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Update #2

Simona19

By Simona19
in Related Issues & Disorders

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Simona19 Collaborator
Simona19
Posted

Today I saw my neurologist. I told him all my symptoms and he thinks that I might have POTS because I have almost all symptoms for this. I made short videos from my three episodes and he look at them. I also gave him 30 paper with all my 24. symptoms, list of all things that happened during past 14 months (doctors and ER visits, tests and blood works) and also with samples of 10 days from my diary where I wrote what I eat or drink, how much, when, how I feel afterwards, how much I pee, amounts, when I had headache, any muscle twitch, numbness, etc. He wants me to go to a hospital for 3 days observation- EEG and video. He also wants me to have another Tilt table test.

My question is: Can all this be related to celiac disease? Can gluten free diet improve POTS?

Was somebody diagnosed with POTS? What was the reason in your case for POTS? What should I look for- illness that can cause POTS? Did your POTS symptoms improved after time or medication?

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Simona19 Collaborator
Simona19
Posted
  • Author

I just realized that I didn't explain what POTS is. It's the Postural orthostatic tachycardia syndrome. My blood pressuree would drop down after any food, after changing positions which is the cause for my severe dizziness, weakness, fainting feeling - pre-syncope ,and hearth palpitations.

This syndrome means that my blood pressure would drop down, but my hearth would start to pump very fast and I can hear my hearth beat in my head. I feel like I will faint any minute and I need to lay down or squad right away, or I would end up on the floor. It got to the point that it's happening every day, specialy after eating.

At first I thought that I have dumping syndrome, but the recent test showed regular transit of dyi trough small intestine. As I told all my symptoms to my neurologist and he saw my videos, he told me that all this look like I have POTS.

ravenwoodglass Mentor
ravenwoodglass
Posted

I had POTS amd extremely low blood pressure since childhood. It meant getting up very slowly from sitting or laying down otherwise I would get dizzy and feel like you describe.

Within a few months gluten free my blood pressure was within normal levels and I don't get dizzy when I stand any more so it was definately associated with gluten for me but know if that will be the case for you.

Simona19 Collaborator
Simona19
Posted
  • Author

I had POTS amd extremely low blood pressure since childhood. It meant getting up very slowly from sitting or laying down otherwise I would get dizzy and feel like you describe.

Within a few months gluten free my blood pressure was within normal levels and I don't get dizzy when I stand any more so it was definately associated with gluten for me but know if that will be the case for you.

As you mentioned childhood I realized something. I had always low blood pressure during my childhood and I fainted 12-13 times. The last time I fainted (I lost conciousness for few minutes)was when I was 25.

I already had problem with tachycardia when I was 19 years old. My doctor put me on metoprolol for that. I was taking it only when I had palpitation. After 4-5 months I ended up in hospital with swollen brain and double vision. In hospital doctors tried to help me and gave me corticosteroids, many IVs and other pills (36 pills per day). I had very bad palpitations from them. Doctors gave me some special injection when I felt very bad. Later I got allergic reaction- hives, to metoprolol and for years now I was telling every doctor that I saw about it. Everybody look at me like I came from other planet. They didn't believed to me because I was very young for this medicine.

I have question: Is this genetic? Are people born like this? My husband have problem with high blood pressure. He's been taking medication for it from 24 years of age. His all family has problem with it- two brothers, mother, father, grandparents. This week doctor told him that in his case it's genetic. He is very young to have very high blood pressure early morning when he wakes up.

I have very low blood pressure- opposite of him. I have it all my life as you. Did you took any pills for it, or your POTS disappeared by itself?

ravenwoodglass Mentor
ravenwoodglass
Posted

I have very low blood pressure- opposite of him. I have it all my life as you. Did you took any pills for it, or your POTS disappeared by itself?

Mine cleared up on it's own and my BP is now in normal ranges. The only thing doctors ever did was tell me to change positions slowly to prevent 'attacks'.

jebby Enthusiast
jebby
Posted

I had problems with orthostatic hypotension for years before being diagnosed with celiac, and since being gluten free the last year and a half, my blood pressure has normalized and I no longer feel dizzy when standing up. I do believe that the two are related.

Simona19 Collaborator
Simona19
Posted
  • Author

I had problems with orthostatic hypotension for years before being diagnosed with celiac, and since being gluten free the last year and a half, my blood pressure has normalized and I no longer feel dizzy when standing up. I do believe that the two are related.

I have problem also with postprandial hypotention - sudden drop in blood pressure after food, or water in my case. This type is related to POTS. This is happening every time I will eat, or drink something. I can't function like that anymore. This problem started like month before I went on gluten free diet. Both of you have good results being on this diet, but in my case the result is different. My condition is much worse on gluten free diet, or because I went on diet the other illness that I had got more visible. I don't know what to think or what to do because so far not one doctor knows what is wrong with me and why.

