It's Official I Have Celiac

[ageofrockets]

I'll start off real quick with giving the numbers I received on my bloodwork done by Prometheus. Maybe some of you on here can help me decipher it in terms of how bad or not so bad the numbers are. I'll also add that i got the blood work done 3 days after the last day I ate gluten All my values came back positive at the top including DGP/IGG, DGP/IgA, TTG/IgA, EMA/IgA, IgA.

Deamidated Gliadin Peptide Antibody, IgG (DGP IgG): 65.0

Deamidated Gliadin Peptide Antibody, IgA (DGP IgA): 15.0

Anti-Human Tissue Transglutaminase IgA ELISA (TTG IgA) 64.0

Anti-Endomysial IgA IFA (EMA IgA): POSITIVE

Total serum IgA by Nephelometry (TOTAL IgA): 96 mg/dl

Ok so those are my numbers, Heres my journey from beginning to present.

About 5 and a half months ago, right before christmass I was ready to make a major change in my life. Im 25 btw. I was ready to make a huge leap off of multiple non-narcotic/narcotic medications I was on for ADD,sleep issues,and some minor dabbling in opiate abuse. Mind you the best way I thought to get off of these meds would be to do them all at the same time and without tapering. All the while getting back into shape and exercising again. That also included eating more healthy but will get back to that in a moment. Well, needless to say it put my body through hell, with lack of sleep, over exertion at the gym and various other stressers for a good 3 months almost and hence the ultimate trigger to jump start my Celiac.

I'll also add that I'm not the only one in my family to have celiac, my mother has it as well. Thanks mom >_<... My symptoms began shortly after jumping off the meds, about a month and half exactly and at first they were minor and I could have easly contributed them to the med withdrawal. My symptoms incuded nausea, diahrea/constipation, eye floaters,and last but not least the dreaded tinnitus/minor hearing loss which is killing me to this day. This is where my diet came into play as well. I thought what could possibly be the healthiest diet to add onto my new style of living. Wheat wraps!!!! Yep, 4 nice size wheat veggie wraps a day and some pretzels to top it off.

The symptom that really got me going on my quest to figure out just what the heck was going on with me was probably the hearing issues I began having. They hit me like brick and steadly progressed day after day. Mind you before this event I had perfect hearing. All the while I also had some minor bathroom issues but not enough to cause any alarm. So, this is where the doctor hunt began. 4 ENTs, 3 audiologists, and 2 neurotologists later I was out of luck. There was really nothing they could do about the hearing loss steadily increasing tinnitus.

This where I began to try and make a connection between my symptoms and the possible cause. I noticed my ears flared up directly after eating. I mean they sounded like jet engines, scary stuff. Well I figured it must be my TMJ. A few dentist visits later and some useless bite splints I was still no better off. Mind you at this time I would have been over 3 months off my meds and the withdrawal had dissipated. At this point I was also still having only minor intestinal issues as well. Still nothing to cause alarm.

I then decided to go to my GP and demanded I get tested for lyme disease since there are a lot of tics around me. We also did a complete blood panel. And again everything checked out fine including the CBC. At this point I was ready to give up, but then it hit me. I was sitting in Jersey Mikes eating a nice giant whole wheat sub sandwhich when the jet engines were going off in my ears again and I finally put 2 and 2 together. I went to an allergist to get tested for allergies where they do the stupid little skin test. Not surprisingly they all came back negative, including the food tests. So before walking out of her office I practically had to beg her for a celiac blood test. And after I explained my symptoms to her and the skin test being negative she thought I was crazy. I bet she doesnt think that now.

So here I am today. Got the results back a few days ago. Started the diet a little over 2 weeks ago. I can not believe the ear troubles I am still having to this day, it was getting so bad I asked my doctor to let me give prednisone a shot which I started taking yesturday. I can deal with the other symptoms but this ringing has got to go . If anyone else has had similar ear issues linked to there celiac please feel free to share your experience. I am hoping that since I've been having symptoms for about 5 months it will slowly disipate in time. However its still going fairly strong. Sadly I'll admit, I researched the whole celiac route a month or 2 after my symptoms started and around the time I thought it was my TMJ, but since I couldn't find much on any hearing issues or nuerological symptoms and also the fact that I had never been allergic to anything my entire life it quickly fled my mind. Looking back I feel rather stubborn for not taking it more seriously.

