Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Can Celiac Cause Dysautonomia
0

23 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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?

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites

"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.

0

Share this post


Link to post
Share on other sites

You could try the spray on magnesium oil.

0

Share this post


Link to post
Share on other sites
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?

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites
"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.

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,145
    • Total Posts
      919,571
  • Topics

  • Posts

    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,177
    • Most Online
      1,763

    Newest Member
    lolobaggins
    Joined