Testing and Low BP

[Nikkiann]

Hello all! As you can see, I'm new here. I read around the forum and I haven't been able to pin point a similar post so I figured I would post.

I recently had a blood test for Celiacs that came back with "strong markers". I've been only experiencing stomach problems for about a year and a half now. A bit backstory. I was overweight for a long time, so I started eating low carb (I didn't know it was low carb at the time). I lost 60 pounds from this in a short period of time. My iron got low, but doctors told me this was due to the rapid weight loss. I lived in England for a while and traveled and came home and got together with my now fiancé. We decided we wanted to lose more weight. We went on a very strict low carb diet for about 3 months. After that it would be on and off for a while. Every time I would start eating carbs, though, my stomach would be in intense pain, bloating, and would create nausea. I assumed this was because I stopped eating carbs for so long, that my body saw it as foreign at this point. My fiancé, who had also been eating low carb, would also get this bloat and sometimes pain, but nothing like me. I saw a GI person, got a sonogram, it came back negative, but never went for blood testing. It has been a year since then and the only relief I ever get is when I am on my low carb diet. I know a large percentage of carbs and gluten-containing foods go hand and hand. I developed anxiety this past summer, about the same time as my fiancé. We dabbled in drugs a few times around this time too, the exact time the anxiety started. I also passed out twice, and was told after that I had static hypotension, which are aligned with many symptoms of a Celiacs person eating gluten. As you can see, a lot of these symptoms go hand and hand. I have zero deficiencies in everything else.

My doctor wants me to now go for an endoscopy/biopsy, and I have two concerns.

1) I am extremely nervous to endure the anesthesia, due to my blood pressure. My general practitioner said although my BP isn't technically textbook low, it is still on the lower side in conjunction with the static hypotension, and to stay away from antihistamines, medicines that alter heart rate, etc. I know they monitor you closely during these things, but I was wondering if anyone had any advice and if someone has endured this procedure with 'low blood pressure' or anesthesia in general with it.

2) As you can see, a lot of my "celiac symptoms" go very closely hand and hand with events in my life, so I'm not sure how I can make sure, 100% without a doubt, that Celiacs is what I have before I change the course of my life.

As you can see, I am super paranoid LOL I work with medical malpractice on a daily basis, and through experience myself, have a big distrust for doctors.

 

Thanks guys!!

[cyclinglady]

Welcome!  

My endoscopy was a breeze.  I was not worried about it at all!  Your anxiety (many Celiacs experience anxiety) is probably contributing to your worrying.  

With strong celiac antibody markers, it is likely that you have celiac disease.  Just make sure they take plenty of samples.  Even if negative (damage can be patchy),  consider trialing the gluten free diet.  Who knows what environmental trigger started the process?  

You can only go forward and improve your health.  

[cristiana]

Hi! 

In the UK an endoscopy is usually done with a sedative but believe it or not, not always.

My coeliac friend was not even offered a sedative when she had hers done on the NHS.  She told me she gagged a little when they were putting the tube down but that was all.

I had a sedative (I had no option - I went private and that's the way they do it at the hospital I used) but to be honest it was over in a flash.   I think I'd recommend a sedative but it just goes to show - it isn't strictly necessary if my friend's experience is anything to go by!

 

[Jmg]

Hi and welcome

3 hours ago, Nikkiann said:

1) I am extremely nervous to endure the anesthesia, due to my blood pressure. My general practitioner said although my BP isn't technically textbook low, it is still on the lower side in conjunction with the static hypotension, and to stay away from antihistamines, medicines that alter heart rate, etc. I know they monitor you closely during these things, but I was wondering if anyone had any advice and if someone has endured this procedure with 'low blood pressure' or anesthesia in general with it.

I also have the orthostatic hypotension, although it's much better now I've removed gluten from my diet. 

I had the endoscopy without anaesthesia simply because it meant I could drive myself too and from the hospital. There was a throat spray to numb the throat and that was it. I must be honest and say that I found myself gagging repeatedly throughout the procedure and it wasn't a pleasant sensation. If I were to have another I think I'd have the anesthetic, but if the doctor advised against it I'd have no problem doing it without. Discuss it with them and see how you feel, but I suspect you'd be ok either way.

3 hours ago, Nikkiann said:

2) As you can see, a lot of my "celiac symptoms" go very closely hand and hand with events in my life, so I'm not sure how I can make sure, 100% without a doubt, that Celiacs is what I have before I change the course of my life

The sheer range of symptoms makes this a nightmare to diagnose and is one of the reasons so many don't get the diagnosis they should. There's some links in the attached threads which may make interesting reading:

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

My advice would be to follow through on the testing, if positive, then you have your answer, if negative, please give serious thought to trialling the gluten free diet in any case. I tested negative for celiac, but gluten affects me in a large number of ways nonetheless. Non Celiac Gluten Sensitivity is the current name for this. You may be one of those people, in which case it would be a real shame to never identify the problem due to a negative celiac test.

best of luck

 

 

[moosemalibu]

I also have orthostatic hypotension and I was sedated for my endoscopies (have had 2) and colonoscopy. Certain sedatives/anesthetic drugs decrease blood pressure more than others and some have very transient changes. Discuss the anesthetic protocol concerns with your doctor. They may find a cocktail that is right for you. You're probably not too unique with this issue and they have probably dealt with many patients with this confounding issue. 

[GFinDC]

The recommended gluten challenge is 12 weeks before the blood antibodies tests, and 2 weeks before the endoscopy.  That challenge period is eating at least some amount of gluten each day.  A slice of toast or  a cracker is fine.  If you haven't done a proper gluten challenge the test results are not always accurate.

[Nikkiann]

Thank you everyone for all your help! Really, it's helped me understand this process a little better.