Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


  • You've found your Celiac Tribe! Join our like-minded, private community and share your story, get encouragement and connect with others.

    💬

    • Sign In
    • Sign Up
  • Kelly Carter

    The Five Stages of Celiac Disease

    Kelly Carter
    5 5
    Reviewed and edited by a celiac disease expert.

      Panic in OMG what the heck am I going to eat. All of my go to foods - spaghetti, pizza, beer, and sandwiches are all gone.


    Image: CC BY 2.0--TJH1976
    Caption: Image: CC BY 2.0--TJH1976

    Celiac.com 01/16/2020 - So, I've been thinking about this for a while. There are stages to the diagnosis of Celiac disease just like there are stages to grief or healing from alcoholism. Here's how I see it.

    The First Stage is Relief

    Relief that I finally have a name to go with all of the crazy symptoms that have been happening. Relief that this beast finally has a name. Now I know what has been causing the diarrhea and/or constipation, constant fatigue, and brain fog. Even the doctors know that I'm not crazy now - I was really sick. Ha, ha, sweet revenge. I kept telling them I was sick, but they wouldn't listen. Relief that now there is an enemy to fight and that enemy is gluten!!

    The Second Stage is Panic



    Celiac.com Sponsor (A12):






    Celiac.com Sponsor (A12-m):




    Panic in OMG what the heck am I going to eat. All of my go to foods - spaghetti, pizza, beer, and sandwiches are all gone. Holy cow!! What about Christmas stuffing and Thanksgiving pumpkin pie? What on earth am I going to eat? What about vacations? We can't travel because I won't be able to eat anything. We can't leave the house. I will be trapped for the rest of my sorry, sad gluten-less life. AAAAGGGGHHHH

    The Third Stage is Overboard

    Now, I've figured out what I can eat and I'm going to be hyper vigilant about being gluten free. Nothing can ever be in the vicinity of my gluten free food.
    People eating at the same table as me cannot possibly have bread on the table otherwise I might get sick. I cannot possibly go to a gluten filled bakery. I will die, literally die! I'm also going to tell everyone I'm gluten free and have celiac and cannot possibly ever come to their house because I will die, literally die!

    I have to take a bottle of water to a restaurant because I cannot trust them to wash the dishes. If someone had a gluten drink in that glass and they washed it, how can I be sure they got the gluten off. What if they washed it with gluten items? OMG, I will die, literally die if I drink from that glass. I will bring my own bottled water to the restaurant and just sit quietly while you enjoy your plates of gluten filled poison.

    The Fourth Stage is Acceptance

    I've got this awful disease. I'm going to do the very best I can at a gluten free diet. I will make mistakes, but it will be ok. For the most part, I'm healthy and I have a good grasp of what to do in most social situations. I know where I can eat safely and can
    cook safely.

    I no longer have to look up every single item I'm buying at the grocery store because I've looked it up 100 times before. I know the item is safe.

    I'm confident in my ability to order a gluten free meal at a restaurant and be okay. I know to say that I have a gluten allergy or celiac disease and it is not a choice. I know not to order fried chicken and expect the kitchen to be able to provide me gluten free fried chicken unless it is explicitly marked.

    I know for the most part this disease sucks. I know what my body can handle and what it can't. I never purposefully ingest gluten but realize we live in a gluten covered world and I will get glutened. I can calmly and rationally get through the temporary pain to get to the other side. I know that the double edged sword of the gluten free fad diet is temporary. I am grateful that the diet has brought awareness to the disease, but deeply saddened that the need for gluten free food has been cheapened by the fad dieters. I am grateful for spring with the gluten free bonanza of Passover and Aldi in May.

    The last stage is Hope. Hope that there is a cure around the corner. Hope that our Celiac children don't have to endure the lack of treatment for Celiac. Hope that we will have a way
    shortly to alleviate the symptoms of a minor and maybe major glutening and trust that we aren't doing long term damage to our systems. Or even, the ability to eat freely again without worrying about every morsel of food we put in our mouths. Hope that another generation doesn't have to endure the long and painful process of being diagnosed with Celiac. When the doctors dismiss every symptom as depression or IBS without really looking at me as a whole.

