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Can Celiac Cause Dysautonomia


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#1 evo123

 
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Posted 02 August 2009 - 09:04 AM

I have been suffering from autonomic dysfunction for 3 months now. 7 weeks of this was spent in hospital extremely unwell and the cause has not been found. They suspect the form I have to be postural orthostatic tachycardia syndrome (POTS). This can be an illness on its own or caused by something (secondary). On the wikpedia website it says that celiac has to be ruled out (amongst several others) before a diagnosis can be made. I was diagnosed with celiac disease in may this year. Whilst I was in hospital a blood test was done but was normal, but because I am B12 deficient, folic acid deficient and have a serum iron count of 8 they done a endoscopy and concluded from biopsies that I have celiac disease. They also found an adrenal mass but said its not functioning so will just scan next year to see if it's grown.

Does anyone have any advice or experience regarding this. I have also read various literature on the internet stating that celiac can manifest as neurological problems. I am new to all this and would appreciate any input. I am following a strict gluten free diet and have been since my dx, I have improved but am unsure whether this is due to the diet or steroids I was put on (i'm taking fludrocortisone - for poss POTS and adrenal probs!!!).

I have not read the biopsy report and am awaiting a copy. My bowels are more or less back to normal now. Some of the symptoms I was experiencing were/are: chest pain, tachycardia, palpatations, t-wave inversion (all cardiac tests were fine, echo, stress echo, treadmill test), sweating, orthostatic intolerence, severe weakness, nausea, diahrrea, hypoglycemic episodes......

Kind Regards

Eve
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#2 trents

 
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Posted 02 August 2009 - 09:17 AM

B12 deficiency can cause neurological problems itself. How are your B12 and folic acid levels now? Are you getting B12 injections or taking folci acid supplements?
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#3 The Fluffy Assassin

 
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Posted 02 August 2009 - 12:21 PM

I have been suffering from autonomic dysfunction for 3 months now. 7 weeks of this was spent in hospital extremely unwell and the cause has not been found. They suspect the form I have to be postural orthostatic tachycardia syndrome (POTS). This can be an illness on its own or caused by something (secondary). On the wikpedia website it says that celiac has to be ruled out (amongst several others) before a diagnosis can be made. I was diagnosed with celiac disease in may this year. Whilst I was in hospital a blood test was done but was normal, but because I am B12 deficient, folic acid deficient and have a serum iron count of 8 they done a endoscopy and concluded from biopsies that I have celiac disease. They also found an adrenal mass but said its not functioning so will just scan next year to see if it's grown.

Does anyone have any advice or experience regarding this. I have also read various literature on the internet stating that celiac can manifest as neurological problems. I am new to all this and would appreciate any input. I am following a strict gluten free diet and have been since my dx, I have improved but am unsure whether this is due to the diet or steroids I was put on (i'm taking fludrocortisone - for poss POTS and adrenal probs!!!).

I have not read the biopsy report and am awaiting a copy. My bowels are more or less back to normal now. Some of the symptoms I was experiencing were/are: chest pain, tachycardia, palpatations, t-wave inversion (all cardiac tests were fine, echo, stress echo, treadmill test), sweating, orthostatic intolerence, severe weakness, nausea, diahrrea, hypoglycemic episodes......

Kind Regards

Eve

It certainly sounds reasonable. Though I've never had it called autonomic dysfunction, I've had many of the symptoms over the years, especially orthostatic hypotension. One thing to look out for: I continued having it after going gluten-free. Many celiacs suffer from other food sensitivities. I suspect that mine include casein (dairy). You may want to ask for a referral to an allergist for testing, or give up dairy to be on the safe side. Supposedly, up to half of celiacs are casein-sensitive. Regardless, welcome to the board, and I sincerely hope that you've found your answer.
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The fluffy assassin? My cat, Amelia. Just fluffy, really.
About '02, lactose intolerance hit. Quit gluten in late '07. Immediately had better energy, less anxiety.
By '09, no lactose intolerance, but I gave up dairy 7/18/09 anyway (and in August soy). Restarted dairy, Nov' '10; stopped for good, December.
9/12/09 Wound up in the emergency room with what turned out to be hypothyroid symptoms. Resolved quickly when I got my iodine levels up. If you're on a whole foods diet, make sure you get enough iodine. Believe me!
PS: Fluoridation sucks.
PPS: You might enjoy my blog, Writing When The Cat Lets Me.

#4 evo123

 
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Posted 03 August 2009 - 02:36 PM

B12 deficiency can cause neurological problems itself. How are your B12 and folic acid levels now? Are you getting B12 injections or taking folci acid supplements?



