• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
alesusy

Lifting The Veil: First Months

Rate this topic

Recommended Posts

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.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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!!!!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,915
    • Total Posts
      943,492
  • Member Statistics

    • Total Members
      67,090
    • Most Online
      3,093

    Newest Member
    Angie663
    Joined
  • Popular Now

  • Topics

  • Posts

    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
    • In many cases no.....I consume heavy magnesium foods like pumpkin seeds, cocoa nibs etc....and still need 2-3x the dose of magnesium recommendations. Going on more of what poster boy said. You dose magnesium to tolerance with citrate like Natural Vitality Calm you start off small partial doses and slow ramp up....it can hit you hard causing gas and D if you go to quick into it. You dose citrate to tolerance meaning you slowly up your dose til you get loose stools...then back down a bit. You should have vivid dreams with a good dosing....also if it becomes to harsh or you can not handle citrate there is Doctors Best Glycinate...it does not have the gut effects at all...but the dreams and how much it makes you relax is more more felt.   ...with this disease you can have a food intolerance or allergy crop up out of the blue....like no where. You have a autoimmune disease....celiac it effects your immune system and can make it really wonky. Like it seems to always be on guard like a sleep deprived sentry on stim packs...jumps at everything and shoots it. If you get sick, eat something odd or harsh you system might red flag it as a issue for awhile and go bonkers....keep a food diary and try a food rotation in the mean time...OH as a example to this, I was fine with chia seeds last week...I got a cold over the weekend....same bag, same brand same way....withing 30mins I now puke if I eat them...new intolerance.....I also am finding jalapenos/paprika making it sleepy tired....so I am removing them both for a few months from my diet and changing to other sources for fats/fiber and vitamin A/C til I get over that issue.....these things just happen. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Hi Isabel, Your body needs nutrients to grow.  Nutrients not absorbed well when we have celiac disease damage in our guts.   But, if you do a good job of avoiding gluten, the gut damage should heal and you will be able to absorb nutrients again. The thing to remember is celiac disease is an immune system reaction.  Immune reactions are very sensitive and just a tiny amount of gluten can get them going.   And they can last for months.  So it;s very important to avoid all gluten all the time, to keep the immune reaction down.  Keeping the immune reaction down keeps the damage down, and the healing can keep up. You may start to grow more if you can absorb nutrients better.  Some extra vitamin pills might be a good idea.  Your doctor should know.  
    • Thank you Gail for your response. Of course one should be mindful of the possibility of food allergies but I don't think that's the case with my current situations. Save for gluten containing product, everything I eat now I used to eat before with no reaction whatsoever. I think my issue is more likely to be deficiency in minerals and such.
  • Upcoming Events