Blood Test Results Came Back Negative? Mother Isn't Being Helpful

[supersquatchy]

Hi! 

 

I'm totally new here, in fact, I haven't even been diagnosed with having Celiac... yet. I went to the doctors and got a blood test yesterday, I think she ordered tests for my thyroid, something else, and Celiac.

 

My history could possibly explain everything... I hope nobody minds reading a wall of text! I could just really use some advice and guidance because I feel pretty hopeless about my situation right now.

 

So lets just start from the beginning. As a child I was always extremely healthy. Sometimes I would even fake sick so I could stay home from school because all my friends got to miss a day or two for being sick. The first real health issue I had was when I found out that I was severely allergic to tree nuts at age 11 (and more recently I've been diagnosed with a peanut allergy as well). Other than that my health was superb. I had always had keratosis pilaris on my arms.. and on my face when I was younger if that means anything..

 

At the end of freshman year of high school in 2011 my life was completely turned upside down. I contracted Mono during spring sports tryouts from sipping out of the wrong water bottle. It really hit me hard.. I probably had it for a month before I even got diagnosed.. I only went to the doctor once I collapsed. I was very very sick, sleeping nearly 24/7 and barely able to eat for probably three months. Though, it took me over a year and a half to actually make a recovery from all of it. During that time I had severe severe migraines on a daily basis, I would ALWAYS get sick, constantly, and I was also diagnosed with chronic fatigue syndrome during that time and had to go through physical therapy for it. After a lot of work and patience I regained a reasonable amount of health, but I was never what I was before having mono.

 

All of this time I had been out of school, trying to struggle through on online high school but sometimes I was even too sick to do that. When I would get sick I would feel sick to my stomach, get headaches, and just feel like I was in a fog, unable to think about anything let alone school. In the fall of 2012 I decided that I wanted to go back to high school. I made it through the first three weeks.. getting sick just about every week.. until I finally contracted viral meningitis and after that whole ordeal we just decided to pull me out of school all together and home school me. The migraines that has subsided started up again after having had viral meningitis. They were brutal, at one point I had one that lasted 11 days and I was hospitalized multiple times. I was put on Topamax after that whole ordeal AND had regular acupuncture. My migraines started to subside.. which made me feel better and in turn.. eat even healthier. I've always  been a vegetarian first of all... I ate better than most people bit not clean. Since I was feeling well I started eating clean, which also meant that I was eating a lot less bread, in addition I exercised daily. I was feeling great, no migraines, only the occasional stomach pains, no migraines. I was even able to stop taking the Topamax and my migraines stayed away.

 

So I've been pretty healthy up until this winter. Around christmas season I started to slack with how healthy I was eating and I haven't really gone back. I've been eating more bread and cheese than I normally would. Before I was eating a lot of veggies, quinoa, brown rice, beans, etc. I began having those sick days where my stomach would just hurt, I would be in a fog, and all I would want to do is lie around. 

 

It all really went downhill four weeks ago when I injured my knee while skiing. As a homeschooler I have the freedom to be extremely athletic and would ski 3 to 5 times a week for 10 hour days sometimes. It was a freak accident that put me on crutches. I tore my lateral meniscus and I have a micro fracture on my tibial plateau if that's even relevant. Since I was sitting around and sort of bummed out I ate a lot more breaded products as opposed to healthy things. A few days after the injury I got a strange "virus" where my stomach started to gurgle a lot and I was burping like every 30 or even 15 seconds. I assumed it was a virus because it came on in a fairly short period of time.. but it hasn't gone away. It got a little better at one point but now it's gotten worse. I've also been getting migraines again, I've been in a brain fog, I've felt incredibly tired, and I just haven't been doing well.. and it's certainly not due to my knee.. which is doing a little better.. no crutches anymore. The keratosis has spread down to my forearms. I've been getting hives on occasion in random places for random reasons. I've been extremely bloated and uncomfortable.. but I've always bloated a lot after eating very little. The burping and stomach/intestine pain is ridiculous, I literally cannot stop burping. It's SORT of voluntary because I have to let the air out.. It's air.. or gas.. but it isn't acid.. at least not very much. Each morning I was getting up, eating some sort of bread product for breakfast in conjunction with some fruit or something.. then an hour later I would be knocked flat with a wave of tiredness and a brain fog and I would have to go back to bed.

