advice needed 2 months in... struggling with symptoms

[aperlo34]

Hi everyone,

29 years old, got my diagnosis in September. This has been the longest 2 months of my life. This was my first real dx and I wasn't having much for symptoms before (1x bad constipation, irregular BM schedule). I struggle with pretty bad health anxiety and I've been freaking out pretty consistently for 4+months (when I was told I needed a colonoscopy). 

Basically since the colonoscopy was ordered in July, I started having small muscle twitching all over - this comes and goes but it's about 1 or 2 twitches every minute or so. I've also been super active this summer, riding 4k miles on my bike and accidentally losing 20lbs which I didn't really need to do. Since gluten free I've been all over the place diet/fitness/sleep wise and have had all sorts of weird symptoms:

• muscle twitching since July
• sinus(?) headaches since September
• extremely tired since October
• Dry eyes for the last 2 weeks
• worsening headaches in the morning especially and in the back of head/sinus area
• stiffness in body/neck/hands/joints
• general shakiness/weakness

Vitamins levels from last week:

• Magnesium 2.3 (ref 1.6-2.3)
• B12 406 (ref 232-1245)
• Vit D 43.6 (ref 40-100)
• Folate 11.4
• Glucose 84 (ref 70-99)
• Ferritin 117 (ref 30-400)
• Iron Sat 48 (ref 15-55)

It's hard for me to know what is and isn't celiac related, and every rabbit hole I go down online leads me to horrible places. I'm just hoping there is some sort of light at the tunnel and that one day I'm going to feel better. I felt great until this diagnosis (as far as I could tell). Does anyone have any experience being relatively asymptomatic and then feeling like complete trash after gluten-free? 

 

Thank you so much.

[cristiana]

Hi @aperlo34

Welcome to the forum.

I am so sorry to read that you have been going through all of this.   

Firstly, I should say that your experience of anxiety is very common, and also, the worsening of symptoms is also something we see reported quite a lot on this forum.  Achy joints, twitching as you describe and other symptoms were things I had and they all seemed to worsen for a while before they got better. 

I am a coeliac based in the UK and here, unless we are extremely fortunate or pay for private treatment, we are tested for very few deficiencies - my iron was low, my B12 borderline normal and vitamin D borderline normal, but I have absolutely no doubt in my mind that had I had the full spectrum of vitamins and minerals tested, it would have shown deficiencies.  Your test reveals normal levels but it could well be you are lacking in something not on that list.

My nutritionist at the time put me onto a broad spectrum supplement of every vitamin and mineral under the sun for a few months, until my GP said she thought there was too much Vitamin A in the pill so told me to stop taking it!  But one thing you could do is to take something similar which will address any deficiencies you are unaware of.  

I would say one Vitamin which you could should supplement is Vitamin D.   Your lab reports show you are borderline normal, I'd say there is quite a lot of room for improvement there.   Symptoms of deficiency/low levels include:  Muscle pain, Bone pain, Increased sensitivity to pain, A tingly, “pins-and-needles” sensation in the hands or feet, Muscle weakness in body parts near the trunk of the body, such as the upper arms or thighs, Muscle twitches or tremors, Muscle spasms (source: https://www.yalemedicine.org/conditions/vitamin-d-deficiency)

When I first joined this forum ten years ago or so, I found myself in the company of a lot of people complaining of twitches and spasms, and others who shared that it took a few months to clear (disappointing, but realistic!) which gave me hope that what I was encountering was temporary.  And indeed it was ...  it took a while but things did get better.

As I mentioned earlier, anxiety is problem for many newly diagnosed coeliacs and when adrenaline is running through you it can exacerbate or even cause twitching and spasms.  This happened to me, my eyes twitched, my calves twitched etc. 

Trying to understand the anxiety and what to do about it, I bought these two publications.  They helped me no end, and they may help you.

https://www.amazon.co.uk/Depression-Cure-Six-Step-Programme-Without/dp/0091929814

(Yes, it says depression, but this book helps with anxiety, too, through physical exercise,  omega-3 fatty acids,  natural sunlight exposure,  restorative sleep, social connectedness and meaningful, engaging activity)

https://anxietynomore.co.uk/product/at-last-a-life/

(Note, there is a lot of help on the anxietynomore website).