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jebby Enthusiast
jebby
Posted

I have problem also with postprandial hypotention - sudden drop in blood pressure after food, or water in my case. This type is related to POTS. This is happening every time I will eat, or drink something. I can't function like that anymore. This problem started like month before I went on gluten free diet. Both of you have good results being on this diet, but in my case the result is different. My condition is much worse on gluten free diet, or because I went on diet the other illness that I had got more visible. I don't know what to think or what to do because so far not one doctor knows what is wrong with me and why.

Hi Simona,

Are you sure that you are not getting trace amounts of gluten in your diet? For the first few months after I went gluten free, my body would strongly react to the slightest amount of cross-contamination, but it seems like that has gotten better with time. Perhaps you could try a "whole foods" diet for a few weeks, i.e. fruits, veggies, plain meats, no grains, and no processed foods with a risk of gluten contamination, and see how your postprandial symptoms are?

J

Simona19 Collaborator
Simona19
Posted
  • Author

Hi Simona,

Are you sure that you are not getting trace amounts of gluten in your diet? For the first few months after I went gluten free, my body would strongly react to the slightest amount of cross-contamination, but it seems like that has gotten better with time. Perhaps you could try a "whole foods" diet for a few weeks, i.e. fruits, veggies, plain meats, no grains, and no processed foods with a risk of gluten contamination, and see how your postprandial symptoms are?

J

I know that you mean well.

I will eat just two bites from peach, or drink 1 cup plain water and I feel it. I will have postprandial hypotension. I will get dizzy right away. I won't eat breakfast most of the time. I will sip water, or I will have some fruit. I would be dizzy even after that. For lunch, about 1-2PM I will have gluten free bread with egg, or margarine and jelly, or some left over from last night dinner. I'm cooking dinner every day. I stopped eating Chex cereals with rice milk, or other gluten free food. Only thing that I will occasionally have is Dark chocolate Dream chocolate, So delicious yogurt, Shar bread stick, or pasta, and MarryME ice cream bars. I'm also experimenting with bread and mixing flours. For dinner I will cook something with chicken (grilled, cooked, baked), beef(hamburger, goulash), or something vegetarian (pasta, potato soup, cabbage soup, ziti). I don't eat any milk products. Sometime I will mix tofu in my cakes, or have veggie cheese (like 1 slice per 3 months).

I have been seeing a chiropractor for the past month. He told me that I have problem with first vertebra on left side of neck/head. When he pops my neck I feel very good, fresh.

I explained everything to him and he told me that to him all this looks like problem with vagus nerve and some nerve imbalance,or damage. In September I will go to hospital for observation and 72 hour video EEG. I hope that doctors would find something wrong and they would give some pills for my problem. It's getting worse every week.

I don't know what to do anymore.

Gfreeatx Apprentice
Gfreeatx
Posted

Hi Simona,

I was diagnosed with POTs back in 2005 and Celiac Disease finally in 2010. I definitely believe for me that the two are related. I could not believe that shortly after going on the gluten free diet that most of my POTs symptoms started to improve dramatically. I used to have to worry about passing out on a daily basis and just trying to get through every day was exhausting. Now I have so much energy I don't know what to do with myself sometimes. :) I do notice if I get accidently glutened or even just a little cc my POTs symptoms come back with a vengance. The good thing now though is they go away much faster than they used to. I would definitely double check everything you are eating and any medicines you are taking as I found out about 3-4 months into going gluten free that I was still getting some cc some from products that were supposed to be gluten free which was still making my POTs symptoms flare up. I really took me about 7-8 months for almost all of my POTs symptoms to go away. I wish one of my doctors had thought to test for Celiac disease when I first became so ill since I was tested for just about everything else. I am thankful though to have an answer finally and to be able to finally enjoy life again. I hope you start to feel better soon!

Gfreeatx Apprentice
Gfreeatx
Posted

Hi Simona,

I was diagnosed with POTs back in 2005 and Celiac Disease finally in 2010. I definitely believe for me that the two are related. I could not believe that shortly after going on the gluten free diet that most of my POTs symptoms started to improve dramatically. I used to have to worry about passing out on a daily basis and just trying to get through every day was exhausting. Now I have so much energy I don't know what to do with myself sometimes. :) I do notice if I get accidently glutened or even just a little cc my POTs symptoms come back with a vengance. The good thing now though is they go away much faster than they used to. I would definitely double check everything you are eating and any medicines you are taking as I found out about 3-4 months into going gluten free that I was still getting some cc some from products that were supposed to be gluten free which was still making my POTs symptoms flare up. It really took me about 7-8 months for almost all of my POTs symptoms to go away. I wish one of my doctors had thought to test for Celiac disease when I first became so ill since I was tested for just about everything else. I am thankful though to have an answer finally and to be able to finally enjoy life again. I hope you start to feel better soon!

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