Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Nearly Two Months Gluten Free - Feeling Worse :(
0

6 posts in this topic

So the very first time I went gluten free was the best week of my life. I felt energised, happy, motivated and so so HEALTHY.

 

Then, my doctor told me I had to eat gluten prior to my endoscopy, so I ate pastas, bread, pies etc. three meals a day for five days prior to my operation. I'm really angry with my doctor because I didn't realise that I wouldn't have to do that if I was planning on getting the endoscopy within three months (because it takes that long for any damage to heal).

 

Anyway, I get diagnosed with Celiac Disease and go back to my gluten free diet. It has nearly been two months since then, and there has been no improvement whatsoever. I'm back to being moody, depressed, unmotivated, weak, tired, bloated, farty, pimply, and I even have issues that I never had before like extreme diarrhea.

 

Has anyone had any experience with going on a gluten challenge after initially being gluten free? I think it's a bit different to being glutened, because usually when you get glutened it's just a small amount so you recover quite quickly. But what about when you purposefully ingest a large amount of gluten over five days? When can I expect to feel better??? Please reply :)

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi Kates77, I really do understand ... last October I had positive blood tests for celiac so I went gluten free for about 4 weeks (i felt fantastic) but unbeknown to me, I had to have an endoscopy so i had to re-introduce gluten. My endoscopy date got changed twice so I had a miserable christmas as I was trying to hold out until the endoscopy date on 4th Jan. Anyway, in the end they stopped procedure as I was trying to pull tube out but recently confirmed dx due to gene test etc.

For the first 3 months gluten free I was really miserable, spacey, no energy, brain fog, grouchy tummy, flu type symptoms much worse than ever before. I did have a drastic improvement in my vision and itchy scalp within the first 4 weeks but that was all.

I'm now finally starting to see improvements but boy i really know it when ive been glutened. Along the past few months Ive discovered other food intolerances like soy, coffee and dairy and im keeping up with my vitamins, probiotics and digestive enzymes so maybe im now heading in the right direction :) . Have a look at the newbie101 thread.

I've just come back from a mad 80s fancydress weekend and my energy levels kept up with the rest of them :) . I even braved the gluten free food on offer as there was one chef who seemed really keen and knowledgeble to get it right. Infact, when I got home I glutened myself !!

Also, I don't think at first, I was taking it serious about cross contamination, but have since learnt I must be sensitive afterall.

It takes time and patience and they'll be ups and downs but eventually (Im hoping), they'll be more ups !

Good luck

Edited ..to correct my silly spelling mistakes!!

Edited again... just realised, when I mentioned about me braving the gluten free food in a restaurant. That is NOT good advice, please avoid eating out if you possibly can. Try to get used to making your own food (simple wholefood ingredients).

0

Share this post


Link to post
Share on other sites

What was that about doctors pledging to do no harm?  Anyway, I'm really sorry you guys.  My thinking is that you can heal faster with a super pure diet of produce and unprocessed meats and then add those other foods after you are feeling better.  Keep a food/symptom journal and you should be able to notice additional food intolerances too.  Also as mentioned above, you can eliminate soy and dairy during this time.  You can try adding them back later.  Hopefully with a really good diet, you can get better in a couple of weeks.  I am one of those super sensitives, and that works for me.  I am now able to eat diary and my only other food intolerance is oats.  I hope that you feel better soon.

 

One great thing is that you know that you responded to the gluten-free diet initially, so that you know that you are on the right track.

0

Share this post


Link to post
Share on other sites

Hi Kates77,

 

People do tend to become more sensitive after they have been gluten-free for a while.  You may need to really look close at everything you are taking in, including vitamins and meds, drinks and anything else.   Getting better may take some real basic simple foods for a while.  No or very little processed food can help.  Low sugar and low carbs too.  Recovery from celiac disease damage can be more like a marathon than a sprint.  It takes times and constant vigilance until you get it down.  But recovery is a nice thing when it happens.  So keep going! :)

0

Share this post


Link to post
Share on other sites

Thanks guys! I really appreciate the advice. Hopefully I feel better soon :) And good luck to you all on your Gluten-Free journeys :)

0

Share this post


Link to post
Share on other sites




So the very first time I went gluten free was the best week of my life. I felt energised, happy, motivated and so so HEALTHY.

 

Then, my doctor told me I had to eat gluten prior to my endoscopy, so I ate pastas, bread, pies etc. three meals a day for five days prior to my operation. I'm really angry with my doctor because I didn't realise that I wouldn't have to do that if I was planning on getting the endoscopy within three months (because it takes that long for any damage to heal).

 

Anyway, I get diagnosed with Celiac Disease and go back to my gluten free diet. It has nearly been two months since then, and there has been no improvement whatsoever. I'm back to being moody, depressed, unmotivated, weak, tired, bloated, farty, pimply, and I even have issues that I never had before like extreme diarrhea.

 

Has anyone had any experience with going on a gluten challenge after initially being gluten free? I think it's a bit different to being glutened, because usually when you get glutened it's just a small amount so you recover quite quickly. But what about when you purposefully ingest a large amount of gluten over five days? When can I expect to feel better??? Please reply :)

Oh goodness. I am so sorry to hear that! I am however glad to see your post as I am experiencing a very similar thing. My difference is that I have been gluten free for almost 3 weeks and I am feeling worse and worse but same symptoms as you. I just want to go eat some real good bread and say "to heck with it" just to feel normal again.

 

Please let me know if I can be of any support for you! 

0

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
      104,642
    • Total Posts
      921,566
  • Topics

  • Posts

    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     
    • So far dairy seems to be OK, as are eggs. I like canned chickpeas so will carry on with those. Beans I had ruled out at one point with the doctor's recommendation to go with the low FODMAPs diet but will reintroduce those now I know it probably wasn't that causing the problems.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,647
    • Most Online
      3,093

    Newest Member
    iFitCeliac
    Joined