 

I went to the doctor's yesterday and she felt my stomach.. there's nothing wrong with my gal bladder or anything. She took blood for thyroid, something else, and Celiac disease. She said that it would take 4 to 7 days for the results to show but she actually just called saying that the results were in.. but my mom didn't pick up the phone. She also scheduled me for a lactose breath test for next week.

 

Just some other things about me...

I'm 17 years old, 5'2" and 105lbs. I've always been thin and small. I'm shorter than both my parents, though they're both pretty short to begin with. I won't be getting any taller. 

I haven't been diagnosed with endometriosis but I'm pretty sure that I have it... my periods are awful and have always been extremely heavy and painful. Today was the worst I've ever had it, I literally screamed in pain for two hours.. and I wasn't being dramatic. I heard endometriosis is sometimes associated with Celiac.

My hair has also been falling out A LOT lately. I've had extremely thick hair my whole life.. and it has thinned out considerably in the past few months. It isn't one spot.. it's just all over. 

In addition to all of this I have about a zillion food allergies and I carry an epipen. I'm allergic to all nuts, oats, peaches, celery.. and probably other things that I haven't been tested for yet. It wouldn't be surprising to find that I have a problem with gluten too... and probably dairy in addition to that. 

Nobody in my family has been diagnosed with Celiac (except for maybe one or two of my first cousins who have a lot of health issues but I don't know).. there are some family members that I suspect could possibly have it.. but there are no confirmed cases.

 

I almost want to be diagnosed with this.. not that it would make my life any easier.. it would actually suck a lot.. but it would at least be the answer to why I've been feeling this way for SO long. Two days ago I stopped eating gluten and less dairy... I've improved a little bit.. I've had ups and downs and I'm still burping and my stomach still hurts from everything that it has been through but it isn't as bad as it was the other day.

 

 

 

I apologize for the whole novel.. I would really appreciate it if I could get some answers. I'm just so frustrated and just want an answer.. Judging by what I've read.. this seems like this could be what has been causing all my ailments for the past couple years. Does this sound like Celiac or a gluten intolerance? Even though my doctor said that we wouldn't have the results for 4 to 7 days (she didn't say which test) and she just called in with them a second ago (a little over 24 hours after having my blood drawn)?

[Mooserella]

So Sorry too hear about your long struggle. It is very good your doctor is checking thyroid. I have Hashimoto's thyroid and always know when they need to bump up my meds because I get diffuse hair loss and extremely tired. Your intense sickness with mono or any severe illness like the meningitis, could have triggered an autoimmune disease. I have seen it many times in my field where some infections in some people can cause things to happen. I have been battling my own ailments for over two years and am having a biopsy Friday. I have had to eat gluten containing products for several weeks now and cannot wait to get the crappy bread, processed products out of my life. I too battle the headaches, GI, and other neurological sensations (numbness, brain fog, memory loss, etc). I believe you have noticed you feel better off the gluten and possibly other triggers like dairy, etc. do yourself a favor and eliminate any suspect foods you think are culprits. I have heard of people needing upwards of 22 months to heal some of the way. As far as Celiacs, yes it could be one of your problems but even having a non-Celiac sensitivity can wreak havoc on you. Have you been to an Endocrinologist or Rheumatologist? These may be the next Drs you really should see, especially if you are suspecting auto-immune. If you like/trust your family Dr., great but your case sounds like you need to be consulting with specialists.

[1desperateladysaved]

YES, Mono can be the trigger for celiac symptoms to begin.  I had mono when I in college at age 19.  I went on for years with extreme fatigue, foggy mind, and bloating. I remember hearing that "She just was never the same after mono."  Nobody wants celiac and the changes it brings, but to know what to do in the struggle is a real blessing.  I also know the joy of recovering from the experience.  I no longer carry the extra burdens of fatigue and foggy mind.  I hope you will soon be able to say the same thing.

 

Hang on to finish testing.  Keep eating healthy foods.  Keep us up to date on your diagnosis if you can.

