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
      104,676
    • Total Posts
      921,696
  • Topics

  • Posts

    • I doubt it. I would think that would be a questions for the company that make them.    But if smoking makes you feel bad....and you are able to quit for several weeks at a time....why go back to it?
    • Hi. I've noticed that after a break of smoking (2-3 weeks) I feel bad, when I begin to smoke again.  Maybe they contain some additives with gluten??
    • Thank you everyone! Good to know I am not alone with this. I am asking for a referral to a new cardio. Hopefully it will all go away the longer I am gluten-free. It started up in February/March after a gluten challenge and mostly vanished until July when I had a lot of shortness of breath. It absolutely was CRAZY just a few days after the glutening. I was gasping for breath and the beats were all over the place just walking through a parking garage and I was only mildy anemic at the time.   But it seems to "quiver" and do funny things for a bit still. I sort of theorized maybe it was inflammation in the heart because after this last glutening, my head felt like it was in a vice and my eyes would sting or get stabbing pain hurt (that is finally going away thankfully...knock on wood).  The head/eye pressure I learned also happens to my sibling who has celiac and his naturopath told him that sometimes the brain gets inflamed. Hopefully I can meet the new cardio soon and feel confident that he is taking me seriously. It is sort of difficult to feel confident in the opinion of a doctor that your ticker is ok when they are not really listening and end up making you cry. LOL. A friend of mine in the mental health field recently listened to my story of doc after doc and test after test and said that it was akin to the folk story of blind men describing an elephant. A group of blind men all feel one part of an elephant (tusk, tail, ear, tail) and then compare notes only to find they all disagree.  In some  versions they argue intensely. In other versions they have to collaborate and listen to each other in order to "describe" an elephant.    
    • Good afternoon! I am new to this board and fairly new to researching Celiac Disease, although I had a general idea what it was. My health has become a huge mystery to me, and it's one that I am desperate to solve. The biggest issue right now is horrible, life affecting fatigue. I have been dealing with it for several years now- as many as 5 to 6. It has gotten progressively worse, and nothing at all helps. Sleep apnea has been ruled out. Intestinal issues are something I have dealt with for almost two decades. I'm 45, but I've already had two colonoscopies as well as two endoscopies. My first endoscopy was as a child for persistent, severe stomach pain. My last colonoscopy and endoscopy was two years ago. The only thing that has come from those is an Irritable Bowel type condition and GERD, which is pretty bad. My bowel movements have always been crazy. They can be very normal and healthy to completely crazy. I've had periods of persistent diarrhea to occasional constipation, which is a fairly new thing within the last year. Last week, I went from having diarrhea that morning to hard, round balls of stool by that evening. My most common stools here lately, though, are not quite diarrhea, but more fluffy, large piles. Gas is an ongoing, daily issue for me. I have copious amounts of gas every day no matter what I eat or drink. Most of the gas in non-odorous but it can be very loud. I am currently on a total of 60 mg of Ritalin per day just to function. I often add energy pills, purchased from places such as GNC, because the Ritalin isn't working. Yesterday, I took both doses of Ritalin and two energy pills, and I passed out on the couch after work. I work from 7:30am to 3:30pm, and my work day is nothing too crazy. I try to keep very consistent sleep hours and could easily sleep to 1:00pm or longer if I don't have to get up for something. I sometimes have short periods of energy in the mornings, but that is usually over by noon. The quality of my life is greatly affected. I don't want to go anywhere or do anything because I am way too tired. I'm trying to keep up with my exercising, but that is also a struggle.  I have a history of clinical depression for practically all my adulthood, but it has been very well managed for the last four years. The fatigue is currently causing a great deal of depression, but it is very different from the clinical depression that I use to deal with. When I don't feel sleepy and tired, I don't feel depressed. When the fatigue sets in, I feel very irritable and sad. I realize that the stimulants can cause irritability, but I don't feel irritable or sad when I'm not feeling fatigued.  I've only recently began to explore that the fatigue and the intestinal issues could be related. I have always accepted that I have a sensitive, cooky digestive track. The increasing, unrelenting fatigue is what has lead me to exploring the possibility that everything could be related. I did have blood work last November. My doctor did not test for anything Celiac Disease specific, but she did do a Vitamin D, ferritin level and overall metabolic panel. All of that is normal. My thyroid level is also normal, and I do take thyroid hormone because I had half of my thyroid removed 11 years ago due to what turned out to be a benign thyroid tumor.  I just saw my doctor two weeks ago, and she increased the dosage of my Ritalin. That has not helped at all. She has never mentioned Celiac Disease to me before. I made an appointment for this Friday afternoon to talk about it, but I keep wondering if I'm even heading in a direction that makes sense. I decided to post here for some guidance. I'm sorry this has been so long. I'm not really into cutting something totally out of my diet just to see what happens. I also feel like that if I have something that is poisoning my system, I need a real clinical diagnosis of that. I feel like maybe I'm grasping at straws now and imagining a correlation that isn't there. I am not looking for a quick fix, but right now I have no idea what needs to be fixed. I am open to any information and/or suggestions. Thanks so much!   Jennifer
    • Celiac disease sufferers or those who embrace a life without gluten can check out Canada's Gluten-Free Market when it makes stops in London and ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,673
    • Most Online
      3,093

    Newest Member
    KAN
    Joined