Does This Sound Like Celiac / Intolerance?

[Mad Maxx]

Ok, so here's my Story, it's gonna be a long one. 

 

This has now been going on for almost a year, and there was nothing leading up to it. I literally went to bed fine 1 day and woke up the next all banged up.

 

Up until this happened, I was doing 100% perfectly fine.

 

Back in March '13 I went to a Parade for St. Pats day, Drank (not til I blacked out or threw up), Socialized, ect... Came home, made some food, and went to sleep. The next day I woke up and I felt dizzy. I figured I was just hungover / still drunk from the day before and wrote off how I felt. Made it through that day and went to sleep.

 

The next morning I woke up at 6am and knew something wasn't right. My resting Pulse was 120bpm+ and my bp was 150/100, had pain / tightness in the back of my head, and my Vision was all Fuzzy (not blurry). So I called my PCD and they couldn't see me that day, so I scheduled for the next day. By Noon, I was bad, I called my PCD back and told them what was going on, they said if it's that bad, go to the ER. So I go to the ER, they see me right away. They do an EKG - everything fine...CT Scan of Head - everything fine...Chest X-Ray - everything fine...Pull 8 tubes of Blood - everything they checked was fine...I was in the ER for 7 hours, doc comes back in and takes my Vitals, they tell me everything is fine, go home.

 

I go see my PCD the next day and my BP and Pulse is still elevated, not high, but elevated. They put me on Toprol XL to bring my BP and Pulse down, and set me up with a Cardiologist.

 

I go to the Cardio Doc and as soon as he sits down and looks at my file and everything, he says I don't need to be there, I don't need to be on the Toprol XL. He tells my PCD to take me off the Meds, my PCD refuses. So for 2 Months months I'm on the Toprol XL and they are REALLY messing with me. Sometimes by BP will be Low, sometimes it'll be High, same with my Pulse, sometimes low, sometimes high, and I was having ALOT of Panic Attacks.

 

Throughout all this, my Symptoms are now, Rapid Pulse, High BP, Muscle Spasms, Fuzzy Vision, brain fog, confusion, slurred speech, muscle weakness, always tired, sensitive to light and sound, full body tingling sensation, panic and anxiety attacks, mood swings, thoughts of dying, chest pain, shallow breathing, always having to take a deep breath, memory loss.

 

Also, up until this point, I kid you not, I had about 30 EKG's because of the chest pain and breathing difficulties. It was to the point, my PCD wouldn't even charge me for an appointment because I was there so often.

 

So I get off the Toprol XL and my PCD thinks it's Lyme, so they put me on Doxy 100mg 2x a day for 3 Weeks. No change in how I feel.

 

So now they think it's Vertigo, put me on Meclizine, that doesn't do anything.

 

So now after 3 Months, I finally see the Head Doctor of the office. He tell me it's all in my head, there's nothing wrong with me, and he thinks it's depression. I stop him there, tell him I'm not depressed, get all my medical records from the office and never return again.

 

I find a new doc and they go full blast on me.

 

They send me to:

ENT - Everything fine.

Neurologist - Orders MRI of Brain and Neck - Everything fine.

Optholmologist - Everything fine.

I go to my regular eye doc - Everything fine.

GI - Gets Cat Scan of Abdomen and Pelvis - everything fine.

New PCD Doc does Sonogram of Abdomen - everything fine.

Cardiologist - 24 hour Holter Monitor - everything fine...30 day event monitor - everything fine...stress echo - everything fine...more ekg's - everything fine.

New PCD doc runs Lyme Tests (through imugen) - everything comes back fine but it shows that I have Babesia - Titer 32. They put me on Mepron and z-pack for 1 week. Nothing Changes. Feel the same.

 

They put me on Biaxin and a steroid in hopes of knocking out whatever I have - nothing changes, still feel the same.