Hi Trents thank you for your reply.

My last check on B12 showed it was now 336. I have recieved B12 via injection and have been on folic acid for many months and my levels are near normal. I have also been taking ferritin for many months to.
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#5 evo123

 
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Posted 03 August 2009 - 02:54 PM

It certainly sounds reasonable. Though I've never had it called autonomic dysfunction, I've had many of the symptoms over the years, especially orthostatic hypotension. One thing to look out for: I continued having it after going gluten-free. Many celiacs suffer from other food sensitivities. I suspect that mine include casein (dairy). You may want to ask for a referral to an allergist for testing, or give up dairy to be on the safe side. Supposedly, up to half of celiacs are casein-sensitive. Regardless, welcome to the board, and I sincerely hope that you've found your answer.



Thank you for your post.

I suspected I had a issue with milk whilst in hospital, every morning I would try and eat some cereal and I ended up really nauseas, so I changed my breakfast and this improved. Now I am not having much dairy products at all. I will ask for testing to check for this. I did have allergy testing by a homeopath which involved touching a bottle and and if she recieved 'energy' from me a metal rod would move indicating to her whether I could tolerate the product or not. I am unsure whether this method was accurate!!!

Autonomic dysfunction is mainly catagorised as dysautonomia. This involves most bodily functions that are carried out automatically (heart rate, bp, temperature control, breathing, orthostatic intolerence, etc) by our autonomic nervous system. I am suspected as having POTS but my bp doesn't drop it actually rises!!! I am hoping gluten was causing these symptoms and that avoiding them (strictly) will help me.

I am enjoying exploring this board it is very helpful especially for the newlydiagnosed like me.
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#6 ENF

 
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Posted 03 August 2009 - 07:26 PM

Before I found out that I had Celiac, I thought that my dysautonomia was due to mitral valve prolapse (which I have), but I now believe that it's caused by years of undiagnosed celiac and the valve irregularities as well.

Fish oil supplements, magnesium, and calcium work well for me as a general treatment for my neurological problems.

I stopped eating dairy products made from cow's milk several years ago, but recently started having goat's milk products, and have had none of the problems that cow's milk gave me in the past. It's a whole different animal, lol.
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Celiac diagnosis from positive blood work & endoscope (2005)

Serologic equivalent: HLA-DQ 2,3 Subtype 2,8 (double Celiac genes)

#7 evo123

 
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Posted 04 August 2009 - 02:52 AM

Before I found out that I had Celiac, I thought that my dysautonomia was due to mitral valve prolapse (which I have), but I now believe that it's caused by years of undiagnosed celiac and the valve irregularities as well.

Fish oil supplements, magnesium, and calcium work well for me as a general treatment for my neurological problems.

I stopped eating dairy products made from cow's milk several years ago, but recently started having goat's milk products, and have had none of the problems that cow's milk gave me in the past. It's a whole different animal, lol.




Hi,

What symptoms did you have from dysautonomia? and do you still have them now?

I will try the supplements many thanks for your advice.
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#8 Roda

 
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Posted 04 August 2009 - 03:06 AM

I too have had issues with tachycardia, sob and a drop in bp when I stand up. The few cardiac tests I have had are normal. I believe this is related to my iron deficiency or low iron stores (ferritin) which I am exploring now as it can have side effects with or without anemia. I am now looking into trying to get an iron infusion to help with my symptoms. At one time I thought I might have POTS or innappropriate tachycardia before I found out about my low iron and celiac and am convinced that it is the latter.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#9 ENF

 
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Posted 04 August 2009 - 08:46 AM

Hi,

What symptoms did you have from dysautonomia? and do you still have them now? I will try the supplements many thanks for your advice.

When it was at it's worst, I had intense panic attacks with gastro problems that were way beyond what I thought was "IBS". I felt like I was going to have a heart attack, and feelings of impending doom as well. Cold sweating, heart palpitation, swings in BP, extreme fatigue and weakness were symptoms - even at bedtime. Most of these symptoms have been substantially reduced, and in come cases eliminated.

Another neurological symptom was a feeling of being stuck with pins, especially in my feet/toes, but also in other areas such as arms and hands. I believe that this was a neurological symptom of Celiac, as well. I've had this for as long as I can remember, and still do. I'm used to it and it's not a cause of extreme discomfort.

There were other problems, including almost constant anxiety.

