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

First Week Dealing With Celiac Disease
0

8 posts in this topic

Hello all,

First off, I'm new to message boards but was encouraged by my wife to join one for support so here I am. Three weeks ago my blood work was 98 and I'm anemic to boot. I was experiencing bloating, abdominal pain, headaches, nausea, fatigue.....just overall awful. I started a gluten free diet after I received the blood results and immediately started to feel better. I have since been diagnosed with Celiac (1 week ago today) after the results of my endoscopy were available. I've had issues for about 4-5 years but how I was treated by most GPs is a topic for another day.

My wife has been a fantastic support as our whole house has gone gluten free (toaster is gone, old frying pans, any condiments that could have been in contact...a clean sweep). As an aside, we're still waiting for my 3 children to receive their test results (9 year old girl, 7 year old boy and 3 year old boy).

My question is this....I immediately felt better but have since slid back to feeling lousy. I should clarify, the fatigue and nausea are back but the bloating and abdominal issues are much better. I've removed dairy as well and I'm following the recommended dietary supplements. Should I expect a continued roller coaster until my body has healed?

Mike

0

Share this post


Link to post
Share on other sites


Ads by Google:

That's great you are feeling better... mostly. For some, like myself, the first few weeks are tough because some go through a withdrawl of sorts; I remember being incredibly grumpy, tired, grumpy, very headachey, and grumpy. It wasn't fun... my family is lucky to have survived me. ;) Like you, during that time, my GI issues and migraines mostly resolved, but other symptoms took a while longer to improve. Others find that it can take a year for some issues to resolve themselves... this disease truly tests our patience.

Some discover other food intolerances that were less obvious while we were dealing with the gluten. Many celiacs have issues with lactose, and less commonly casein, as well as soy, corn, rice or even nightshade sensitivities. A food diary can be helpful to try and find out if any of these other foods are bothering you.

If some symptoms don't resolve, you might want to check yourself for other deficiencies. Many celiac are low in ferritin (as you know), B12, D, calcium and others. I'm afraid I don't know them all as i was lucky and escaped having other deficiencies. Also, many celiacs find they have thyroid problems which can cause some GI symptoms as well as the fatigue. For example, my fatigue and "C" did not improve at all until my thyroid was treated properly. If you need your thyroid checked, tests to request are TSH, free T4, free T3, TPO Ab.

Good luck! I hope you feel 100% soon. :)

0

Share this post


Link to post
Share on other sites

Hi Mike,

Welcome to the forum. :) Since you are new to forums be sure to watch out for those weird little yellow guys that pop up sometimes. They are always hanging around and smiling at people. Especially newbies! :D

One week is a start on gluten-free eating. But healing can take a while, months or years in some cases. The autoimmune process doesn't stop on a dime, so damage can continue for a while even after you have stopped eating gluten. And it can kick off again when you ingest even a small amount of gluten in the future. And that tends to happen pretty often for new people, as they learn to adjust their eating habits and not trust foods they had eaten safely in the past. Honestly it is just plain easy to forget about gluten sometimes when you are new to the diet. And gluten tends to be in many foods that people don't think of possibly containing gluten too. So it is easy to make mistakes.

Eating a whole foods diet is a good way to start out. Whole foods are things like whole vegetables, meats, fruits etc. Processed foods like breads, cookies, TV dinners etc are usually loaded with ingredients besides the main food and sometimes they are gluten containing ingredients. It can save a lot of time in the grocery store not buying the processed foods by not having to analyze those long ingredients lists. Processed foods also can contain food colorings and preservatives that some people react to. After a while eating whole foods you may start recognizing your bodies reactions to foods more clearly. When you eat 100's of food ingredients each week it can be confusing what is causing a problem. But when you simplify it to 20 or less foods it becomes more obvious.

So a simple whole foods diet can help in several ways. Anyhow, welcome to the forum again. Oh oh, watch out, I think I see a another yellow guy! :)

1

Share this post


Link to post
Share on other sites

Welcome!!! If you read a lot of other posts on here you'll seem to find that most of us had a "roller coaster" period when we first started out being gluten free. It seems that our body needs to adjust to not having gluten in it and I know personally that I had brain fog, fatigue, stomach issues, and was pretty moody for a while. It seems that we truly have to learn the meaning of patience when diagnosed with Celiac because the healing process takes quite a while for some folks, depending on how significant your damage is. Some days you'll wake up feeling great, and other days completely lousy.