 

~~~My sis has Celiac, so we do the Blood Test test for that, comes back fine.~~~

 

Have a ton more tests ran, everything comes back fine. Even get retested for lyme and all co-infections, everything fine, it even comes back as me NOT having Babesia anymore.

 

Find an LLMD kinda local to me, so I make an appointment with him. He swears up and down that I have Lyme and nothing else. Pulls more Blood, tells me he's gonna send it to igenex, sends it to Quest instead (NOT happy about that after reading how bad Quest is with Lyme). Quest tests come back 100% fine. Despite that, the LLMD puts me on Doxy 100mg 2x a day for 1 month. Towards the end of that cycle, I get a nasty stomach bug, so I stop the Doxy for 2-3 Days because I couldn't even keep water down. I get better, start the Doxy again.

 

Go in for my Follow-Up appointment after completing the 1 month of Doxy and he gets all md that I got a Stomach bug and couldn't be on the Doxy constantly. So he writes me another 1 month Cycle and says he'll see me at the end of that. So that's where I am now.

 

The Doxy is REALLY messing with my head and my thoughts too (pretty scary), it's raising my BP and Pulse, giving me anxiety, it's just tearing me apart. LLMD doesn't seem concerned with that and tell me to stay on it.

 

So I go back to my PCD and all this time I've been telling docs it's prob a vitamin deficiency. They tell me I'm crazy, a deficiency wouldn't cause these symptoms. I finally convince my PCD to check my Vitamin Levels. Well well, it comes back that I have a Vitamin D Deficiency. My level is 20. So they put me on 50000iu of D3 for 2 Months, I'm about half way through that and I don't feel any better. I actually feel even worse some days.

 

So every doc I've been to has wrote me off as being fine, except the LLMD that swears I have Lyme even after 4 Negative Blood tests.

 

There's prob. some things I'm leaving out, but due to the memory problems, I can't think of them right now.

 

If you have any more questions or things to point out, please ask away or let me know and I'll try to help, because at this point, every doctor I've been to is stumped and I'm starting to lose faith and am thinking I'm gonna be a medical mystery for the rest of my life, or even "check out" early.

[GottaSki]

Welcome Maxx!

 

Unfortunately, your story is not unusual here.

 

Which blood tests were run for Celiac?  Often docs don't run the entire celiac panel.  

 

GI did a scan, but no endoscopic biopsies.

 

With your symptoms, nutrient deficiencies and a sister with Celiac Disease....sure sounds like Celiac is a very real possibility.  There are folks that are diagnosed with negative blood by endoscopy.  

 

If you don't want to push for an endoscopy, you could remove all gluten for at least three months (six is better) to monitor symptom improvement as this is the only test for NCGS (Non-Celiac Gluten Sensitivity).

 

Do not remove gluten until you are certain you've had a complete antibody panel and you've decided about an endoscopy.

 

Hang in there

[Mad Maxx]

Welcome Maxx!

 

Unfortunately, your story is not unusual here.

 

Which blood tests were run for Celiac?  Often docs don't run the entire celiac panel.  

 

GI did a scan, but no endoscopic biopsies.

 

With your symptoms, nutrient deficiencies and a sister with Celiac Disease....sure sounds like Celiac is a very real possibility.  There are folks that are diagnosed with negative blood by endoscopy.  

 

If you don't want to push for an endoscopy, you could remove all gluten for at least three months (six is better) to monitor symptom improvement as this is the only test for NCGS (Non-Celiac Gluten Sensitivity).

 

Do not remove gluten until you are certain you've had a complete antibody panel and you've decided about an endoscopy.

 

Hang in there

The Blood Tests I had done were:

 

Celiac Disease Serology Panel - 

 

Immunoglobulin A - 131.....on scale of 70-400

 

Transglutaminase IgA Autoabs - 0.6.....on scale of <15.1

 

Gliadin,IgG,Deamidated - 12.1.....on scale of <20

 

Gliadin,IgA,Deamidated - 1.0.....on scale of <20

 

Yep, GI has done just about everything but Scope me yet.

 

I tried going Gluten Free for about 2 Weeks, but that didn't really do much for me. So I figure that wasn't long enough. 

 

I've talked to my Sis alot about all this, and she said she's had alot of the same Symptoms I've had, some she hasn't, then some of her Symptoms, I haven't had, but like with any Disease, it affects everyone differently.

[GottaSki]

There are six of us in my family with Celiac Disease or NCGS and we all have a different combination of symptoms.

 

I'd vote for an endoscopy if you have a GI with training and/or experience with Celiac Disease.

 

Since you've had a complete panel you could opt to remove ALL gluten to monitor symptoms...If you decide to have an endoscopy in the future...at least the gluten challenge is only for two weeks rather than three months for bloodwork.

 

I will tell you that your total serum IgA while normal is on the low end...we all had Total Serum IgA similar to yours...two of my kids (13 and 15 at the time of my dx) had numbers like yours with the DGP-IgG higher than IgA but within normal range and my daughter (25 at dx) had only a positive DGP-IgG with biopsy confirmation of Celiac.   My own numbers were only weakly positive except for strong positive DGP-IgG with complete villious atrophy at age 43 after decades of health issues dismissed by doctors.

 

Good luck with whichever path you choose

[Mad Maxx]

Thanks for the Help

 

I think my Sis said all her Blood Tests were Negative as well, and the only way she found out was by getting Scoped. 

 

I did some reading way back when this happened and the Consensus was that the Blood Test alone isn't too Accurate. 

 

I have another Appointment with the GI in March, so I'll see if he wants to Scope me and see what's goin on inside.