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
      131,488
    • Most Online (within 30 mins)
      7,748

    MimiD
    Newest Member
    MimiD
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • RMJ
      The incidence of autoimmune diseases in general, including celiac disease, has increased.  There are various theories as to why. The environment we live in, diet we eat, toxins we’re exposed to, stress levels, activity levels and infectious diseases to which we are exposed are all quite different now. A robust immune system that would have been an advantage thousands of years ago may be a bit too robust for modern life.
    • knitty kitty
      @Celiac50, Most Celiac patients with a Marsh score as high as yours are more likely to suffer from fat malabsorption and deficiency in fat soluble vitamins, Vitamins A, D, E, and K.   Vitamin A toxicity does not cause Celiac disease.  Your Vitamin A toxicity was probably developed after your diagnosis and subsequent over-supplementation.  Fish contains thiaminases, chemical compounds that destroy thiamine, Vitamin B 1, making the thiamine unusable.  Excessive intake of foods containing thiaminases can precipitate low thiamine.   Low thiamine can also be a result of bacterial or yeast infections.  A high carbohydrate diet encourages Candida and bacterial infections.  High carbohydrate diets promote SIBO and Candida because they feed on the excess carbohydrates and suppress the beneficial bacteria.  Other types of bacteria can take advantage of this and set up housekeeping outside the gastrointestinal tract, including bacterial vaginosis. Thiamine Vitamin B 1 can alter the microbiome.  Thiamine has been shown to suppress Candida, SIBO, and other bacterial and viral infections, and favor the growth of beneficial bacteria.  My SIBO cleared once I supplemented with Benfotiamine, a form of thiamine that has been shown to promote intestinal healing, and a B Complex.  Thiamine works in concert with the other B vitamins and magnesium. Thiamine helps to lower histamine levels by calming mast cells that release histamine at the slightest provocation.   Following the Autoimmune Protocol diet also helped immensely in getting my digestive system calmed and able to tolerate more foods. Have you discussed with your doctor and dietician supplementing essential B vitamins while healing?  What is your Vitamin D level?  Vitamin D helps calm the immune system.  
    • cristiana
      Update - my Active B12 is 36.  Apparently lab results between 25 and 70 suggest a possible deficiency, anything below 25 is a confirmed deficiency, above 70 is normal.   I am thinking this could be the explanation for my elevated MCHC. Anyway, yet again I find myself bumping along the levels of low normal by British NHS standards, which isn't great, because from what I understand, in the UK our normal levels are set low and 'lower normal' levels would be considered a deficiency in such countries as Germany and Japan. Regarding B12 levels, it doesn't look as if my levels are low enough to be offered B12 injections.  That being the case, I remember reading that sublingual tablets can still be very effective but one particular type is better than another - I can't remember which type.  Can anyone help?
    • cristiana
      Hi @Celiac50 If you are after a vitamin A test - sorry - I'm tired so not sure if I'm reading this correctly - perhaps you could try a home test?  I'm in the UK and am currently a bit perplexed about my own vitamin issue and thinking of going to a private lab for tests.  My issues is suboptimal Active B12 (only 11 marks off deficient) but no health professionals seem to be taking any interest in it although this is  my fault as last time I saw my Consultant I failed to mention my symptoms - I had so many other questions to ask him.  Anyway - here are the details for an A test: https://www.medichecks.com/products/vitamin-a-retinol-blood-test?gad_source=1&gad_campaignid=11996732820&gbraid=0AAAAAD9XHFyeAOrxlryOpWS_jXwZ8PCc1&gclid=EAIaIQobChMIyrjj2Pb2jwMVnJJQBh22CTkVEAAYASAAEgIGDPD_BwE
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
×
×
  • 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.