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Megawisdumb

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Megawisdumb Apprentice

Nothing like starting 2023 with some intrigue…after my post below in Nov stating that my gluten-free diet seemed to make matters worse.  Well I was correct… my Enterolab lab results confirmed yesterday I have significant immunological reactivity to Corn, Egg, Chicken, Oat, Rice, Beef, Pork, Tuna, Cashew, Walnuts, Almond and White Potato.  This is essentially everything I’ve been eating since gluten-free so that certainly explains a lot.  My favorite is the category labeled “Food which there was NO significant immunological reactivity” which stated “None”.   Not really certain what the hell I’m supposed to eat but maybe some cheap dog food as commercials inform me it has none of the stuff above in it.  Satire aside, I've got some appointments schedule to try and get to the root or at least rank them so I can get back to some normal activity.   In some cases Celiac may be the starting point on the journey not the destination.   

 


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knitty kitty Grand Master

@Megawisdumb,

What have you been eating?  Do you keep a food diary? Do you eat processed gluten free foods?  

Have you tried the Autoimmune Protocol Diet? 

Do you eat a lot of high histamine foods?

Have you been checked for vitamin and mineral deficiencies? 

Megawisdumb Apprentice

I've been strict gluten-free since Sept 2022, with primarily beef, chicken, corn and potato products.  I prepare 95% of my meals at home and take them to work.  Almost no histamine foods.  My blood panels look good as I take a mult-vitamin daily as well add'l B1.  I know at some point I will start to feel better as I had so much more energy when I was a pizza pop-tarts and beer guy.  When I started gluten-free and ate more corn & chicken that anything else and my latest Enterolab test placed these two at my highest reactivity level so currently cream of rice, all sorts of fruits, rice and beef are my energy sources until I can get some relief on the joint pain.  In Sept I could run a 10k, today I avoid the stairs.  I have the AIP printed on my frig as its my target with rice added for now.   I really appreciate the information from members of this page as its been invaluable.  I would still be on my gluten-free only diet if I didn't learn about stool testing and other foods I may be sensitive to from this forum.  I made it to my late 50's without any health issues or diet restrictions until now so I am blessed beyond belief based on the stories I've read on this site.  I have never had any GI issues with celiac only the DH skin and joint pain that has escalated which is the sole reason I posted as it seems much different from classic celiac.     

knitty kitty Grand Master

Have you had your Vitamin D level checked?  Supplementing Vitamin D until the level is in the eighties nmol/l is important.  Vitamin D can act like a hormone and regulate inflammation at that level.  

Including healthy fats, Omega Threes, is important to joint health.  Extra Virgin Olive oil, coconut oil, avocado oil are healthy fat options.  Omega Threes are in fatty fish like salmon.  Liver is a source of healthy fats as well as vitamins and minerals.

I take flaxseed oil supplements and can tell the difference by achy joints if I miss a day.  

Hope this helps! 

Megawisdumb Apprentice

I have not inquired on the D levels.  My multi V has 25mcg which I'll certainly add a separate D supplement to give it a try as well as the fat friends.  I saw my dermatologist yesterday on the DH followup and she took several blood samples after I told her about my joint pain.  Thank you!

Wheatwacked Veteran

If you are ok with milk, 100% grass fed has omega 6:3 ratio of 1:1 while regular commercial milk is 5:1. White wheat flour is 22:1. Optimum for humans is less than 4:1.

25 mcg of vitamin D is enough to keep you from getting Rickets. For reference, I have been taking 250 mcg a day since 2015 and my blood plasma is steady at 80 ng/ml for over two years now. It took from 2015 to 2019 to reach 47 ng/ml. pipingrock.com is the best value I found on D. $15 for 250 caps of 250 mcg.

MiriamW Contributor
On 1/26/2023 at 3:33 AM, knitty kitty said:

Have you had your Vitamin D level checked?  Supplementing Vitamin D until the level is in the eighties nmol/l is important.  Vitamin D can act like a hormone and regulate inflammation at that level.  

Including healthy fats, Omega Threes, is important to joint health.  Extra Virgin Olive oil, coconut oil, avocado oil are healthy fat options.  Omega Threes are in fatty fish like salmon.  Liver is a source of healthy fats as well as vitamins and minerals.

I take flaxseed oil supplements and can tell the difference by achy joints if I miss a day.  

Hope this helps! 

Hi @knitty kitty I take a tablespoon of organic high lignan linseed oil daily. I was wondering, would you know if it is safe taking it daily long term? 


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LaLeoLoca Apprentice

A nutritionist I respect said that until the main food sensitivities are found, the body can keep developing new ones. This is the balancing act In facing now, with severe health issues and few things I can keep down. I hope that as the months or years go by, maybe my body will be less sensitive. For today, I feel how frustrating it is. I hope you find things that are good for you! 

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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