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Is this all in MY head??


curiousgirl

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curiousgirl Contributor

I was diagnosed with celiac last Wednesday, 5/26. I've been doing the best I can on my own to eliminate gluten from my diet...haven't begun to take a look at my cosmetics and body care products. I have an appointment this Thursday with a new gastro doc...but until then.....

These are my test results:

tTG Ab,IgA

>100

Unit: U/mL

Reference Range:

NEGATIVE: <5

EQUIVOCAL: 5-8

POSITIVE: >8


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WheatChef Apprentice

Holy cow, unless I'm reading that terribly incorrectly your results are greater than 100 AU!

That couldn't be further from being "all in your head" it sounds more like it's all over your body! The cleansing process can be very confusing and it takes most people multiple tries to finally get totally gluten free at home.

In the meantime, my special drink for gastric issues concerns lots of bacteria. I personally prefer coconut kefir (some of the most delicious stuff in the world) but you could just take some probiotics (or mix the two!). Probiotics have been shown to aid in the recovery of celiac disease, while damaging your intestines with gluten you end up severely disturbing the natural colonies of bacteria that keep your guts running properly.

ravenwoodglass Mentor

It is not all in your head. It takes a while to recover from the damage, it didn't occur overnight and won't go away instantly either.

Be sure you check all meds and supplements you take, eat a whole food unprocessed diet and learn about CC issues. There is a bit of learning to this gluten free thing but you will get it. Your in a great place to learn what you need to do, like having a seperate toaster for your gluten free items, replacing scratched and wooden cooking utensils, not baking with gluten flours for others etc.

PrincessHungry Newbie

When I went gluten free, I experienced the most painful heart burn ever. For a week or two I ate rolaids and tums like they were candy. I had never experienced real heart burn before that. It was super intense but eventually went away. I think the severe diet change caused my body to freak out a bit.

I understand the "Is it all in my head" problem. Trust yourself. You know what's going on even if it seems crazy.

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • 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.
    • MogwaiStripe
      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.
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