Celiac and autonomic disturbance

Has anyone any experience of celiac disease and autonomic disturbance?

On the wikipedia website it states that before a diagnosis of POTS (a form of autonomic dysfunction) can be made celiac disease (one of several conditions) has to be ruled out.  

I ask this as I have been really unwell now for several months and the only official diagnosis I have is celiac disease (an adrenal tumour is being investigated and so to is POTS).  I am B12 and folic acid deficient and have really low ferritin levels.

It would be a great help if anyone has any further information regarding this.

[evo123]

Hi just wondering if anyone has any experience of autonomic dysfunction caused through being celiac?

[Basktbal22k]

Yes it is entirely possible

Check out this site on POTS (considered an autonomic dysfunction) and Celiac Disease
http://www.celiac.com/gluten-free/lofiversion/index.php/t25205.html

[evo123]

Thank you for the link.

I have been gluten free now for 5 months and have seen some improvement in symptoms but I do still have many.  So time will tell for me to what extent celiac disease affected me and what symptoms are caused by something else.

[Basktbal22k]

I have read that it can take up to a year to see full improvement for Celiac Disease. I checked out your profile; I am experiencing many of the same symptoms as you. I have just been diagnosed with POTS and am now being tested for Celiac. I think it is important to have a biopsy done (through the mouth, not much pain) to see the impact the disease has had on your small intestine if this has not been done already. Equally as important is to make sure your daughters do not have the disease, as it is genetic. I am hoping I have celiac disease as this would explain my symptoms and allow me to start getting better (or at least not continue to get worse).

[Basktbal22k]

The adrenal tumor is also a cause for major concern, this could equally be your cause of symptoms. I hope an endocrinologist is helping you with this.

[evo123]

I feel for you, it is hard living with these symptoms on a daily basis.  My bloods that were taken to test for celiac were fine but an endoscopy showed that I have celiac disease.  We thought this was the answer, but then I tested positive for POTS on TTT and the tumour was found.  My urine tests for pheo came back negative so the endo was dismissive of this growth, but my cardio and Gp have their concerns.    

My uncle and cousins have this disease also but I have been told testing will not be done on my children unless symptoms appear.

I hope you get the answers you are looking for.  When reading about some of the effects of celiac disease I am shocked, it is not all gastro, which suprised me.

[Basktbal22k]

Tumors on the adrenal glands are not uncommon; never the less it should be watched with follow up scans if you are not already doing so. I recently had an appointment with a doctor who specializes in POTS who told me that she had a patient whose celiac disease was actually the root cause of her POTS.

I don't agree with the fact that your children must "wait for symptoms" to appear. From what I recall they are having various health issues already; at least they could have the simple blood test done as a guide. My reasons are as follows:

-blue sclera can be a common sign of iron deficiency (http://www.ncbi.nlm.nih.gov/pubmed/2878143). Iron deficiency can be a result of celiac disease

Celiac disease can cause such a widespread range of symptoms. I hope your doctors will agree to at least perform a simple blood test if you find that it is worthwhile.

[mersilkee]

I have celiac disease and before I was diagnosed with it, the doctor who diagnosed it looked at my history and said he believed that I had some autonomic symptoms because of Celiac disease.  I now have  other neurological symptoms but they are from a different illness and the symptoms are different.  These symptoms with the Celiac improved dramatically after I started following a strict gluten free diet.  I also had the same lab values as you mentioned as well as some others.
Best of luck to you

[silly_yack17]

I was so thankful to have stumbled upon this post!! I have been having very similar problems as you for about 9 months now. I too was running from doctor to doctor trying to figure out what was wrong, only to have them finally diagnose me with POTS. To me, this was an unacceptable diagnosis because I just knew there had to be a cause. I did countless hours of research and came up with a list things that I asked my doctor to test me for...one of which being celiac disease. I honestly did not think there was any chance I had celiac since I had NONE of the classic symptoms, ..but sure enough, the results came back and an endoscopy confirmed the diagnosis.  I have been off gluten now for a few months and I am feeling dramatically better!!! I still have occasional symptoms, but I feel almost 90% better!  

So, to answer your question.. yes! celiac can definitely cause POTS. My challenge now is to find a doctor who will take me seriously when I try to explain the connection. Currently they are all looking at me like I have 6 heads.  I wish I could gather all the people together who have had the same experiance and force them to believe us!!!

[cherlock12]

I too had the POTS symptoms and was diagnosed with orthostatic hypotension.  My heart rate races for no reason and I have other autonomic dysfunction.  Been sick for about 30 years on and off.  Diagnosed with fibromyaglia, Chronic Fatigue Syndrome, Mixed Connective Tissue Disease..and on and on.  Then a few months ago they diagnosed me with Celiac disease.  After reading these posts, I tend to believe these things are related and that my Celiac caused all kinds of damage to my body over those years.  It is too big a coincidence that so many with celiac have these problems too.