Didn't get better...finally an answer

[thleensd]

Looks like I haven't been on here for about 4 years...hoping the next chapter in my story will help someone along the way. 

I was diagnosed with celiac disease by biopsy in 2009 after a number of years of trouble. I carefully nixed gluten, then went paleo, then went on the Wahls Protocol - each with some improvement, but never enough to return to "normal". I was diagnosed with Chronic Fatigue Syndrome/ME and stopped looking for answers (other than continued reading, refinement and dietary adjustments). I was starting to do pretty well - traveled internationally, was starting to hike regularly when I became increasingly fatigued, dizzy, light-headed again...but mostly only in the morning. Symptoms crept later and later in the day until finally over the summer I really crashed. I felt like I was going to faint every time I stood up for more than a few minutes - it was scary, but familiar to pre-Celiac-diagnosis.

Interestingly enough, early on, most of my symptoms were neurological: ataxia, brain fog, memory problems, nerve pain, etc as well as debilitating fatigue. I had a few near-fainting experiences here and there, but it was attributed to malnourishment, low blood pressure, CFS, and yes..."anxiety". 

I found a new functional medicine doctor who led me down another research path...thyroid...no...adrenal fatigue... maybe, but no clinical markers. Then I found it - thanks to the internet (which I also attribute to finding celiac disease).

In addition to Celiac Disease, I have POTS. Postural Orthostatic Tachycardia Syndrome, a form of dysautonomia. In essence, for some reason (autoimmunity? low blood volume? general dysautonomia?) not enough blood pumps to our vital organs, so our hearts race to try to compensate when we stand up (sometimes when we sit up). Those are the main features, but, much like Celiac Disease, there are lists and lists of additional signs and symptoms. I found an expert (such as there are, there is no cure, only treatments - and it was only a named syndrome starting in 1993, so it's a young syndrome) and finally got an appointment last week. Now to start the long road of pharmaceuticals (ugh), lifestyle interventions, and anything else we can find so I can feel better. 

Here are the most troubling symptoms I went through that my doctors dismissed as "just CFS" or "Celiac complications":

Dizziness, lightheadedness, light and sound sensitivity, fatigue, cognitive dysfunction (brain fog) digestive disturbances, too much adrenaline (and not at appropriate times), and of course, an inappropriately high heart rate upon standing. I also had related issues (which are explained by the related diagnoses of Ehlers-Danlos Syndrome (hypermobile) and MCAD/MCAS (mast cell activation disorder/syndrome). Those included: joint and nerve pain, loose joints, chemical sensitivity, a history of chronic idiopathic urticaria (hives) and angioedema (swelling). Turns out that POTS has it's own little constellation cluster of illnesses that like to coexist with it: celiac disease, lupus, MS, sjogrens, EDS, Lyme Disease are some of the most common)

It turns out that Celiac Disease can trigger POTS! If you're having unexplained orthostatic intolerance in spite of not much change in blood pressure upon standing, check your heart rate. None of my doctors ever thought to check my standing heart rate, and the only irregularities were attributed to anxiety. 

Dysautonomia isn't fun. But, having a diagnosis can hopefully lead to some treatment options. 

Here's a great short video about POTS. 

 

 

[pavlovcat]

I'm glad you finally have some answers.  I've found that my heart seems to race after inappropriately small amounts of exertion (walking up the stairs) at times and I do frequently get the "head rush" feeling upon standing.  At this point I've been attributing it to lack of food since I've been sick for so long that many days I barely eat anything.

If I continue to have this symptom even one (Lord willing) my celiac symptoms have abated enough for me to eat adequate calories every day, I'll keep this in mind.

I do have a friend with POTS too and she's constantly getting monitored for other autoimmune disorders as well.

[ironictruth]

For mild cases of this keep your water and salt intake up. Not a drastic amount, but if your heart seems to be working overtime had a tbsp of gluten free soy sauce and a glass of water. 

[thleensd]

Not asking for advice. I've done thousands of hours of research on health in general - hundreds and hundreds in dysautonomia and POTS, I have a leading doctor, and am taking in 10 grams of salt per day (as recommended), and am not yet well enough to take care of myself, so I'll be starting medication soon.

It is frankly insultingly naive to suggest that a tablespoon of soy sauce could make me feel better.

 

[ironictruth]

1 hour ago, thleensd said:

Not asking for advice. I've done thousands of hours of research on health in general - hundreds and hundreds in dysautonomia and POTS, I have a leading doctor, and am taking in 10 grams of salt per day (as recommended), and am not yet well enough to take care of myself, so I'll be starting medication soon.

It is frankly insultingly naive to suggest that a tablespoon of soy sauce could make me feel better.

 

My apologies. You misunderstood. I said for "mild" cases. I only posted that because POTS has been found to be common in celiac. I thought it would be a helpful comment for those reading the thread who had not tried increasing salt/water and had a more mild form.

It was not meant to be directed to your case. I am not that naive. I know many times folks need meds. Sorry you have suffered so. 

[pikakegirl]

Thank you so much for sharing this. I am concerned due to the fact that I became ill and bedridden at 20 yes old. George Washington Hospital told me it was CFIDS. That was 1988. They missed Celiac which I was not diagnosed with until 2007. I have had all the symptoms of POTS and was diagnosed with SVT in 2006 before my Celiac was discovered. I have not seen a cardiologist since. I have been getting dizzy error upon standing and bending forward and have popping joints and nerve pain. I had never heard of this before and my physicians have given up on me. Over the years I have had many pharmaceuticals given to me for symptoms but pursuing a diagnosis is met with indifference from hundreds of doctors. I stopped all drugs except for thyroid control but live an isolated and housebound life. I am going to call a cardiologist today. Whether or not this is my issue I am grateful for the information since I am very alone in my pursuit of a quality life.