    The Really, Final Stage is the "GOOP" Stage

    This is where I mistakenly believe, like Gwyneth Paltrow, I invented Celiac disease.

    This is a little tongue in cheek! I hope everyone can get to the Hope stage of this disease and not get stuck along the way.

    5 5

    User Feedback

    Recommended Comments



    My experience hasn't been as great as others seem to have been. I still showed up as being "glutenized" on my blood test a year after I was diagnosed and did my very best to be gluten free including only eating at places that said they understood celiac disease and took precautions to prevent cross contamination. My daughter who also has celiac disease lives with me so the entire house had been gluten free for years. Her blood tests have been fine since she stopped eating gluten and I created a gluten free household. I  have gone back to checking  every item, I recalled every company for items like tea and avocado oil  to be sure there isn't any cross contamination and don't eat out at all ( very difficult on one's social life) because I assume my celiac disease must be more sensitive than my daughter's. She was diagnosed in her early thirties, I was 67. 

    Two additional years later I still have super high gluten results on my blood tests. The gas, bloating, going to the bathroom many times a day which are my symptoms  aren't really my problem. I had those symptoms for decades before I was properly diagnosed  and I am used to it even though it isn't comfortable or good for me. I also have had very bad GERD since I was 40 which I had surgery for and take medication for and follow all the lifestyle appropriate behaviors for GERD but none of it works and my gastro thinks it may be because of my celiac disease. I currently am running a self test for oatmeal. I was buying gluten free organic oats and having it 5 times a week ( I have slightly high cholesterol). I am going to have an additional blood test after 10 weeks to see if that helps. My gastro thinks that it won't but I have read it could so I'm giving it a try. I do eat some gluten free baked goods (crackers, cookies, waffles, bread) almost every week.  Maybe some of them aren't gluten free I have no way of knowing. If the oatmeal thing doesn't work I guess I will give up all baked goods and only eat whole foods.  Maybe I'm still in stage 3 but it has been over three years and I am sad and frustrated most of the time. Also if I can't get my GERD under control my esophagus can  burst and kill me. At least that is what my gastro and surgeon have told me.

    Share this comment


    Link to comment
    Share on other sites
    1 hour ago, Guest Pat R said:

    My experience hasn't been as great as others seem to have been. I still showed up as being "glutenized" on my blood test a year after I was diagnosed and did my very best to be gluten free including only eating at places that said they understood celiac disease and took precautions to prevent cross contamination. My daughter who also has celiac disease lives with me so the entire house had been gluten free for years. Her blood tests have been fine since she stopped eating gluten and I created a gluten free household. I  have gone back to checking  every item, I recalled every company for items like tea and avocado oil  to be sure there isn't any cross contamination and don't eat out at all ( very difficult on one's social life) because I assume my celiac disease must be more sensitive than my daughter's. She was diagnosed in her early thirties, I was 67. 

    Two additional years later I still have super high gluten results on my blood tests. The gas, bloating, going to the bathroom many times a day which are my symptoms  aren't really my problem. I had those symptoms for decades before I was properly diagnosed  and I am used to it even though it isn't comfortable or good for me. I also have had very bad GERD since I was 40 which I had surgery for and take medication for and follow all the lifestyle appropriate behaviors for GERD but none of it works and my gastro thinks it may be because of my celiac disease. I currently am running a self test for oatmeal. I was buying gluten free organic oats and having it 5 times a week ( I have slightly high cholesterol). I am going to have an additional blood test after 10 weeks to see if that helps. My gastro thinks that it won't but I have read it could so I'm giving it a try. I do eat some gluten free baked goods (crackers, cookies, waffles, bread) almost every week.  Maybe some of them aren't gluten free I have no way of knowing. If the oatmeal thing doesn't work I guess I will give up all baked goods and only eat whole foods.  Maybe I'm still in stage 3 but it has been over three years and I am sad and frustrated most of the time. Also if I can't get my GERD under control my esophagus can  burst and kill me. At least that is what my gastro and surgeon have told me.

    I am sorry that you are still struggling.  

