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KMS83

How to feel healthy post-diagnosis

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Hoping to gather some tips from this post.  I am in my late 30s and was diagnosed 1.5 years ago with celiac.  I am pretty sure I have had it for years and just did not realize that it was not normal to have a stomachache every night!  

 

I feel so much better since being diagnosed and going gluten-free, however still not 100%.  Once in a while I have a day where I feel truly great - good energy and no pain.  I am chasing that feeling and trying to make more days like that!

I work really hard on a healthy lifestyle with getting enough sleep, consistant exercise and mostly a whole foods diet.  I am at a healthy weight.  However I still have most days where something is vaguely off like low energy, stomach hurting, dizzyness or brain fog.  I can't seem to identify what causes this.  

 

I would love to hear tips on things to check out health-wise.  Vitamin status or other food intolerances?  Am I inadvertantly glutening myself? How do I go about figuring this out??  Is this just normal for this illness? It is getting so frustrating.

 

I do also have hashimotos and was iron deficient, so those might play into these symptoms.  I take iron supplements and levothyroxine.

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Welcome to the forum, KMS83!

First, get your thyroid hormone level checked if you have not. That could definitely wreak havoc with your energy levels. 

Second, several recent studies have demonstrated that most people who believe they are eating gluten free are actually practicing low gluten diets. This is especially true for those who dine out. So double down on that front. Check all labels and make sure you are not getting gluten in your meds and supplements, toothpaste and and anything that goes into your mouth. You may have to contact manufactures to get the necessary information. 

Even small amounts of gluten can inhibit the healing of the villi.

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Thank you!  Yes I am wondering about accidental exposure.  I have two toddlers that eat a lot of gluten, so certainly could be getting some cross contact thru their food.

I also did not change out my pots and pans.  I just clean them thoroughly after each use.  Is it necessary to buy new cooking implements?  I am hoping to avoid that expense.

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You'll get a variety of feedback on this forum with regard to throwing out cookware. Personally, I believe through washing should do the trick. Be especially careful with cast iron skillets because they are fairly porous.

I really think you should consider getting genetic testing done for your toddlers. First degree relatives will have some of the genes that can lead to the development of celiac disease and there is a good possibility that those genes will be expressed someday, that something like a viral illness will trigger the latent potential for celiac disease. And if you are aware of that potential then you can likely catch it early before damage is done to their bodies. Not sure if genetic testing is in your budget, however.

Also beware that kissing someone who is consuming gluten can result in you getting contamination from their saliva, especially soon after they have eaten gluten. 

Actually, it always works out better if everyone in the household commits to gluten free eating even if only one is a celiac. There is much less likelihood there will be cross contamination or an accident, like when I accidentally ate my wife's wheat biscuits a year or so ago. But they looked just like the gluten free ones she made me!

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Welcome to the forum!

I need to update this article, but if you haven't seen this it may be helpful to you. I also recommend keeping a food diary, as perhaps you have additional food intolerance issues.

 


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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Hi KMS83. 

You might ask your doctor for an updated TTG blood test which shows the level of gluten antibodies in your system.  If your gluten antibodies are still high now, a year and a half after your initial diagnosis, that could be an indicator that you are still getting regularly exposed to gluten, whether directly or indirectly (via cross-contamination).

Also, my personal advice is to eliminate ALL packaged foods (even those labeled "gluten free" or certified gluten-free) from your diet, avoid restaurants (even those touting gluten-free menus) and begin buying/cooking/eating 100% natural (fresh foods).  So many packaged/processed foods contain "hidden" gluten (despite food manuf. claims to the contrary) and, unfortunately, the US gov. lacks the regulations and staff to ensure rigorous, consistent food safety oversight to truly protect folks with celiac disease.  Also, some folks are so sensitive to even tiny bits of gluten, that even foods labeled "certified gluten-free" can trigger symptoms in them.  

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