 

D

[GFinDC]

Hi SuperS,

 

Yes, your symptoms could be celiac disease related.  You should not stop eating gluten yet though.  Your  doctor didn't tell you to do that did they?  The usual test process is the blood antibodies first, and then an endoscopy to get biopsy samples.  Celiac disease causes villi blunting in the small intestine, and they look at the biopsy samples with a microscope to check for that.

 

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/
 

 

[supersquatchy]

Oh my goodness thank you for the responses!! 

My thyroid results came in today and they're perfectly normal... The other test.. I suppose it was for vitamin levels.. came back showing that my vitamin D levels are pretty low.. I'm not sure of the exact numbers because my mother was the one who answered the phone. My doctor instructed me to take vitamin D pills once a day I believe? I'm not next to the bottle right now but I think that it was a pretty high dose of vitamin D from what I remember.

I should have the results for my celiac test tomorrow or the next day. I'm not sure if she ran the full celiac panel on me or not.. I'm a baby so I didn't look at how many vials they were filling.. I believe it was 3 though. If it was only three vials and she was testing my thyroid, vitamin levels, and celiac.. would it only be one specific celiac test? I know there are many.. there's like a whole panel of blood tests that can be done for it. If this one comes back negative should I request to have all the celiac blood tests done? As for gluten intolerance.. would that show up on this test if it was specifically for celiac? She wasn't very clear with everything and I forgot to ask more about it.

 

As for eating gluten free.. she said that I should avoid both dairy and gluten to see if it will make me feel any better.. I've only been eating gluten free and only some dairy for three days now. I still feel pretty ill but there's SOME improvement. My stomach doesn't feel like a carbonated beverage anymore (which by the way I don't drink and haven't had in two years so that isn't what's causing this). I think that it will take a LONG time for gluten to completely clear my system because of how much I always ate.. plus nobody in my household is being super carful about it yet (still using the same toaster, etc.) because we don't know the verdict. If tomorrow or the next day the results come back positive and she orders and endoscopy I can just start eating gluten again until the test.

 

Are low vitamin D levels a sign of celiac? Could that be why I sustained a small fracture of my tibial plateau from such a minor fall?

 

I'm pretty convinced that I have a gluten issue.. Since mono, my symptoms have been so random and all over the place. They never really tied into anything specific.. until now. I would always get "sick" for a day or two.. my stomach would just hurt and I wouldn't want to eat and I would just be really tired.. it felt like I had a stomach bug. This would happen about once a week with no explanation.. I hadn't been around anyone who was sick. Looking at my extensive health history... it really ties it all together. Of course having a gluten issue is going to be a huge huge huge huge drag especially since I already have so many other food allergies..... but honestly... it would be really nice to have an answer to why I've been so ill for so long.

[supersquatchy]

So the results just came in today. Negative. To be honest.. I'm really surprised. I was almost convinced that they would be positive. I'm honestly really frustrated because I was sure that this was the answer. It was the celiac test that came back negative, the gluten intolerance results haven't come in yet though, my doctor said that they should next week. So I don't know if she's going to order an endoscopy or not.

 

Isn't it common for celiac tests to come back negative even if you have it? Could avoiding gluten for only 2 days before the blood test actually make the results more likely to be negative?

 

I've started feeling a lot better after taking gluten out of my diet. I still don't feel 100% but my stomach has stopped gurgling and I only burped a few times today. I woke up with a headache this morning and I felt pretty crappy yesterday but I've had ups and downs.. more ups than downs now. I've also still been eating dairy.. I have butter in the morning and I've eating various puddings (gluten free of course) and I haven't had a problem. Maybe I'm a little lactose intolerant, who knows, but I highly doubt that it was causing the problem.

 

I'm the only one who has done any research about the whole gluten/celiac thing. My mother won't. If I insist on more testing she's going to act weird about it or refuse to let me get it done. This is because her brother's girlfriend is a completely insane hypochondriac who spends all day googling strange ailments, becomes convinced that she has them, and then talks about it non-stop. So my mother has an aversion to looking up medical things on the internet.. which kind of annoys me because I've done all the explaining to her and she still doesn't get it. I mean.. everything I've experienced matches up with celiac or a gluten issue, and again, I still haven't gotten the results for the intolerance.. but if both come back negative I'm going to be suspicious. This is all just so frustrating. Is it possible that the test gave a false negative? Should I pursue more testing or is that ridiculous?