    It is great that your house is gluten free.  I personally found that a gluten free home, avoiding non-processed foods as much as possible, eating at dedicated gluten free restaurants only and identifying food intolerances have put my celiac disease into remission based on repeat intestinal biopsies.  However, at the time of my repeat biopsies, my DGP IgA (which was the only positive I have ever had on the celiac panel) was very elevated.  I learned that testing for antibodies is not the best means of determine dietary compliance but it is the only non-evasive method, so doctors use it.  

    You have symptoms that sound like active celiac disease.  I found that I am almost grain free.  I have problems with Xanthan Gum found in most commercially processed foods.  Instead,  I bake with Pamela’s gluten free flour which uses guar gum.   No GI aches for me if I bake my own cakes and cookies.  But I still try not to consume very many gluten-free goodies as it is not healthy for me nor good for my insulin resistance.  

    For GERD, are your doctors certain it is related to celiac disease?  If after trialing a Whole Foods diet or the Fasano diet for a few months and you do not see relief, ask your doctor to test you for other autoimmune issues.  You can have more than one autoimmune disease.  Even though My celiac disease is in remission, I was diagnosed with Autoimmune Gastritis which is common with those who have Hashimoto’s. It can flare at any time despite being gluten free.  It causes low stomach acids, so PPI medications can cause more harm.  Also, low acid naturally occurs in aging people like me.  It can cause stomach cancer and b-12 and iron deficiencies.  I manage by not eating after dinner and sleeping on a wedge pillow at times.  

    I would work on making sure you are not consuming gluten.  If that diet fails (like it did for me), get a repeat endoscopy.  Find out what is really going on.  Ditch those oats!  

    Fasano diet for non-responsive celiacs:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

     

    Share this comment


    Link to comment
    Share on other sites
    1 hour ago, Guest Flo said:

    I was diagnosed alittle over a year ago. How is the best way to deal with weight gain. I have gained 35 pounds. ☹️

    After a diagnosis, your body can crave nourishing food to make up for deficiencies.  Eating without pain can pretty nice.  But many celiacs just convert from a Standard American Diet (SAD) to a gluten free Standard American Diet.  That SAD diet is not working out for anyone.  We are are an unhealthy nation!  

    Cut out gluten-free processed foods (junk).  Focus on real food.  Cut down on sugar.  You know the drill.  

    Finally, make sure you are in the normal BMI range.  Sometimes we celiacs get used to being very thin.  Your thirty pounds might be just right for you.  

    Share this comment


    Link to comment
    Share on other sites

    This answer is for Ennis in Texas.   If you are Protestant you can purchase gluten free wafers on Amazon or at vitacost.com.  However, if you are Catholic the church does not allow one to ingest totally gluten free wafers.   The Benedictine Sisters put out a specific wafer for Catholics.  They contain only .001 percent of gluten.   I am extremely sensitive and these wafers are fine for me.  The website is, benedictinesisters.org.  Hope this helps.

    Share this comment


    Link to comment
    Share on other sites

    I agree with these stages. My Mom apologized to me for passing on the celiac disease. I was OK with it, apology accepted, as it can be controlled by diet. I love to bake and have been enjoying learning how to bake with gluten free "flours." Glad to hear about the traveling comments. My hubby and I want to travel more now that we are retired.

     

    Share this comment


    Link to comment
    Share on other sites

     

     

    Yes, this disease one of the least stressful to deal with. I must admit to feeling so much better all the time since I  have been medically forced to change to a healthy diet. I don't  miss the gluten containing  foods much at all, and gluten free tastes pretty good once you get used to it.

     

     