Anyway, none of your probably even read all that lol I know its long but I figured I'd share my story, espicially since these past 5 months have taken a huge toll on me. I see a gastrointerologist in a week, so I'm sure I'll have some answers then but if anyone can share some of there neuro experiences and maybe give me some comfort I'd greatly appreciate. The tinnitus is driving me mad

[IrishHeart]

I read it all.

I had wicked tinnitis, TMJ pain, and many debilitating neurological symptoms (ataxia, parasthesia, burning nerve pain, cognitive issues, etc) but it would take twice as long for me to write them all out again so you could read them. Suffice to say, looks like all these issues could very be related but I have no idea how long it will take for you to resolve them all.

Everyone heals at different rates. Give it time.

Many of us had to endure these awful symptoms for years before we figure it out, so don't be so hard on yourself for not seeing it sooner.

Maybe this will help a little:

and most of all, be patient, hon. Healing takes time.

Welcome to the Forum.

[ageofrockets]

Irish thanks for the reply. I'm still in shock that just 5 months of this disease, has done so much damage to my ears in terms of tinnitus and even a 20db loss in my lower frequency hearing. I know its linked because eveytime after I ate my typical glutenated meal whether it was a sub or wrap or even just cheerios it was only a matter of an hour sometimes minutes where my ears would literally scream. I would even get a pinched feeling in my ear as if someone were squeezing the nerve and hitting an on off switch to my ears. I'll admit I was eating a lot of gluten but still the nuerological implications were huge to me. Mentally I am beginning to feel much better albeit it's still difficult to concentrate with a constant EEEEEEEee going off in my ears. The sad part is i almost had virtually no intestinal issues. Not so much as a single stomach ache, just weird stools and I had to go more often. Still none of those issues really seemed all that odd to me. I think their needs to be more awareness between the auditory system and celiac . If you type into google the only thing that really comes up in terms of studies is a 2009 study that calls it a "coincidental finding"... Sorry but it's not just a coincidence

[IrishHeart]

Many people have what's called Silent Celiac. They have no overt GI symptoms, but OTHER health conditions.

My head swam with that tinnitis and buzzing. It was awful. I thought I was tripping sometimes. I felt disoriented and banged off walls when I walked, covered in bruises. I felt like I was in slo-mo and on a moving sidewalk at times, too. The vertigo was bad. I almost fell off a treadmill, so I stopped going to the gym.

It is my understanding that gluten can penetrate the intestinal lining and enter the bloodstream, by its own mechanism, and travel to the brain where it can damage or disrupt cells or cause inflammation.

I had eye problems, ear problems, throat problems. You name it. Inflammation causes havoc. Since any "-itis" means inflammation, those issues should reduce when you remove the substance causing the inflammation.

I think anything is possible in a celiac's body if gluten is involved.

The tinnitis in me has gone down to a level where I barely notice it anymore.

I hope you have symptom resolution soon!!

[woodnewt]

Well, needless to say it put my body through hell, with lack of sleep, over exertion at the gym and various other stressers for a good 3 months almost and hence the ultimate trigger to jump start my Celiac.

The symptom that really got me going on my quest to figure out just what the heck was going on with me was probably the hearing issues I began having. They hit me like brick and steadly progressed day after day. Mind you before this event I had perfect hearing.thing they could do about the hearing loss steadily increasing tinnitus.

This where I began to try and make a connection between my symptoms and the possible cause. I noticed my ears flared up directly after eating. I mean they sounded like jet engines, scary stuff.

So before walking out of her office I practically had to beg her for a celiac blood test. And after I explained my symptoms to her and the skin test being negative she thought I was crazy. I bet she doesnt think that now.

So here I am today. Got the results back a few days ago. Started the diet a little over 2 weeks ago. I can not believe the ear troubles I am still having to this day, it was getting so bad I asked my doctor to let me give prednisone a shot which I started taking yesturday. I can deal with the other symptoms but this ringing has got to go . If anyone else has had similar ear issues linked to there celiac please feel free to share your experience.

