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Wheat, Corn, Dairy, paper products

Myki

By Myki
in Coping with Celiac Disease

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Myki Rookie
Myki
Posted

At the tender age of 18 I had my first beer in Wisconsin,  my mouth tingled and went numb. Asked my doctor about it because it happened again...he said don't drink beer so I never did again. Corn has made me feel depressed and triggered feeling a malaise. I started to notice it would take 2 days and no corn to feel  better, so started to limit corn. A few years down the line I developed skin lesions that no dermatologist could identify. And my favorite food of all was Italian bread made by a master baker, my grandmother. At a very young age when everyone was going to Mcdonalds for burgers. (I am 67 right now) I would feel sick after eating  a burger on a bun. Last Mcdonalds burger was in my 20's. I feel like a "canary in a coal mine". Being very aware that certain food made me feel terrible. I was dedicated to making sure I was careful with my diet and went on my merry way. UNTIL I had my first colonoscopy@ 40, I felt good after the procedure for about 4 days and then it was a down hill decline of stomach, headache, depression, body aches, skin lesions and more. Seems eating was triggering all of this. I was finally diagnosed with Celiac's 2 years ago at 65. This journey has tripped off depression, doctors were down right dismissive, my friends treated me like a head case, and I was just getting sicker. My sister also has Celiac's and was diagnosed at 40 years old, even with that information I could not get diagnosed, finally got a gasrtro who did the scope to prove to me it was IBS not celiac. He was dead wrong and offered me no advice on Celiac's, he prescribed PPI's and told me I can "still eat chocolate".  When I asked if the PPI's contain gluten he threw the script at me, I looked for a new gastro...Today why I am writing all this is because I think many factors trigger celiac. And I don't think its simple cut and dry what the cause and how severe. Yes of course its gluten, but it comes with a whole host of problems relating to malnutrition, malabsorption and more. I have a autistic 35 year old son at home due to that I was using paper plates to make sure I would not get cross contamination. My symptoms were getting worse and I was miserable, went on FODMAP diet for gerd. It was helping but still symptoms of gluten popping up. SO come to find certain paper products can be made with gluten. No disclosure needed by the manufacturers. So this is a life long struggle. As of 2022 our food is loaded with chemicals and processed to levels that are making us unhealthy. Just the amount of obesity should be a big red flag. I now have crazy allergies and the quality of life is limited. I have tried eating gluten free in restaurants only to be sick for days afterward. My sister who cheats on her celiac diet has had 2 bowel re-sectionings for bowl obstructions, and on her way to a 3rd surgery,  after a visit to the emergency room a few months ago. What I find is the medical community is ignorant of how celiac is a curve , from mild to severe. I want to move next to Mayo Clinic at least they know what to do.....

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Kyndryl Rookie
Kyndryl
Posted
3 hours ago, Myki said:

At the tender age of 18 I had my first beer in Wisconsin,  my mouth tingled and went numb. Asked my doctor about it because it happened again...he said don't drink beer so I never did again. Corn has made me feel depressed and triggered feeling a malaise. I started to notice it would take 2 days and no corn to feel  better, so started to limit corn. A few years down the line I developed skin lesions that no dermatologist could identify. And my favorite food of all was Italian bread made by a master baker, my grandmother. At a very young age when everyone was going to Mcdonalds for burgers. (I am 67 right now) I would feel sick after eating  a burger on a bun. Last Mcdonalds burger was in my 20's. I feel like a "canary in a coal mine". Being very aware that certain food made me feel terrible. I was dedicated to making sure I was careful with my diet and went on my merry way. UNTIL I had my first colonoscopy@ 40, I felt good after the procedure for about 4 days and then it was a down hill decline of stomach, headache, depression, body aches, skin lesions and more. Seems eating was triggering all of this. I was finally diagnosed with Celiac's 2 years ago at 65. This journey has tripped off depression, doctors were down right dismissive, my friends treated me like a head case, and I was just getting sicker. My sister also has Celiac's and was diagnosed at 40 years old, even with that information I could not get diagnosed, finally got a gasrtro who did the scope to prove to me it was IBS not celiac. He was dead wrong and offered me no advice on Celiac's, he prescribed PPI's and told me I can "still eat chocolate".  When I asked if the PPI's contain gluten he threw the script at me, I looked for a new gastro...Today why I am writing all this is because I think many factors trigger celiac. And I don't think its simple cut and dry what the cause and how severe. Yes of course its gluten, but it comes with a whole host of problems relating to malnutrition, malabsorption and more. I have a autistic 35 year old son at home due to that I was using paper plates to make sure I would not get cross contamination. My symptoms were getting worse and I was miserable, went on FODMAP diet for gerd. It was helping but still symptoms of gluten popping up. SO come to find certain paper products can be made with gluten. No disclosure needed by the manufacturers. So this is a life long struggle. As of 2022 our food is loaded with chemicals and processed to levels that are making us unhealthy. Just the amount of obesity should be a big red flag. I now have crazy allergies and the quality of life is limited. I have tried eating gluten free in restaurants only to be sick for days afterward. My sister who cheats on her celiac diet has had 2 bowel re-sectionings for bowl obstructions, and on her way to a 3rd surgery,  after a visit to the emergency room a few months ago. What I find is the medical community is ignorant of how celiac is a curve , from mild to severe. I want to move next to Mayo Clinic at least they know what to do.....

