The Five Stages of Celiac Disease

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

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:

Open Original Shared Link

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.  

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.

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.

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.

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

thanks so much for every bit of information guys. any small bit of awareness gives us hope. thanks so much❤❤❤

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.

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.

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.