[thleensd]

I do appreciate your clarification, although I will say that if your POTS can be fixed by a tablespoon of soy sauce, it was not true POTS in the first place. Dysautonomia is a big deal. 

Sodium can help some with low blood volume or low blood pressure in some people, but let's not recklessly throw around advice. It's like saying a mild case of celiac can be cured by cutting back on gluten. 

[thleensd]

Pikakegirl - good luck with your cardiologist appointment. It's really amazing that we have to push so hard to get answers, but I hope you can find some more!

SVT isn't uncommon for people with POTS...they can certainly co-exist, but that often makes diagnosis challenging. Please make sure that you ask them to take your pulse and BP lying down and standing. I'm not sure how much you've looked into POTS, but in case it helps, the diagnostic criteria is a heart rate increase of 30 BPM when going from supine to standing (in absence of a large drop in BP). If BP drops, it might be orthostatic hypotension instead.

Also, the nerve pain and joint problems - have you looked in to Ehlers-Danlos Syndrome? Obviously there are many, many things that it could be, but EDS does tend to cluster with POTS (and often falls in to the "I was diagnosed with chronic fatigue which ALL of my symptoms are now attributed to" category). I was also diagnosed with that at the same time (hypermobile type)

[pikakegirl]

Thanks, I have been told CFIDS and then Fibromyalgia but in my 30 years of slowly finding Hashimotos, Celiac, endometriosis, severe neuralgia and MTHFR, I am not satisfied with the Dr's prescription of heavy side effect symptom modifying drugs and rest. Rest has not helped. I was bedridden for 4 years from my neuralgia and the drugs side effects causing more pain. Against the Dr's wishes I got off all medication and rehabbed myself. I luckily have acupressure and eastern medicine to help me survive. I truly believe in science but for probably a multitude of political reasons my Dr's don't exhaust diagnostic tools or have the time needed to spend with me. I was told it was stress when I had mononucleosis. Anxiety when I had Hashimotos. Bi-polar when I had celiac. Do you see the pattern. I don't know how I keep my confidence some days but I am nothing if not tenatious. It has saved my life. I have found an osteopathic cardiologist I see next Fri. Wish me luck.

[ironictruth]

32 minutes ago, thleensd said:

I do appreciate your clarification, although I will say that if your POTS can be fixed by a tablespoon of soy sauce, it was not true POTS in the first place. Dysautonomia is a big deal. 

Sodium can help some with low blood volume or low blood pressure in some people, but let's not recklessly throw around advice. It's like saying a mild case of celiac can be cured by cutting back on gluten. 

Yes. Agreed. Reckless use of language on my part. The sodium/salt recommendation is not a cure, but may help combat mild symptoms, just as a heating pad may help some exposed to gluten who have mild cramping as a result but certainly will not cure celiac. 

Best of luck. I will excuse myself now. 

[knitty kitty]

11 hours ago, thleensd said:

Not asking for advice. I've done thousands of hours of research on health in general - hundreds and hundreds in dysautonomia and POTS, I have a leading doctor, and am taking in 10 grams of salt per day (as recommended), and am not yet well enough to take care of myself, so I'll be starting medication soon.

 

Have you had any tests for vitamin deficiencies?  Do you take any vitamins regularly? 

You said you never felt "normal" after your Celiac diagnosis and upon an increase in activity level you felt worse, and your doctor blamed your symptoms to malnutrition.  Were those malnutrition issues ever addressed?  

You sound sadly resigned to taking pharmaceuticals.  Surely during your research you came across studies like these...

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Vitamins C and E, magnesium, iron, vitamin D and all the B vitamins, especially B 12, are commonly found in Celiac Disease.  Celiac Disease causes malabsorption.  Malabsorption results in malnutrition.  Even if you are on a meticulously gluten free diet, you can still develop deficiencies.

Open Original Shared Link

Open Original Shared Link

Many diseases caused by nutritional deficiencies have symptoms that are similar to what you're describing and manifest after a period of physical and emotional stress.  Many doctors are not familiar with nutritional deficiency symptoms today.  Perhaps they are accustomed to writing prescriptions to treat the symptoms. 

I do hope all your nutritional deficiencies were addressed.   I hope these articles may help the readers.  I hope you, and all of us, have success on our Celiac journey.

 

[Posterboy]

thleensd,

If you have POTS you should look into Magnesium.

Here is a thread started by Ennis_Tx that talks about some of it's many benefits.

Also see this link from the affibers.org website that mentions specifically Magnesium Taurate's role in arrhythymia's.

Open Original Shared Link

I also recommend trying some some Niacinamide and/or a 100 B-complex 3/day. 

B vitamins help us manage our stress.

If it (Niacinamide) or the B-100 or B-50  causes you to burp in 2 or 3 months (which has Niacinamide in them) then your symptom's could be caused by co-morbid pellagra.

Knitty Kitty has given you good advice as well since Celiac's are low in many nutrient's often.

Here is my blog post that explains what I believe happened to me.

I hope it helps you thleensd the way it did me.

Take a B-complex for couple months to see if it helps.

Frequency is more important than the amount.

2x day of of a b-complex will allow your serum levels to stay high throughout the day helping you recover 2x as fast as once a day.  Do the same with Magnesium Glycinate or Magnesium Taurate  (2 to 3 times a day in divided doses) and I think your fatigue will greatly improve or at least your energy levels will increase greatly.

I hope this is helpful.

****this is not  medical advice only some of the things I did to help myself.

I am too sharing in hopes that other people will hear my story and believe . . .

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

posterboy by the grace of God,