I had very low Iron, and ferritin levels were zero. I am fortunate that my wife found out about Celiac about five years ago (the anemia was a tip-off), because until then we thought that the dysautonomia and gastro problems were a result only of Mitral Valve Prolapse Syndrome. I now know that it was both conditions.

Magnesium deficiency is very common in people with Mitral Valve Prolapse, and Celiac as well.

Gluten Intolerance expert Ron Hoggan, author of Dangerous Grains, uses magnesium for rebuilding bones, and recommends it as the most important supplement for Celiac Disease.
http://www.celiac.co...ggan/Page1.html
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Celiac diagnosis from positive blood work & endoscope (2005)

Serologic equivalent: HLA-DQ 2,3 Subtype 2,8 (double Celiac genes)

#10 ang1e0251

 
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Posted 04 August 2009 - 09:57 AM

I second the notion of magnesium. I didn't realize how important it was or how deficient I was until I read "The Miracle of Magnesium" by Dr. Carolyn Dean. I followed her advice and am seeing the benefits especially in my blood pressure.
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#11 evo123

 
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Posted 05 August 2009 - 02:56 PM

I too have had issues with tachycardia, sob and a drop in bp when I stand up. The few cardiac tests I have had are normal. I believe this is related to my iron deficiency or low iron stores (ferritin) which I am exploring now as it can have side effects with or without anemia. I am now looking into trying to get an iron infusion to help with my symptoms. At one time I thought I might have POTS or innappropriate tachycardia before I found out about my low iron and celiac and am convinced that it is the latter.



Thank you for your reply. I to am looking into the effects of low ferritin and have found many people who have suffered symptoms from this. My bp does not drop it actually rises extremely on standing, my symptoms included severe weakness to the extent I could not tolerate being upright for more than several minutes before my weakness increased and chest pains become worse - being made to be upright by A & E staff caused me to have a T - wave inversion, sweating, extreme nausea, dizziness and many more. Orthostatic intolerence is poorly understood even by many medical professionals. I am relieved that this symptom has eased greatly and hope that it does not reoccur.

Have your symptoms improved? I hope you have gained relief from them. x
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#12 evo123

 
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Posted 05 August 2009 - 03:08 PM

When it was at it's worst, I had intense panic attacks with gastro problems that were way beyond what I thought was "IBS". I felt like I was going to have a heart attack, and feelings of impending doom as well. Cold sweating, heart palpitation, swings in BP, extreme fatigue and weakness were symptoms - even at bedtime. Most of these symptoms have been substantially reduced, and in come cases eliminated.

Another neurological symptom was a feeling of being stuck with pins, especially in my feet/toes, but also in other areas such as arms and hands. I believe that this was a neurological symptom of Celiac, as well. I've had this for as long as I can remember, and still do. I'm used to it and it's not a cause of extreme discomfort.

There were other problems, including almost constant anxiety.

I had very low Iron, and ferritin levels were zero. I am fortunate that my wife found out about Celiac about five years ago (the anemia was a tip-off), because until then we thought that the dysautonomia and gastro problems were a result only of Mitral Valve Prolapse Syndrome. I now know that it was both conditions.

Magnesium deficiency is very common in people with Mitral Valve Prolapse, and Celiac as well.

Gluten Intolerance expert Ron Hoggan, author of Dangerous Grains, uses magnesium for rebuilding bones, and recommends it as the most important supplement for Celiac Disease.
http://www.celiac.co...ggan/Page1.html



I am glad your symptoms are less now when they were in full swing you must have suffered greatly. I am truly amazed at how gluten can effect our bodies it was something I never gave a thought to before I was diagnosed!! I will try to find out what my magnesium levels are and will consider taking theses as a supplement.

Thanks for the link I will read with interest.
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#13 trents

 
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Posted 06 August 2009 - 08:34 PM

Hi Trents thank you for your reply.

My last check on B12 showed it was now 336. I have recieved B12 via injection and have been on folic acid for many months and my levels are near normal. I have also been taking ferritin for many months to.



I would not expect this to be a problem since you are getting B12 injections but just for your information and future reference folic acid supplementation will mask B12 deficiency.
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#14 trents

 
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Posted 06 August 2009 - 08:47 PM

"Gluten Intolerance expert Ron Hoggan, author of Dangerous Grains, uses magnesium for rebuilding bones, and recommends it as the most important supplement for Celiac Disease."


Whenever I try Magnesium supplementation I get the runs. Finally figured out it is the active ingredient in Milk of Magnesia.
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#15 ang1e0251

 
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Posted 07 August 2009 - 04:23 AM

You could try the spray on magnesium oil.
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