[GottaSki]

Be sure to request written or electronic copies of all your tests.  If you need help interpreting results,  feel free post them here.

 

If all antibody tests are negative and your doctor is not going to order an endoscopy, do remove all gluten for at least three months (six is better). Complete elimination is the only test for Non-Celiac Gluten Sensitivity which shares many of the symptoms of Celiac Disease.

 

Edited to add:  just reread your post....you need to keep gluten in your diet until you are certain testing is complete...including endoscopy.

[supersquatchy]

I know that there are a million posts like this, I hope it's okay that I'm adding yet another post of this nature.

 

I detailed my history in a different post.. I'll just sort of summarize here. First of all, I'm 17. I had perfect health until I came down with an extremely bad case of mono in the spring of 2011. I believe this is what triggered whatever it is that's wrong with me. I was in poor condition for a while. The worst ailment was horrible migraines nearly on a daily basis. I took medication and received acupuncture for them and the eventually resolved.. which made me feel a lot better and I began to life a healthier lifestyle because a felt well enough to. This involved eating a lot healthier which subsequently meant that I ate less wheat. Me symptoms resided greatly and I no longer had migraines. I attributed it to the acupuncture but now that I think about it.. it was probably due to my change in diet. 

 

I started eating less healthy around christmas (still healthy for most people) and never resumed eating as healthy as I did. In the past month I've been eating a LOT more wheat than I had before.. I started feeling awful. These were my symptoms, they began gradually:

 

+ Migraines - Every day or two

 

+ Extreme stomach gurgling accompanied by constant burping

 

+ Fatigue

 

+ Brain fog

 

+ Unable to focus

 

+ Slight nausea

 

+ Constipation

 

+ EXTREMELY painful period. I've always had periods from hell but this was on a whole new level. I literally lay on my bed screaming  and writhing and nothing cold relieve the absolute agony. 

 

+ Hair loss - all over

 

+ Keratosis Pilaris - Now, I've had this my whole life, on the backs of my arms, but now it has spread down to my forearms.

 

+ Slight nausea but no vomiting, I barely ever vomit though.. I haven't in 2 years

 

+ Hives - I have many other food allergies but I wasn't eating any known allergen.. They were just random.

 

 

SO.. I went to my doctor on Monday. She tested for vitamin D levels, thyroid, celiac, and gluten intolerance. Thyroid came back fine, apparently my vitamin D levels are really low because she told me to take some pretty strong vitamin D caplets... I don't know the levels for any of these, my mother took the phone call. Now, the celiac test came back today.. negative. I'm honestly very surprised... The gluten intolerance test won't come back until next week.. so there's still that.. But I'm not convinced that I don't have celiac yet. My mother is convinced though because she doesn't know anything about any of this. I've done all the research. She has an aversion to researching medical issues online because her brother has a crazy hypochondriac girlfriend who does nothing but that all day long. This really frustrates me though because I've had to explain extensive amounts of things to her and she still doesn't get most of it. I don't know if my doctor will order an endoscopy or not.. I won't know until next week when the final test comes back.. but if she doesn't.. I want more testing, especially if the gluten intolerance test comes back negative... What will wind up happening though is my mother will treat my like a hypochondriac and probably refuse to let me have the tests done.. and I wouldn't be surprised if my doctor made it difficult too because she honestly isn't that great.. we've thought about finding me a different doctor multiple times.

 

I stopped eating gluten two days before I had my blood drawn.. to see if that would relieve my symptoms. It began to. I asked if it was bad that I hadn't eaten any gluten before these tests and my doctor said no. It was only two days. She told me to stay on a gluten free diet to see if it helped anything.. it's starting to. Slowly but surely I'm feeling a bit better. But could that have affected the test results? Don't a lot of people get negative blood test results but positive biopsy results?

 

I seriously think that this is the answer. All the pieces fall together and it makes total sense. I always used to get sick and be down for a few days at a time.. It was always stomach pain/nausea, fatigue, and brain fog. 

