85% Chance of Celiac According to DR Does it Explain Everything?

[loca5790]

This will be a little lengthy sorry.  I also am 26.  Some issues started happening around age of 16.

I was diagnosed with GERD at 15-16 and started taking nexium.  I went through a bought of lactose intolerance, where it would physically make me sick if I touched the stuff just out of the blue.  It passed after about five years but I was getting pretty bad upper back pain and started physical therapy for it.  This made back pain manageable.  The weird thing with the milk/lactose was soy milk and pretty much all milk but almond/coconut completely screwed me up.

A few years ago I started developing bladder/pelvic floor muscle spasms.  They were manageable with some valerian root so I would take some occasionally but then I started developing lower back pain.  I started meds for bladder spasms which helped and went to physical therapy for my lower back this time.

A couple years ago I started getting really dizzy and lightheaded spells.  I was unable to think and would go into server brain fog and it got the point where I would not be able to go into work.  I then started developing weird pressure in my ears and head.  All my blood work came back normal, brain/ear mri came back normal, and steriods seemed to put the symptoms at bay when I was on them and sometimes they would stay away for a few months.  They seemed to get better and DR thought maybe it was a severe ear infection that caused some damage.  I had no hearing loss so they put me on nasal spray.  I then tried taking some pseudophedrine and found I was unable to go to the bathroom.  My urologist put me on prostate medicine and sent me to physical therapy for pelvic floor.  This helped but the dizziness and lightheadedness and brain fog was still coming back.  My urologist said it was weird because my prostate was not that enlarged.  After a few months I disliked the symptoms so much and I thought the physical therapy was helping that I stopped all bladder medicine.  It was at about this time that I started to get lethargic during the day.  I thought maybe it was the Valerian root depressing my nervous system so I quit taking that.  I then noticed that my heart rate was dropping into the low 40's and I would have to take caeffine to help get it back up.  It didn't happen often but it seemed to coincide with my very dizzy spells. I had an EKG and stress test done and it all looked good.

At this point I went to another dr who diagnosed me with SCCD but wanted to do a CAT scan of the brain of which I declined because my only option was inner ear surgery if this was the case.  I started then to develop severe bloating pretty much all the time, and my heartburn was pretty bad like 90% of the time.  Even when I tried taking nexium twice a day as recommended.  My gastroenterologist put me on protonix which did nothing so I switched back to nexium.  I still was having stomach bloating and then developed phantom symptoms of having to go number 2 but nothing ever came out.  Just stomach felt like it did when I ate a lot of milk back when I couldn't handle it.

At this point the doctor did an EGD because I had started to stop taking all my medicines but the heartburn was so bad I couldn't stop nexium.  I was thinking maybe it was my medicines causing problems.  They wanted to check for any damage to my esophagus before I stopped Nexium again because I have GERD and have had ulcers due to H Plyori outbreak before.  First glance he thought maybe I had barrets so I went in for a follow up visit to check out results.  He informed me it was normal somach lining but that I biopsy was positive for celiacs with 85% certaincy and needed blood-work to confirm.

I have since started an SCD diet because I did notice negative affects with gluten and even milk again.  I have cut out nightshades, milk, emulsifiers, gluten, legumes and grains.  I am doing this in an attempt to make sure I cut out the things that may bother me and after a few weeks I hope to start phasing them back in.

I have an event monitor I'm starting soon to look at low heart rate and the palpitations I get, but I still even at this moment get light headed and brain fog.  I have been gluten free for about a week now.  Is this something normal.... the symptoms I'm having.  Can brain fog, dizziness, heart issues, and muscle spasms all be related?  

 

I'm not sure what my next steps are, I just want to feel healthy again and be able to think.

[squirmingitch]

Whoa, whoa, whoa!!!! Did you already get the blood work taken????? If not then you need to get back on gluten ASAP if not sooner!!!!! You can NOT go off gluten until ALL testing is done unless you want false negatives.

Secondly, what is this 85% positive for celiac that the doc says the endoscopy revealed. He did 1 biopsy? Or more than one?  Normal stomach lining????? What does the pathology report say?

Biopsy is the gold standard for diagnosis and if ONE biopsy is positive for celiac then you have celiac not 85% celiac. You shouldn't even need blood work if a biopsy is positive.

See? You need to get copies your records so you know what the heck is going on because what you've related here makes no sense.

As to the issues you've had over the years..... absolutely many of these can be symptoms of celiac.

49 minutes ago, loca5790 said:

Can brain fog, dizziness, heart issues, and muscle spasms all be related?  

YES! They can all be due to celiac.

As to being off gluten for a week. That is no nearly enough time for your gut to heal if you are a celiac. You can not expect to feel great overnight or in a week or a month. You didn't get sick overnight and you won't heal overnight.

I may have misunderstood some things in your post & please don't think I'm yelling or being short with you; it's just that what you posted may not be very clear as to exactly what all has gone on with your celiac testing and we just want to make sure you're getting the correct testing so we're asking questions.

 

[etbtbfs]

Low heart rate and lethargy could be hypothyroidism.  Ever had a full thyroid panel (TSH,FT3,FT4,rT3,TPO antibodies,TG antibodies)?  If gluten destroys gut integrity, autoimmunity follows.  Possibly thyroid autoimmunity.

[etbtbfs]

BTW brain fog is a classic hypothyroid symptom.