because he told me even before doing the IgA and TTG-IgA tests - that they may come back negative and that doesn't mean that I don't have Celiac Disease necessarily. So at least he is aware of false negatives and he is fairly open to me requesting tests. He told me a biopsy is the best test for Celiac Disease and has been contemplating sending me in for a Colonoscopy, so if he does send me in for a Colonoscopy, I'll request an Endoscopy and Biopsies at the same time. That way I don't have to be put under twice.  

Though I think my Dr. might be getting a little fed up with my "random" and "all over" symptoms... he doesn't know of anything that could cause all of my symptoms. I think the recent development of pins and needles, burning and tingling has really thrown him but I have read all over the place that Celiac Disease can cause that. He sent me in for an EMG but that showed no notable nerve damage. So he keeps talking about sending me to a "Tertiary Care Facility" a few hours from here, somewhere with more specialists and better tests and stuff. I don't know if he will actually do that, as it is... he isn't setting up another follow up with me... : (  Basically he would like to "wait and watch" all my symptoms. He said he'll contact me via phone with my results.

~ Thursday

[pricklypear1971]

You definitely need a full thyroid panel along with a full celiac panel. Incomplete testing is worse than no testing IMO, since it can leave you with the (perhaps false) impression you are negative.

I think what is must telling is you went into remission while pregnant. THAT is a strong hint there's autoimmune involvement....and your doctor probably knows that... I'dxtry to get complete autoimmune panels out if him: Celiac, thyroid (free t3, free t4, reverse t3, antibodies) and anything else you're curious about. Take those results anywhere you go (get copies).

I hope you get answers soon.

[NoGlutenCooties]

I agree with what others have posted and if it were me I would request the biopsy.  Make sure they take at least 5 or 6 of them.  Not only can this confirm the diagnosis, it can also rule out a few other more serious conditions.

[Thursdaysangel77]

pricklypear1971 - 
Thank you so much for your reply! It was like a light switch turned on when you said that I "Went Into Remission" - During pregnancy! I had no idea that AI's could cause remission during pregnancy, nor did I even make the connection that I could've been in remission. All I knew was that I felt incredible while I was pregnant, I had an amazing pregnancy and for the first time since I had gotten sick, I was able to gain weight! Eat dairy, eat anything I wanted actually... and not be sick at all. My insomnia was cured, my circadian rhythm immediately fixed itself, my depression vanished, so did my anxiety and panic attacks. I felt healthy and young, like a teenager again. I was upbeat and energetic. Being pregnant made me feel 20 years younger, lol... and that sounds silly since I am only 27 but I've felt more like 40 or 50 years old since 2009. I didn't even go through morning sickness really during my pregnancy, lol, I thought it was really odd that I had more nausea before I was pregnant. You are right, I should have a complete thyroid panel too and more seriously pursue the possibility that I do have an autoimmune disorder. I was thinking of giving up...

I know that all of you wonderful people on this board understand how hard and defeating it is when you're told for years that you're fine. My anxiety was such sudden onset I can tell you the exact month it developed, November of 2009. I seen one Physician's Assistant in 2010 who made me feel so bad...  He told me everything was in my head, caused by anxiety and to go on meds and go away. I stopped seeking answers for a long time after that.

But I know he is wrong. It's just hard to keep hearing "Everything is normal." - It's easier to just suffer in silence. pricklypear1971, if I went into remission during pregnancy, could I have immediately went out of remission within a few days of having the baby? I guess I am just wondering if that may have been why I got so sick and suffered so many complications after having my son. To be honest, if it weren't for how terrible things were after having my son, I'd have another... but it really was terrible. I swelled up about 5 times my normal size, I was so swollen and so much heavier than I was just 24 hours earlier, that I could hardly move, walk or lift my legs. I had to literally use my arms to pick up my legs and I could hardly get around or get out of bed or get to the bathroom... it was like a night mare. Otherwise, I'd totally have another but I'd like to figure out what is wrong with me and get it under control and treated first.

NoGlutenCooties - 
Thanks for the input, I'd like to go ahead with the biopsy and EGD since my doctor would like me to have another Colonoscopy. If he orders the Colonoscopy, I'll ask for an EGD and Biopsy too. I will definitely ask them to take at least 5 or 6 samples.  

Last night I was thinking about my sisters third child, he is only 14 and has had a lot of injuries, including two broken wrists (each wrist, not the just same one.) and a bunch of other stuff. Which occurred to me that could be a sign of Celiac as well. I was speaking to my mom last night and we were talking about how all four of us girls suffered from gastrointestinal issues first before any of our other symptoms or AI's or issues set in. I think it would be beneficial to request a more complete set of Celiac blood tests as well. I have seen quite a few board members who only show positive on the DGP-IgG test, so I am definitely going to ask for that and a few others. The abbreviated panel I received was only the Serum IgA and the TTG-IgA and I just don't think that is thorough. I am with so many of the posters on here, I cannot understand why doctors don't order full panels or do complete testing! It's a waste of time and money to do incomplete testing and brush everything off. I too have been told it's just anxiety and IBS and that otherwise I am perfectly healthy, my husband and I really beg to differ, I do not feel or seem healthy. I finally might have a decent doctor who will bare with me on this though.