 

How on earth am I supposed to get my mother to understand where I'm coming from with this? I don't want to seem obsessed and obnoxious about this. I'm not. I'm just pretty sure that I've found the answer as to why I've been sick for SO long. My mom doesn't understand anything, she thinks that a blood test means something is written in stone and something is completely plain as day. She doesn't understand that a test can give a false negative or positive. I want her to be on the same page as me but this is one thing that's hard to get her to actually look into herself. However, I also don't want to be demanding a bunch of tests and have them come up negative... I'm just at a real loss here. Again, the intolerance test hasn't come back yet.. so...

 

I'm just kind of lost and frustrated though. There's obviously SOMETHING up with me and it's just getting ridiculous. I want answers. Where am I supposed to go from here? How can I get my mom to understand that tests can be incorrect? How can I get my mom to even help try to figure out what's wrong with me? I'm sick of feeling this way.. plus I want to be able to go to college! I'm already a year behind because of all these health issues.

 

 

[supersquatchy]

Should I? I've been starting to feel a little better not eating it... I was getting so sick it was to the point where I basically missed a month of school. I'm actually home schooled... (I think I stated that above?) because of all of this... because of all my health issues... so it isn't a HUGE issue that I missed that much school but its still a problem. Should I really be eating a gluten saturated diet? My doctor was the one who said to continue what I'm doing... so does that mean she doesn't really know what she's doing? Should I seek a different doctor?

 

Additionally.. the phone number that the office has is my mother's, which is frustrating because 1. It's my health and I'd like to be the one to hear about it first and 2. she doesn't know to do things like request electronic documents. Is it too late to ask? 

[GottaSki]

I merged your posts to one thread, one is enough and keeps it a bit easier for members to answer you.

[GottaSki]

You do not need a gluten saturated diet.  One or two slices of glutenous bread daily is sufficient until you, your parents and doctors decide if endoscopic biopsy is the next step.  If no endoscopy is ordered, then it is time to remove all gluten for at least three months.

[1desperateladysaved]

Did you have a full panel thyroid test?  I had just TSH tested and it was normal.  When I had the full panel we noticed that some of my numbers were borderline low when they should be in the middle of the range.

 

D

[124chicksinger]

I am new to the forum and the disease as well; undiagnosed.  All I know is new information I've read.  If a relative has a celiac diagnosis, your chances increase.  You said the celiac test came back negative -- was that the gene test or you don't know?  I don't know the difference in blood testing for celiac and gluten intolerance...I did not know there was a blood test for intolerance--someone else can answer you that and I would love to hear it.  The low vit. D seems common to gluten and/or celiac, as well as many of your other symptoms.  

 

Thank you also for listing keratosis pilaris; I had this for many years on my upper arms and never knew it had a name; I never questioned it just thought they were pores clogged with waxy sebum and I would squeeze them. When I was in my 20s I had many of these bumps.

 

So I don't have much to offer you by way of information but I can offer you my support as we both navigate the route to finding out what is wrong with us.  As to the biopsy being the gold standard, I don't care what my upcoming results state - I plan to go gluten free and don't know the blood results yet, and honestly don't know exactly what tests he ran.  Since you are and have been so good at eating the right foods, if you get no satisfaction from the blood tests, and your doc is not going to do a biopsy, go gluten free when your doctor is done with that route and track how you feel.  There had to be some reason your doctor told you to reduce gluten, even if it is experimental to see if your symptoms improve, so it sounds at least that your doctor is listening and supportive.

 

As to asking for your results, you are the patient and you can call and request them.  You can also speak to the doctor directly; that is your right so don't be scared.

[supersquatchy]

I'm starting to get really really frustrated with what's going on with me. I feel like NO one is being proactive about this. Since I'm 17, nothing I say is valid.. my mother is completely misinformed and isn't going looking for the right things. Whenever I suggest something she just treats me as if I'm being paranoid. I've been "gluten free" for a little over a week now. The reason I'm putting quotes around that is because I've still been having butter that is not labeled as gluten free.. still using the same toaster (I have no choice) etc. I'm sure that I'm having a microscopic intake of gluten. Finding what to eat is getting even harder because I have now been diagnosed as being allergic to corn! So.. corn, tree nuts, peanuts, oats, honey, peaches, pears, barley, and about a million other things. I still don't know if I'm lactose intolerant or not but there's a chance I am. I'm barely getting any protein because the protein powder I used to use isn't gluten free.. I can't find a bean brand that is both gluten free AND not processed with nuts.. Everything is just getting so hard to cope with.