Anyway, none of your probably even read all that lol I know its long but I figured I'd share my story, espicially since these past 5 months have taken a huge toll on me.

I also believe there was a "stress trigger" for the development of my celiac disease: I don't believe I had celiac disease until I turned 18, which was a few months after I developed a very severe gastrointestinal infection. I was always fine with any sort of foods when I was a child and teenager, with one exception starting in my mid-teens: I developed severe tinnitus accompanied by swelling of the ears and severe chronic headaches and migraines. It started mild but progressed to the point where it eventually became unbearable. It was directly linked to an allergy to barley years later. Perhaps this barley allergy was the sentinel warning for celiac; who knows. I had significantly changed my diet two years prior: I'd become a strict vegetarian.

The tinnitus and swelling appears within minutes of consuming anything with even trace barley and eventually was accompanied by more classical allergic symptoms: rash, difficulty breathing, and rhinitis. So the severity of the allergy developed over the years. The headache seems to be a more delayed reaction, appearing hours later and lasting (along with the tinnitus) for weeks after exposure. I have to carry around some medications in case I ingest barley by accident again - the last time was in 2007 - and the reaction was so severe I had to go to the ER. Fortunately not life threatening. Just a very bad reaction.

When I was a teen the tinnitus was severe and constant (like a hollow roaring noise cupped over my ears accompanied by pressure and severe headache). In terms of recovery: I have very mild tinnitus now, no headaches or migraines, and none of the other symptoms. I would say it took a total of six months or so perhaps after diet change (I was barley-free before I was gluten-free). I know the barley allergy is separate from the gluten issue (but likely also connected in some way). I can't really tell if I'm being cross contaminated with gluten ***grains (other than barley***) until I start losing weight and it effects my digestion and stools. With barley, the reaction is near immediate. (Actually, neuropathy is a "warning" symptom that I do get with gluten but I also get occasional episodes of neuropathy when I'm not exposed to gluten, so it's hard to know for sure).

I also have a bunch of floaters all over my vision (since you mentioned floaters) but I have no clue what that's from. They seem pretty permanent and I've gotten used to them.

***edited to clarify

[rosetapper23]

Have you tried taking a quality B Vitamin complex? B Vitamins have been associated with tinnitus and might be worth a try. A number of us take a co-enzyme Vitamin B complex through Country Life.

[IrishHeart]

I have floaters too. They are considered harmless ( by those who don't have them, I suspect) and they are annoying.

if they suddenly INCREASE or your vision gets very blurry or you have flashes of light, RUN to the nearest ER.

You could have a detached retina. I had that happen last month on vacation and it was not a retinal detachment, thank God, but a vitreous detachment and it was scary.

And yes, Celiac is triggered by something, a trauma, an accident, a pregnancy, an illness, a major stress, that sort of thing.

BARLEY is a gluten grain. Not a separate issue at all.

[woodnewt]

BARLEY is a gluten grain. Not a separate issue at all.

Of course, very true. But it's also possible to be allergic to barley (IgE rx) without having celiac disease. I just think my allergy to barley is independent from my celiac disease. It's a separate but connected issue. If that makes any sense at all?

[ageofrockets]

@newt the floaters havent occured in a while they really only occured right before the onset of the tinnitus and other symptoms and were quite rare. I would get these weird white speckly dots in my vision for only a few moments and they would just disappear. I guess i could look at them niw as an early warning sign.

@Rose Since coming off all the meds I stocked up on such a diverse group of supplements my room looked like a pharmacy. Since the celiac diagnosis i'll admit i've kicked the b12 into high gear since i wasn't eating much meat prior for a long time. I know the risk of taking to many B vitamins is near impossible since they are water soluable so i figure better to be safe than sorry.

btw Any insight anyone want to add in reguards to my blood test results from what I'm gathering they seem relativley high but then i dunno

[IrishHeart]

Of course, very true. But it's also possible to be allergic to barley (IgE rx) without having celiac disease. I just think my allergy to barley is independent from my celiac disease. It's a separate but connected issue. If that makes any sense at all?

true, true! . Allergies are very different from intolerances.

(which is why I never refer to celiac as a gluten allergy)

But with celiac, I do not think these things are coincidences.

