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Newly Diagnosed with Celiac


Chris-B

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Chris-B Apprentice

Hi everyone. My name is Chris. I'm 42 yrs old and for many years I've always thought I had IBS and that is was something I'd just have to live with and suffer through. I'm also lactose intolerant. About three weeks ago after having a binge pizza night that led to severe pain for days after I spoke with my doctor. I have throughout this year had very inconsistent bowel movements. Sometimes hard and within an hour of that explosive. I have also been dealing with abdominal pain on a daily basis. Usually left side around my rib area. After describing my symptoms my doctor he ordered a Tissue Transglutaminase Antibody test. Within a few days I had positive results. 😟 So now I have gone gluten free. Before all of this I rarely ate processed foods and have always been a believer in whole real food. I am also active in fitness. I figure this shouldn't be extremely difficult to adjust. I read labels before buying products anyways. My biggest question is the healing part. I do still experience some abdominal pain even though gluten free for 3 weeks, but not as severe. I no longer have diarrhea though and I have been pretty regular thankfully. I have added a fiber supplement, bifido probiotic, and been eating really clean. I do believe that I have issues with rice though. Not sure if that's common? I've eliminated that from my diet. I wonder how healing after removing gluten has gone for others? Is there a time-frame that seems to be an average for healing and not having pain? Or is it different for everyone? Is there any advice for someone just starting out on this lifestyle change? Things I should do? Things I should take? Any tips would be much appreciated. Thank you. 

 

Chris


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trents Grand Master
(edited)

Welcome, Chris!

Substantial healing of the small bowel villi usually takes months and up to a couple of years. A big part of that equation is how successful you are in avoiding incidental exposure to gluten such as might be found in supplements/meds and cross contamination. Every gluten event is a setback to healing. Research any meds/supplements/vitamins you may be taking to check for gluten. Wheat starch can be included in pills as a filler.

Also, celiacs commonly have developed allergies and intolerances to other foods apart from gluten by the time they are diagnosed. Dairy and soy allergies/intolerances are very common among celiacs but it can be almost anything. Damage to the small bowel mucosa allows larger than normal protein fractions to enter the blood stream where they are misinterpreted as invaders and thus allergens. What I'm getting at is that your abdominal pain may be caused by something not containing gluten.

I would suggest eliminating as many prepared foods from your diet as possible and stick to simple, basic fresh meat, fruits and vegetables. Also, consider keeping a food diary to try and pin down things you eat that might be causing your issues.

Edited by trents
Hellodee Newbie

 I would add: look for hidden sources of gluten contamination. Replace any cookie sheets, wooden spoons, anything you used for cooking that had gluten ingredients. Good luck finding a noodle or bread that tastes good. A lot of celiacs are lactose intolerant, good thing we have a pill for that.  My biggest drawback was hidden sources and I still find it to this day, 14 years into this disease. If you have a problem with oats, there are certified gluten free oats. I do not eat things that have a shared conveyor belt, like snacks. You'll come to love certain brands and also hate certain brands. Cheerios make me sick but CHEX is just fine. General Mills does not use certified gluten free oats, I don't care what they say on the box.  I won't eat at a friend's house unless I provide the ingredients or watch them make it. Crumbs on your butter can make you ill. I live in a shared house because I think it's cruel to make my SO suffer the horrors of gluten-free bread or noodles. So, we have 2 of a lot of things. I even write my name on containers so no one else will use them. The best advice I ever received was, don't be too hard on yourself. It takes time and you will get gluten but it's ok. I've noticed the older I get the more things bother my belly. Hang in there. This is an excellent source of information and good luck!

Luvs2read Rookie
On 12/22/2020 at 1:18 PM, Chris_B said:

Hi everyone. My name is Chris. I'm 42 yrs old and for many years I've always thought I had IBS and that is was something I'd just have to live with and suffer through. I'm also lactose intolerant. About three weeks ago after having a binge pizza night that led to severe pain for days after I spoke with my doctor. I have throughout this year had very inconsistent bowel movements. Sometimes hard and within an hour of that explosive. I have also been dealing with abdominal pain on a daily basis. Usually left side around my rib area. After describing my symptoms my doctor he ordered a Tissue Transglutaminase Antibody test. Within a few days I had positive results. 😟 So now I have gone gluten free. Before all of this I rarely ate processed foods and have always been a believer in whole real food. I am also active in fitness. I figure this shouldn't be extremely difficult to adjust. I read labels before buying products anyways. My biggest question is the healing part. I do still experience some abdominal pain even though gluten free for 3 weeks, but not as severe. I no longer have diarrhea though and I have been pretty regular thankfully. I have added a fiber supplement, bifido probiotic, and been eating really clean. I do believe that I have issues with rice though. Not sure if that's common? I've eliminated that from my diet. I wonder how healing after removing gluten has gone for others? Is there a time-frame that seems to be an average for healing and not having pain? Or is it different for everyone? Is there any advice for someone just starting out on this lifestyle change? Things I should do? Things I should take? Any tips would be much appreciated. Thank you. 

 

Chris

I had such pain before diagnosis 6 years ago. Now I’ve recently had many bouts in last 3 months. Trying to figure it out myself but haven’t given everything up over holidays to do a true elimination diet. Rice could bother you. Grains can be tricky even so-called gluten free grain I can’t eat oats at all even certified gluten free oats.  I used to eat a lot of corn but have had bad reactions to corn.  I actually feel my pain could be from corn and rice pasta. Going to switch to chickpea pasta. 

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  • Posts

    • trents
      I think most of us, when we first got our diagnosis, imagined that going gluten free would be the magic the bullet that would restore us to perfect health. We soon find out that it usually isn't quite that simple and that celiac disease has long fingers.
    • Celiacsugh
      Thanks! I still have much to learn, I'd hoped going gluten-free would be a magic bullet and I'm learning my system is still very sensitive which is overwhelming and discouraging at times. Thanks for the yogurt tip! There is comfort in knowing that this is common during early healing and I'm not alone! 
    • Celiacsugh
      Thanks so much for the response. Are you usually able to pinpoint a trigger when you get the pain again? What I didn’t share in my earlier post is that I also usually eat out on weekends (though I share celiacs/needs to be gluten-free) and I’ve also been under a lot of stress lately in my personal life. While I’m speculating that it’s the wine it could certainly be a number of things. Do you ever notice the pain more when you are stressed? Learning so much about the brain/gut connection and celiacs. Thanks, there is comfort in hearing others have experienced similar symptoms. 
    • Raquel2021
      This was my main symptom. I still get it from time to time. Also feels like a burning pain on the upper abdomen. I think the wine could definitely cause the pain to be worse. There are do many things I still can't eat.
    • trents
      Yes and this is true of gluten free ready made, processed and prepackaged foods in general. In particular, hard to digest polysaccharides are commonly used in these products that give many celiacs issues and I personally don't handle some emulsifiers well. IMO, reactions to these ingredients are often mistaken for a gluten reaction.
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