~ Thursday 

[nvsmom]

Hello nvsmom,

Thank you for the insight. I really appreciate your reply! I have been eating gluten since roughly August of 2012 and the IgA and TTG-IgA tests were run 3 days ago on January 10th, 2014. I have had my TSH tested a couple times since 2009 because I have been feeling unwell for that long. They always come back within normal ranges and I have heard that's really common. I don't know why Doctors don't test for free t3/t4, etc. Probably the same reason why they think running one or two Celiac tests is effective. I do not have a family history of Celiac Disease but I have a family history of Autoimmune Disorders. My sister also has a Wheat Allergy. Also my sisters, my mother and I have only been getting sicker and sicker for a very long time. The symptoms of Celiac Disease seem to correlate a lot with all the various and random things going on with the four of us, but I am the only one of the four who has been tested for Celiac and of course that came back negative. I have been tested for a lot of things, Lupus, B12 Deficiency, Peripheral Neuropathy, H. Pylori, etc. All negative.

My Dr. is currently running a culture, ova & parasite, another H. Pylori and an occult blood test on me right now. If these come back negative I will request the full Celiac Panel. Thankfully, though not perfect, my doctor is somewhat open minded and at least mildly informed because he told me even before doing the IgA and TTG-IgA tests - that they may come back negative and that doesn't mean that I don't have Celiac Disease necessarily. So at least he is aware of false negatives and he is fairly open to me requesting tests. He told me a biopsy is the best test for Celiac Disease and has been contemplating sending me in for a Colonoscopy, so if he does send me in for a Colonoscopy, I'll request an Endoscopy and Biopsies at the same time. That way I don't have to be put under twice.  

Though I think my Dr. might be getting a little fed up with my "random" and "all over" symptoms... he doesn't know of anything that could cause all of my symptoms. I think the recent development of pins and needles, burning and tingling has really thrown him but I have read all over the place that Celiac Disease can cause that. He sent me in for an EMG but that showed no notable nerve damage. So he keeps talking about sending me to a "Tertiary Care Facility" a few hours from here, somewhere with more specialists and better tests and stuff. I don't know if he will actually do that, as it is... he isn't setting up another follow up with me... : (  Basically he would like to "wait and watch" all my symptoms. He said he'll contact me via phone with my results.

~ Thursday

 

I too thought I had Lupus, but it was lingering celiac disease symptoms and thyroiditis... at least that's what the rheumy says, and I have been better while gluten-free - mostly. Symptoms like joint pain, nerve problems and cognitive issues tend to be some of the slower symptoms to improve, so if you go gluten-free again, don't be surprised if symptoms linger for 6 months to a year. It can take a long time to heal.

 

AI diseases do go in remission. There are definite ups and downs. It varies from week to week, to good years and bad years.  After being gluten-free for over a year, I still have some ups and downs, but they are not nearly as extreme as they once were. KWIM?

 

Best wishes.

[1210donna]

I'm IgA deficient.  My IgA antibody test for celiac was negative. Didn't realise those with IgA deficiency (3-5% of people with celiac are IgA deficient) that a neg on the IgA test is generally a false negative.   I had been gluten-free for 9 years when I had the biopsy, again negative.  Nobody told me this too could have been a false negative as I'd have needed to be on gluten at the time.  Developed progressive peripheral neuropathy since being on gluten 2010-2013, neuro felt celiac was at work.  Significant improvement since returning to gluten-free. 

[1210donna]

if one is IgA deficient (and 3-5% of people with celiac are) then the IgA antibody test is not reliable.  Instead they test for Antigliadin antibodies which does not rely on IgA levels.

[icha]

I'm IgA deficient.  My IgA antibody test for celiac was negative. Didn't realise those with IgA deficiency (3-5% of people with celiac are IgA deficient) that a neg on the IgA test is generally a false negative.   I had been gluten-free for 9 years when I had the biopsy, again negative.  Nobody told me this too could have been a false negative as I'd have needed to be on gluten at the time.  Developed progressive peripheral neuropathy since being on gluten 2010-2013, neuro felt celiac was at work.  Significant improvement since returning to gluten-free. 

 

i am glad you said this because i also have an iga deficiency. when they tested me for gluten, they tested iga as well to confirm -- no iga, so negative blood test. i had a follow-up endoscopy but have been low-gluten (oatmeal only) for almost 20 years because pasta, breads, etc. taste like mold. endoscopy negative, gastro basically threw up her hands and said 'if you feel better when you don't eat bread, don't eat bread'

[Thursdaysangel77]

Update - All of the parasite, H. Pylori and other tests came back negative so my Doctor is sending me to a GI doctor for a colonoscopy, endoscopy and biopsies. Mainly it is to search for Celiac Disease but it is also to look and see if they can find anything else wrong, in case it isn't Celiac, though my Doctor seems to think it could likely be Celiac. The appointment is set up for February 17th, so around three weeks away. That is not the date of the procedures though... I think... I think it's just an initial appointment where I'll meet the GI and talk to him about what is going on, etc. Any advice or info I should know before this appointment?

~ Thursday