 

These are my current symptoms:

 

- Stomach rumbling and burping, but not to the extent that it was when I first posted.

- Extreme fatigue, I need to take a nap everyday

- Constipation 

- bloating

- Brain fog, it literally feels like there's cotton stuffed in my head

- Pounding heart.. now I don't understand this.. I've always been able to feel my heart pound in my chest to some extent.. I have to fidget until I fall asleep because it's such a bizarre feeling.. but now it will start POUNDING.. fast.. whenever I do something that's totally moderate.. like slightly jog up the stairs (I always do this, always have, has never caused a rise in my heart rate).. even just getting out of my bed or getting out of a chair will cause my hart to begin POUNDING and pounding reasonably fast

- I'm getting headaches almost daily

- I'm unable to concentrate on anything.. I can't get school work done.. I can't even focus on drawing which is something that I WANT to do

- My period just lasted 9 days.. It usually lasts 6 to 7.. sometimes 8. It also started off with more pain than I have ever experienced

- Shortness of breath.. I just feel like I'm not getting enough air.

- The keritosis pilaris is on my legs as well as my arms

- Sometimes my hands will go numb and tingle when I'm just sitting around

 

I think that some of these symptoms are due to anemia. Back when I was recovering from mono and was diagnosed with chronic fatigue.. I was also anemic.. apparently that was solved though? I just mentioned anemia to my mother and she was just like "you don't have anemia"... and that was basically that. I'm starting to feel like I have zero support. My mother doesn't want to focus on this anymore because it's hard for her to deal with... but.. it's harder for me to deal with. I'm starting to feel a little hopeless about this. I want to feel better. I want to get things done. I'm the kind of person who hates to just stagnate and not get anything done. This is driving me nuts. I feel that my doctor also isn't really compliant about further testing. The celiac blood test was negative.. so that's basically that to both my doctor and my mother. Unfortunately my mother is their contact.. so I still haven't obtained any of the actual written results from the tests.. I do know that she didn't do the gene test though. I recall the only vitamin she mentioned testing was vitamin D.. which was low. 

 

I'm just SO fed up. I just want to feel better. I just want an answer as to WHY I'm feeling this way. I feel like it's impossible to make any more progress on this when my mother is a complete barrier. She doesn't want to hear about any of this anymore because she's sick of talking about health! I'm beyond sick of talking about it.. but I just want to find the answer! I believe that my doctor is also a problem to some extent... however.. to find a new doctor would take forever.. especially because my mother will take forever to do it. I suggested finding a gastro but my mom won't do that either! The only person I could see within the next week or so is my old acupuncturist.. who does actually have the power to convince my mother to actually do something.

 

I'm sorry this was so long. I'm just feeling so hopeless right now. Nothing is going right and I feel awful and my mother barely even believes me.

[Jennd121]

Newbie here I understand how you feel and I'm in a similar boat. I have been following a gluten free diet on and off for the last year or 2. My stomach issues subside but I have yet to rid myself of the fogginess in my head which is my biggest complaint. I follow the diet really well for a few months and then I get discouraged and depressed and gorge myself on every processed food I can find. Lol. Can you say set back?! I was just tested for celiac and it came out normal. GI said its a wheat intolerance and I should follow the celiac diet. Maybe I just haven't stuck to it long enough to see the fog lift.... I'm back on it now and plan to stick to it for AT LEAST 6 months if not more in hopes I can get my life back. You are not alone. I understand the unsupportive family members and them not wanting to hear about it. it sucks because you feel like you are alone. Just know there are others out there and we will support you the whole way. We will support each other. I am more doing paleo because I cut out processed foods, even organic gluten free grains/foods. I'd rather not chance it with ingredients I don't know or understand. Now that I have found this amazing forum I am really excited to learn more and see your progress! We can do this!!!!! Best wishes new friend