So aside from the anxiety, the other thing you need to do is to keep away from gluten.  This will help you.

I apologise for all the reading you have to do, but hopefully something will help.

Lastly, did they test you for any thyroid issues, to which some coeliacs can be prone?

Do come back to us if we can help further, and remember, there is a good chance that what you are experiencing is temporary.😊

Cristiana

[trents]

 

Welcome to the forum, @aperlo34!

You said you had a colonoscopy "ordered" in July? Has that procedure happened yet? A colonoscopy cannot be used to diagnose celiac disease so I assume the order for the colonoscopy is to check for something else. The procedure used to diagnose celiac disease is the endoscopy. So, I assume you have had blood antibody testing done and it was positive and then you had an endoscopy/biopsy done to confirm those results? That is the normal process for diagnosing celiac disease.

Have your constipation/irregularity problems improved since going gluten free?

Some of the continuing symptoms you describe would seem to fall into the category of neurological effects (muscle twitching, shakiness, weakness and headaches) and others such as dry eyes, fatigue, stiffness and joint aches sound like they could be autoimmune effects.

Are you taking any high potency to vitamin and mineral supplements? Celiac disease often/typically results in vitamin and mineral deficiencies due to malabsorption from the damage to the small bowel lining it causes. I note that your vitamin D levels are barely within normal range and the only B vitamin testes is B12. The B vitamins and D3 are very important to neurological health. And the several B vitamins all work together synergistically. So, they all need to be up to snuff, not just B12. I would suggest starting on D3 supplementation in the amount of about 5000 IU daily and also a high potency B-complex. Costco's Nature Made and Kirkland brand products are good quality and priced well and usually gluten free (and will state so on the packaging). Realize also that gluten free flours and facsimile foods are not fortified as are their FDA mandated gluten equivalents. So, when you cut out gluten, you cut out a significant source of vitamins.

One thing to be aware of is that Celiac disease is an autoimmune disorder and autoimmune disorders tend to cluster. That is, when you have one you there is a good chance you will develop others in time. I don't wish to alarm you because I know you have said you already struggle with heath anxiety but many of your symptoms make me think you have some other autoimmune condition going on in addition to celiac disease. Have you been checked for Sjogren's or lupus for instance? 

Finally, I am including an article that is helpful to newly diagnosed celiacs in getting a head start on the learning curve of eating gluten free: 

 

[Wheatwacked]

 

Micronutrient Inadequacies in the US Population

"A US national survey, NHANES 2007-2010, which surveyed 16,444 individuals four years and older, reported a high prevalence of inadequacies for multiple micronutrients (see Table 1). Specifically, 94.3% of the US population do not meet the daily requirement for vitamin D, 88.5% for vitamin E, 52.2% for magnesium, 44.1% for calcium, 43.0% for vitamin A, and 38.9% for vitamin C. For the nutrients in which a requirement has not been set, 100% of the population had intakes lower than the AI for potassium, 91.7% for choline, and 66.9% for vitamin K. The prevalence of inadequacies was low for all of the B vitamins and several minerals, including copper, iron, phosphorus, selenium, sodium, and zinc (see Table 1). Moreover, more than 97% of the population had excessive intakes of sodium, defined as daily intakes greater than the age-specific UL"

My Supplements:

• Vitamin D 10,000 IU (250 mcg)
• DHEA 100 mg  (Dehydroepiandrosterone (DHEA) levels in the body decrease steadily with age, reaching 10–20% of young adult levels by age 70. DHEA is a hormone produced by the adrenal glands that the body uses to create androgens and estrogens.)
• 500 mcg Iodine 10 drops of Liquid Iodine
• B1 Thiamin 250 mg
• B2 Riboflavin 100 mg
• B3 Nicotinic Acid 500 mg
• B5 Pantothenice Acid 500 mg
• Vitamin C 500 mg
• Selenium twice a week 200 mcg