    Edited by Brenda clemdnts

    Share this comment


    Link to comment
    Share on other sites

    Thanks for the article. I think that you over simplified the disease. It is a dangerous disease. I was first diagnosed with Hasimoto's disease. Years ago. When I looked it up, all it said was that it was hypothyroid. No mention of autoimmune or that maybe I should be tested for other similar diseases. My doctor, of course, said nothing. As you can suspect, I steadily worsened. I finally got so bad and was taking higher and higher doses of thyroid medicine, that I asked a Dr friends to refer me to a endocrinologist. He was very good. He told me that anemia of 20  years needs to be investigated. So I went to a gastroenterologist. He said he was 99% sure that I had celiac disease. Did the test and it came back positive.  So he said start eating gluten free. Look it up on the internet. This was 9 years ago. So I did. Felt awful at first, but then about 4 months in, I woke up and felt pretty good. I still had the brain fog, etc. Then one day I ate corn and had such a severe diarrhea, that I knew I had to go further. Now, I eat no grains at all. Makes it difficult. But no brain fog. Any way, about 6 years ago when I was to my endocrinologist I found it that I had no active thyroid tissue. Sorry long explanation. They point is that this disease does wreak havoc on your body. Autoimmune means that your body attacks normal tissue. So yes you have to be very vigilant always. A little gluten is not acceptable

    Share this comment


    Link to comment
    Share on other sites

    I have been Celiac for more that 25years, and it is so much easier now that when I started this journey. I live in Canada travel to the USA have been to Paris and my birth home the UK. The Uk and France have all the rest beat, with gluten-free choices. Wonderful options. Canada and USA pretty good and getting much better. So don't be afraid to travel carry some back up supplies just in case then go have fun.

    Share this comment


    Link to comment
    Share on other sites

    I was diagnosed with Celiac's when I was 25. Even after going gluten-free, I watched my health deteriorate over a decade. My immune system was totally broken down, and I even got tested for lupus. I didn't get physically better until I started a yoga and meditation practice. I, personally, think that the biggest issue we have with health today is that we allow the mind to tell the body what it needs to get better or to be healthy. What I've found is that my body has its own consciousness and tapping into this came the realization that I didn't have Celiac's. The first time I tapped into this body intuition, I immediately felt like my body was starving and in a panic to get the nutrients it needed. My body was and had been experiencing a serious case of malnutrition from a typical American diet. I also desperately needed the niacin in bread (go figure). Listening to what I needed, I was able to bring my digestion back into balance through eating what my body was asking for. Honestly, it's remarkable how detailed the information was and how quickly I got better after almost two decades of suffering. But it took a huge shift in my consciousness and what I believed to be true about health and wellness.

    Share this comment


    Link to comment
    Share on other sites
    36 minutes ago, Enlightened Creativity said:

    I was diagnosed with Celiac's when I was 25. Even after going gluten-free, I watched my health deteriorate over a decade. My immune system was totally broken down, and I even got tested for lupus. I didn't get physically better until I started a yoga and meditation practice. I, personally, think that the biggest issue we have with health today is that we allow the mind to tell the body what it needs to get better or to be healthy. What I've found is that my body has its own consciousness and tapping into this came the realization that I didn't have Celiac's. The first time I tapped into this body intuition, I immediately felt like my body was starving and in a panic to get the nutrients it needed. My body was and had been experiencing a serious case of malnutrition from a typical American diet. I also desperately needed the niacin in bread (go figure). Listening to what I needed, I was able to bring my digestion back into balance through eating what my body was asking for. Honestly, it's remarkable how detailed the information was and how quickly I got better after almost two decades of suffering. But it took a huge shift in my consciousness and what I believed to be true about health and wellness.

    Wow!  It sounds like you were mis-diagnosed with celiac disease.  Did you have intestinal biopsies to confirm it? If you had intestinal biopsies, along with a positive celiac blood test, you will always have celiac disease.  It can go into remission by remaining on a gluten free diet.  But it never really goes away.  

    I am happy for your improved health.  

    Share this comment


    Link to comment
    Share on other sites



    Join the conversation

    You are posting as a guest. If you have an account, sign in now to post with your account.
    Note: Your post will require moderator approval before it will be visible.

    Guest
    Add a comment...

    ×   Pasted as rich text.   Restore formatting

      Only 75 emoji are allowed.

    ×   Your link has been automatically embedded.   Display as a link instead

    ×   Your previous content has been restored.   Clear editor

    ×   You cannot paste images directly. Upload or insert images from URL.


  • About Me

    I was diagnosed with Celiac in 2012 and have been gluten free ever since.  I live in Atlanta with my husband and two medium sized children.  I run a blog at FatCeliac.net that covers real life issues with celiac disease, upcoming drug trials, and try to be a reliable source of information for the celiac community.


  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-m):