And an IgE -mediated allergy to gluten grain makes sense to me!

Just my humble opinion, of course.

[IrishHeart]

Since the celiac diagnosis i'll admit i've kicked the b12 into high gear since i wasn't eating much meat prior for a long time. I know the risk of taking to many B vitamins is near impossible since they are water soluable so i figure better to be safe than sorry.

This is NOT entirely true. High B-12 and B-6 in the system is NOT good. It can cause burning neuropathy.

Get your vitamins from FOOD.

My doc took me off all B's for a while because ONCE YOU START ABSORBING, THOSE B'S WILL BUILD UP. I had a B-12 and B-6 and B-9 (folate) deficiency and I supplemented heavily and then, it became too much. My levels were so high, he said STOP IT!

You CAN and will become toxic. Take only what you need.

Others will disagree with me on this vitamin-loading topic (I am used to it ) but I am living proof.

[rosetapper23]

Since tinnitus is your biggest problem, I'd suggest that you ask your doctor to specifically test for all of your B vitamins so that you don't accidentally get overloaded. You may have to take B-12 in sublingual form or injections if you're low, and you should take co-enzyme B vitamins if you're low in others (I'll bet the one you're taking is NOT the co-enzyme type).

[IrishHeart]

Good idea, ROSE!!!

[ageofrockets]

I don't think CVS, wallgreens, or riteaid carry sublingual b12. Where can I pick those up, would GNC or vitamin world have them?

[frieze]

I don't think CVS, wallgreens, or riteaid carry sublingual b12. Where can I pick those up, would GNC or vitamin world have them?

You may find sublingual B12 at one of those, but it will be cyanocobalamin, not methyl. Try on line, Iherb, puritans pride, whatever. The research with B6 and neuropathy was with large doses, and again not the "activated/methylated" version. B12, large doses in a deficient person, may give rise to "healing" pain, much like the reawakening of a limb after it has "gone to sleep". Make sure you have good sources of potassium in your diet, that may help.

[squirmingitch]

Before we found out my hubs had celiac every single time he drank beer he would get the most excruciating pain in his ears. He described it as a migraine in his ears. Now we know why.

[Pisqualie]

Wow! I had no idea ear issues were linked to Celiac??? I have a ringing and feel stuffed in my ears - but not constantly. Mine seems to be connected to my anxiety level - thought it was TMJ as well or clenching maybe.

What a journey you have been on! I'm still trying to locate my pinpoint but I am so happy for you. You'll have to update us and let us know how things are going for you!!

[ageofrockets]

Well, it's been almost 3 weeks since becoming gluten free. I'm still eating dairy (cheese) and sory based products (hummus) which after reading some of the stories on here I'm debating whether or not i should cut those out of myndiet as well. I started taking prednisone 5 days ago too in hopes of halting and possibly even reversing some of my hearing issues related to celiac. On the plus side the ringing has subsided some, on the down side however the hearing loss has not improved much if at all. I'll give it some more time, from reading other peoples experiences on here the nuerological symptoms of celiac can take weeks months to even years to sort out! tomorrow i see a gastroenterologist so i'll see what he has to say

[ciamarie]

I just found this thread, and thought I'd add what I've discovered. I won't go into the whole story, but I've had issues with my ears, including ringing, for over 2 years now. Since I've been gluten-free for over 7 months now, the itchiness is thankfully mostly gone. But since I've had ongoing issues with ringing and swelling that weren't relieved with eating gluten-free only, I've finally figured out that I also need to avoid MSG and sulfites.

According to some information I found here Open Original Shared Link , it's not uncommon for those of us that are sensitive to MSG to also have issues with sulfites. I wish I'd have known that 3 or 4 months ago, but at least I know it now. Actually, I wish I'd have known all of this 30 years ago, since it's not the first time I've had issues with my ears swelling, etc. but the other times were short-lived in comparison. And tinnitus is a symptom for both types of sensitivities, in case that helps.

[Marie1976]

What?! I have anxiety, and I can see how that could have been celiac-related all along (even though I am still suffering from it after being gluten-free for over a year), but hearing loss and TMJ? I've had both of these problems for years. Are these really caused by celiac disease??