Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

So Sick, I Don't Know If I Can Make It


dennymel

Recommended Posts

dennymel Rookie

Fellow Celiacs,

I have been recently diagnosed with gluten sensitivity on Enterolab. Today, I have no idea what I did, but I am so fatigued, exhausted, head ache and can barely think. I wonder, is it only the gluten, can it get this bad overnight? No bathroom issues, but muscle, joint, face aches and pure exhaustion. I don't know how I keep a fast paced job when I really just want to lay down. anyone have these symptoms this bad? How long do they last if I mistakenly glutened myself? Arrrgggghhhh.....


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Were you feeling better on the gluten-free diet? Or did this come on suddenly after a possible glutening?

I got somewhat better, but only my digestive symptoms improved. The rest of them did not get better and I just found out (finally) last week that they're from Lyme Disease .... so you CAN have gluten intolerance AND something else going on.

super-sally888 Contributor

Hi,

Is this all of a sudden to feel this bad?

Maybe you got a virus or a flu coming on..... unless this is how you normally react to gluten.

Have you had your thyroid checked? Your symptoms could be from that - though not usual for it to happen all of a sudden.

Or could you be pregnant? (sorry, I don't know if you are man or woman from your name).

Sally

dennymel Rookie
Hi,

Is this all of a sudden to feel this bad?

Maybe you got a virus or a flu coming on..... unless this is how you normally react to gluten.

Have you had your thyroid checked? Your symptoms could be from that - though not usual for it to happen all of a sudden.

Or could you be pregnant? (sorry, I don't know if you are man or woman from your name).

Sally

Hi Sally,

I am a woman, not pregnant. I've had my thyroid checked several times and it appears normal. I am getting over a cold and do have my "." right now. maybe that's it. The symptoms are a little better today, after I slept 10 hours straight. I have been feeling better on a gluten free diet and don't know what I might have eaten over the weekend. Maybe eating out is just too hard to monitor. Do you eat out a lot?

Denise

CarlaB Enthusiast

Eating out is always risky ... to lower the risk, I only eat at places that have a gluten-free menu because they're better prepared to handle contamination issues.

Here's an example. My son worked at a tea shop that serves lunch food. The salads seemed gluten-free .... however, only because he works there, I know that they make the salads at the same station as the sandwiches since they use many of the same ingredients for both. He said there was NO WAY I could get a gluten-free salad there even though they appeared to be gluten-free on the menu.

So, just ordering something that looks safe isn't good enough ... it may still be contaminated because of the way it's prepared. Sometimes people even get glutened at restaurants that have a gluten-free menu. It's just a risk we take eating out.

celiacgirls Apprentice

I am one of those who has been glutened at a restaurant with a gluten-free menu. More than once. If you've been eating out and are having a reaction, it more than likely comes from the restaurant.

My reactions have become much more severe since I went gluten-free or maybe I am just more aware of feeling depressed and tired than before so it seems worse. I do have a slight stomach ache at the time of glutening sometimes but my main symptoms are brain fog, fatigue, and irritablity. Luckily, I am a stay at home mom, so I can just lay down if I really need to. I can only imagine what it would be like having to function at a high level at work.

For me, it gradually gets better but the last time it took 2 1/2 weeks. It's enough to make me dread eating in a restaurant. I never thought I would be one of those people who is afraid to eat in restaurants but it happened. On the bright side, it is worth it to feel good. I hope you get better soon.

GFBetsy Rookie
Hi Sally,

I am a woman, not pregnant. I've had my thyroid checked several times and it appears normal. I am getting over a cold and do have my "." right now. maybe that's it. The symptoms are a little better today, after I slept 10 hours straight. I have been feeling better on a gluten free diet and don't know what I might have eaten over the weekend. Maybe eating out is just too hard to monitor. Do you eat out a lot?

Denise

My guess would be the flu. Aches and a cough are both flu symptoms, and it is that time of year.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,929
    • Most Online (within 30 mins)
      7,748

    Robert Osborne
    Newest Member
    Robert Osborne
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I've been using a Brita water filter for well over a decade without any issues. I seriously doubt that these water filter companies would use glues that would end up in your water, as that would be counter to what they are trying to do, which is to purify tap water. Please provide some specific evidence to back this claim up, as such speculation can cause undo fear, as well as reputational damage to these companies. Don't get me wrong here, I am not saying that this isn't possible, but is very unlikely.
    • 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:   
    • Scott Adams
      This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • 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
×
×
  • Create New...