I'm so sorry you are going through this. It's good you found this online community to lend you some support. I find that with my own journey with celiac I got it diagnosed at the hospital after a week of being in severe stomach pain and no answers they ran every test on me and finally did an endoscopy and only then did they find out I had celiac disease. Which at first felt like a sigh of relief but in my mind I couldn't fully comprehend what this autoimmune disease was. Family didn't take it seriously and I felt cut off from family functions or work events if people were bringing in food or birthday cakes. I was so scared to even try gluten free cakes for a long time. Now I have to be even more restrictive because of lactose intolerance which I cheat and eat sometimes because it was so hard for me to keep cutting out so many things out of my diet. Gluten hides so many places like even a fanta pineapple soda (has malt). I mean I cut out soda, alcohol, oats and now full cut off of lactose. I mean it has made me overeat in a way in the past years. I now lost 25 lbs and working on losing more but I felt like I was missing out on life. 

I did slowly start cooking my own gluten free recipes and trying out different flours and even still it seemed my tummy would be sensitive. It's frustrating because it just seems nothing ever settles in my tummy always wake up at like 6 or 7am with weird stomach aches for 30 minutes. That used to be my life for years. Cutting out coffee helps. But coffee also gave me energy now I take iron supplements, vitamin c and d, pycnogenol, milk thistle, probiotics, multivitamin, choline, biotin and moringa. I realize now how bad my body is at absorbing nutrition and being malnourished was causing my extreme fatigue and never feeling rested enough. Now my body wakes me up at 7am and for the most part I feel refreshed and I have never been able to wake up that early on my own without an alarm clock. Also I have a sneaking suspicion celiac disease made me infertile. So, that's been the hardest part for me to deal with. 

Myki Rookie
Myki
Posted
  • Author
4 hours ago, Kyndryl said:

I'm so sorry you are going through this. It's good you found this online community to lend you some support. I find that with my own journey with celiac I got it diagnosed at the hospital after a week of being in severe stomach pain and no answers they ran every test on me and finally did an endoscopy and only then did they find out I had celiac disease. Which at first felt like a sigh of relief but in my mind I couldn't fully comprehend what this autoimmune disease was. Family didn't take it seriously and I felt cut off from family functions or work events if people were bringing in food or birthday cakes. I was so scared to even try gluten free cakes for a long time. Now I have to be even more restrictive because of lactose intolerance which I cheat and eat sometimes because it was so hard for me to keep cutting out so many things out of my diet. Gluten hides so many places like even a fanta pineapple soda (has malt). I mean I cut out soda, alcohol, oats and now full cut off of lactose. I mean it has made me overeat in a way in the past years. I now lost 25 lbs and working on losing more but I felt like I was missing out on life. 

I did slowly start cooking my own gluten free recipes and trying out different flours and even still it seemed my tummy would be sensitive. It's frustrating because it just seems nothing ever settles in my tummy always wake up at like 6 or 7am with weird stomach aches for 30 minutes. That used to be my life for years. Cutting out coffee helps. But coffee also gave me energy now I take iron supplements, vitamin c and d, pycnogenol, milk thistle, probiotics, multivitamin, choline, biotin and moringa. I realize now how bad my body is at absorbing nutrition and being malnourished was causing my extreme fatigue and never feeling rested enough. Now my body wakes me up at 7am and for the most part I feel refreshed and I have never been able to wake up that early on my own without an alarm clock. Also I have a sneaking suspicion celiac disease made me infertile. So, that's been the hardest part for me to deal with. 

Everyone has such a different path in the life of celiacs, and I am not sure how and why we aren't further along in what helps and what hurts. But I think because the type of damage depends on so much. I now know to listen to my body when it reacts. And right now I found that sugar is the demon food!!! makes my celiac's flair. Yikes whats next? Take good care of yourself and know that others are at home eating plain chicken and broccoli. Something tat really helps me when I have trouble is Marshmellow root and kids fiber gummies seems taking any adult size supplement is too much. So micro dosing is working.

 

knitty kitty Grand Master
knitty kitty
Posted

@Myki,

Have you looked into Small Intestinal Bacterial Overgrowth (SIBO)? 

Besides dairy and PPI's, SIBO can cause continuing symptoms.  

I adopted the AutoImmune Protocol Diet (AIP diet), and after a few days my symptoms began to improve.  I also lost weight which was water weight from bloated intestines.

Do get checked for vitamin and mineral deficiencies.  The Eight Essential B vitamins are needed every day.  They are water soluble and nontoxic.  I became severely deficient in vitamins and minerals before my Celiac diagnosis.  If given the proper building blocks, the body can repair itself.  The B vitamins are necessary for that, Thiamine and Tryptophan, especially. 

(My story is in my blog along with research I've collected over the years.)

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