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Can Celiac Cause Dysautonomia
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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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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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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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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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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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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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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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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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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.com/articles/640/1/Magne...ggan/Page1.html

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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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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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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.com/articles/640/1/Magne...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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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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"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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You could try the spray on magnesium oil.

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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.

My doctor wants me to hold off the B12 injections now and see if my level holds. If I have been taking folic acid for about 6 months would that effect the b12 results, would they appear higher on testing?

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Good question and I don't know the exact answer but I do know folic acid is water soluble. I would think it would be leached from the system rather quickly. That's why you don't have to be as careful with water soluble vitamin supplementation as you do fat soluble vitamin supplementation because the water soluble ones don't remain behind in the body's tissues. I would still ask your doctor or a professional dietician or a naturopathic physician for a definitive answer. Can anyone out there shed light on this question?

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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

I have almost IDENTICAL symptoms to you!!!!! I am so glad to know I am not the only one. I have held the belief that celiac was causing my problems but no doctor has been able to confirm that. Please e-mail me to talk--I would love to hear from you!!! (taraweaver32@yahoo.com)

~Tara

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"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.

Zinc, Calcium, and Vitamin D are all critical for metabolism of Magnesium, especially Calcium. Try a combined supplement.

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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

My heart palpitations and tachycardia are directly tied to a combination of a soy allergy which developed secondary to presentation of celiac disease symptoms and the actual reaction I have to gluten itself. The very last cardiac test I had done (prior to my celiac disease diagnosis) was another full stress test with the dye injection and gamma radiation timelapse bloodflow imaging. Everything (once again) came out normal. Since going completely gluten and soy free (including soy lecithin) I have had not a single cardiac related abnormality. My last checkup had my BP completely normal (standing, resting, and sitting) and my resting heartrate was a nice even 67. At one point it was 90.

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I was diagnosed with Primary Dysautonomia (Idiopathic Orthostatic Hypotension) first, it was a huge battle. I wonder if the Celiac and Dysautonomia are directly connected?

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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I, too have orthostatic intolerance. It and my severe brain fog are my major symptoms. I've been on an elimination diet (nothing but rice/olive oil/grilled chicken) for 5 days now but things seem steady or possibly worse. I think it could be gluten/casein withdrawal.

Anyone here successfully conquer their orthostatic symptoms by eliminating certain foods?

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Hm...I get very dizzy upon standing at least once a day, but I have absurdly high iron (serum ferritin in the 250s--I'm waiting for a phlebotomy). I'll look into this further, but I'd love to know if its a celiac thing.

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    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
    • Annual celiac antibody testing is, in my opinion (and based on what celiac researchers have published), is critical, especially for a 12 year old.  Life is going to get harder for her.  Peer pressure is huge (I have a 15 year old daughter), and remaining diet compliant can be tough.   In Dr. Fasano's, Gluten Freedom, he discusses a young patient who became ill in high school after being gluten free for years.  His parents were perplexed.  Dr. Fasano took the young man aside and he confessed that while on a date, he didn't want to bring up his celiac disease.  So, he ate pizza.  He was too embarrassed to tell his parents.   My daughter does not have celiac disease.  She was first tested two years ago.  Since she is symptom free, is not anemic and her other lab work is fine, we'll wait to test her in another year.  It all depends on the patient, but every few years, testing is recommended for all undiagnosed first-degree relatives.   It certainly sounds like your younger children should be screened.   I wish you both well!      
    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
    • I'm sure going to have a long talk with my doctor.  Then I'll find a new one that will support me and make sure that my daughter and I both have the proper testing done yearly.  
    • also:  glutendude - i don't get it.  shouldn't it be glutenfreedude?  lolz i eat out few and far between.  most of the times i've been glutened it's been eating out.  this weekend i'm getting my bacon cheeseburger on at red robin  i always get my 'good' waitress - lucky, i guess, paula takes good care of me   and i will eat at bonefish but they have a limited 'safe' menu.  look for places that have the 'GiG'  training they know their stuff.  mellow mushroom, melting pot, california pizza kitchen, pf changs are all supposed to be trained that way.  they know to avoid cc and change their gloves, etc.  
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