I agree with GFin (and he knows his stuff) to begin with a whole foods diet (meat, chicken, fish, veggies, fruits, nuts) until your gut heals more. I would also suggest to begin taking probiotics and digestive enzymes - they've helped me out a lot and I wish I had started them sooner. This is a great place for support and I agree with your wife that we often times do need that support when we start out going gluten free - this forum has been a lifesaver for me! Good luck and best wishes to you!!

0

Share this post


Link to post
Share on other sites

I appreciate the input. From what I've read, it sounds as though going gluten free is easier today than it was even five years ago. Thanks all and I guess we'll talk soon!

0

Share this post


Link to post
Share on other sites




I missed the welcome wagon --

Hi MBMike!

Read a lot and ask questions - it really does make the transition much easier :)

0

Share this post


Link to post
Share on other sites

Welcome to the board Mike! And you are a very lucky man to have such a smart wife who encouraged you to join a board for support. She is welcome here also if she ever has any questions or just needs to rant herself. You are a few steps ahead of the game with such a supportive family!

And as to your question ---- you have been given good advice. There will be ups & downs for anywhere from a few weeks to maybe a year. Only time will tell how long it will be in your case as we are all individuals & have individual reactions & healing times.

0

Share this post


Link to post
Share on other sites

I appreciate the input. From what I've read, it sounds as though going gluten free is easier today than it was even five years ago. Thanks all and I guess we'll talk soon!

Cool beans Mike. Since you are new to message boards, you might like to try clicking the View New Content link on the top right of the main forum screen. That will give you a list of all the new thread postings so you can review what has been going on lately. I use Mozilla Firefox and so I can right click each thread and open it in a new browser tab. Makes it easy to go through the new posts quickly.

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
      103,878
    • Total Posts
      919,450
  • Topics

  • Posts

    • So I've been glutened....
      That sounds like a plan JMG.  If things aren't working then make a change, hopefully a positive change.  It seems to me we have more noticeable symptoms sometimes after being gluten-free a while.  I made a mistake last night and ate some tuna canned in water.  It definitely wasn't boring.  I usually have more sense than to eat tuna canned in water but screwed up last night.  They canned  it in broth of some sort.  Ingredients say vegetable broth and soy.  Yuck, not good for me.  It sure tasted good though, just ouch.  I am not saying it had gluten in it, but it does have soy and some kind of unnamed veggie monsters.  So it could be soy, or carrots or some other disgusting vegetable that got me.   Not all celiacs have additional food intolerances beyond gluten, but some do.  My gut could testify to that.  Anyway, if you have bloating, cut out all carbs and sugar for starters.  And try peppermint tea or Altoids.  Over here we have something called Pepto Bismol that helps soothe gut pain and another neat thing called aspirin.  And gluten-free beer as needed.  
    • Gluten free apparently not helping entirely
      Jean, Maybe your boss can find you a job in the office for a while?  It's worth asking maybe? It's not easy being on constant travel with celiac disease but it can be done.  Your effort to find safe food is going to be harder than most but it is not impossible.  But if you can't manage it you should really think about getting a non-travel job.  Your boss may be willing to work with you on an office position, even if it's temporary.  That would give you some time to look for a local job and also eat a safer diet. It's really up to you to control your diet and make sure it is safe.  If you can't figure out how to  do that while traveling you owe it to yourself to figure a way out of the travel. Celiac disease isn't always fun and games.  Not always.   I hope you find a way to improve your circumstances.
    • Gluten Free baby food pouches?
      Anyone know of any baby food pouches that are gluten free?  We love to have them on the go for our kids (not just baby), but I have no idea which ones to get now!  We used to get Meijer brand and Plum.   Thanks!
    • gluten free, oat free, egg free breakfast ideas needed for 6 year old
      Thanks for everyone's suggestions!  I think I felt at a loss when we had to cut oats- we used to do cheerios and oatmeal regularly and now those are out.  She has a sensitivity to oats as well as wheat/barley/rye. 
    • So I've been glutened....
      The bloating has, if anything, got worse. It seems better when I'm lay down, when I stand it gets worse. Although the lymph swelling has gone down so maybe I'm through the worst. Hope so anyway... I never used to get a great deal of GI symptoms. Certainly not so serious as the other stuff. It's making me wonder if I just react differently now having been gluten-free for some time. I've noticed lot's of you saying that reactions seem to change over time. Of course its possible the other stuff was masking the GI things. I almost dont trust my memory of those times anymore because a whole chunk of my life seems to have been lived through a brain fog. Tomorrow I'm thinking of going away for a couple of days, maybe just taking some ultra simple food with me so I can try and settle my stomach by boring it into submission      
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,921
    • Most Online
      1,763

    Newest Member
    ChrisMelbourne
    Joined