Jump to content
  • 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

Lifting The Veil: First Months


alesusy

Recommended Posts

alesusy Explorer

I hope this will be useful to some recently dx. I've been dx on January 7th (biopsy results) but I stopped eating gluten on December 2nd right before my gastro. celiac disease symptoms can be elusive, and it is easy to forget how sick you felt. So this is a list of the things that are goin better after almost two months gluten-free.

During this time, I have had several problems, most of all right after New Year's eve and then again last week: gastro and bowels symptoms but also other problems: extreme fatigue, brain fog, depression, vision problems, and of course intestinal problems. I have not pinpointed why: I'm also lactose intolerant and perhaps an excess of lactose and too many sugary stuff sent my bowels in alarm mode again, but I don't think I had any gluten (not the second time; the first, yes). Anyway, it's useful because it reminds you: "THAT'S what I've been feeling like for months". And then you don't feel anymore like you're pretending and pampering yourself.

My best advice, which I'm picking up from other and more expert people, is to keep to a simple diet as much as possible and to limit processed foods in the first months. Rice, maize, quinoa, meat - cheese if you can - fish, vegetables, raw fruits. Simple stuff. I'm experimenting with what I can get away with (wine? bits of chocolate? homemade muffins? yeast? etc). However, when I am feeling ok, the improvement is very noticeable. Some improvements may come from the fact that I much more rested because I haven't been working these last weeks: I took unpaid leave. But I took it before the dx, because I could not STAND to work any longer. Here it is:

BRAIN FOG: this is to me the most important and the clearest indicator. I am much more alert, I wake up in the morning feeling human (ie: rested, more or less) and capable of thinking clearly. I can study, read, absorb things much more easily. Most of all, I recovered the ability to PLAN and the zest for things: I find I have one million projects of stuff I want to do, and I can see a path to do them. In the last months, planning and organizing things was very tiring and I did it hesitantly; I often did things that I KNEW I liked, but with no great joy and wondering why to put all these huge efforts (so they felt) in enterprises which I did not really enjoy after all, because it was so confusing and tiring (lessons, writing, reading, travelling...)

FATIGUE/ENERGY: I mean physical fatigue. I find myself doing every day a quantity of stuff (in and out, shopping, cooking, doing chores, studying, meeting people), much more than I could do before, and most of all, I reach dinner time and I am still not tired (whereas before I fighted with sleepiness and tiredness and a general feeling of I-can't-make-it all day long).

VISION. I am myopic, something totally apart from celiac disease. However I had been having difficulties in focussing and generally more blurry vision in the last few years, and my eye doctor insisted my vision was the same as before (she said after 40, your brain finds it more difficult to focus). Now - and it is not just wishful thinking - but apart from the episodes I quoted, my vision is clearer. more defined, etc (I can measure it for instance from the ability to read the lettering on posters around the house from the same positions)

JOINTS AND STIFFNESS - I had in November a whole month of headache, every single day. I then understood my jaw muscles were giving me terrible tension headaches. My dentist had given me a bite to wear at night like five years ago but I actually started wearing it only in the last months, and I could not understand why my jaws were suddenly locking up. Again: problem much better (although it's still sore in the morning but nothing like before)

BOWELS: of course. Apart from the episodes, immensely better (I have to be careful of lactose however or gas and gas pains crop up again; If I don't get lactose, I'm ok)

SKIN - I did not have DH. However (or am I dreaming?) my skin feels softer and more compact.

DEPRESSION, ANXIETY have lifted. I am, however, very emotional, often thinking of people I've lost, crying a lot: but it feels ok. I mean, I cry and then I get it over with and do something else. It feels almost as if I'm MORE emotional than before, more open as well. Which brings me to

LIBIDO - has anybody's else libido been perking up after going gluten-free? MIne definitly has. Since I have more energy, it's obvious but I guess also my brain receptors are working better in those areas as well.

I find I do not want to underline too much these things to people. First of all, how can I make them believe me? Secondly, I'm afraid it will all disappear and instead of improving more and more I will start going back. Better not to defy the gods. But here people will believe me - and they will understand.

a.


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



Celiac.com Sponsor (A8-M):



langone7 Apprentice

I have been off gluten for three months now. I have found in the first month, I had very bad withdrawals, i.e. all my symptoms of fatigue, bloating, etc. got much worse.

I have not found an increase in libido, it is still very low. I no longer have muscle pain; however, I still have bad gas. I have just developed a new kind of low grade bloating (I think I may be allergic to dairy, I will find out today). My fatigue too is better; I would say 70% of a normal person.

I regards to people not believing you, as you said earlier I think too people do not believe it because it is a fad. However, some people, such as people I know (in-laws) do not believe there is such a thing, in fact, they do not really even believe in food intolerances (weird), even though it is scientific; but they claim it is not. People just choose to believe what suits them, but if they truly care about you they will believe you.

I also can focus better, and find I get a lot more done at home, than I did before and no longer am I so tired that I have to stay in bed (nor have as much pain). I no longer get leg pain.

Cheers to your success! Keep up the gluten free life!!!!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,022
    • Most Online (within 30 mins)
      7,748

    Pesto
    Newest Member
    Pesto
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.