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According To Recent Data, Gluten-Free Doesn't Seem To Be Enough


Gfresh404

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Skylark Collaborator

I bet you're exhausted with those labs. There's plenty of us on the board with Hashimoto's, some much better at reading thyroid labs than I am.

My TPO was 400-something which is a fairly spectacular level of autoimmunity, and I have anti-thyoglobulin in the 60s I think. I've been hypothyroid for years with TSH as high as 11 but the autoimmune antibodies only got going in 2008. I was OK on T4-only until a couple years ago when that high antibody titer showed up. Now I'm on a generic natural thyroid by Acella. My last round of labs had my FT4 dead-normal and my Dr. only did total T3, which unsurprisingly came out a little high because of the natural thyroid.


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pricklypear1971 Community Regular

I bet you're exhausted with those labs. There's plenty of us on the board with Hashimoto's, some much better at reading thyroid labs than I am.

My TPO was 400-something which is a fairly spectacular level of autoimmunity, and I have anti-thyoglobulin in the 60s I think. I've been hypothyroid for years with TSH as high as 11 but the autoimmune antibodies only got going in 2008. I was OK on T4-only until a couple years ago when that high antibody titer showed up. Now I'm on a generic natural thyroid by Acella. My last round of labs had my FT4 dead-normal and my Dr. only did total T3, which unsurprisingly came out a little high because of the natural thyroid.

Jowza. 400??! You're an over-achiever!

My last labs came back with a tsh of 8+. Never ever had one that high before. My TPO was up, inflammation up. It was a mess.

Just had saliva cortisol/estrogen/testosterone, etc. run and estrogens were low normal, progesterone low, ratios off, dhea low, cortisol low. Estrogen/progesterone correlate to blood draw, also.

I remember reading some articles about the interplay of adrenals/thyroid. Can't find them now but the gist was that neither can improve independently or higher than the other. So, if adrenals are lagging, thyroid will only improve so much. Vice versa.

Anyway, after years of thyroid (t3/t4, natural and synthetic) and only improving X amount, 9 months gluten-free, and still lingering problems...I'm trying some hormonal supplamentation:adrenal support with dhea, and a progesterone/estrogen natural cream. We'll see.

Skylark Collaborator

Yeah. I don't do autoimmunity halfway. :lol: I was running low-grade fevers from the inflammation and I even had some hyperthyroid symptoms for a bit. I am getting nice results as far as adrenal support with panax ginseng.

A low-lectin diet with plenty of omega 3 seems to help the inflammation. I still feel sort of ill though and am plagued by cognitive problems and subtle neuro issues like metallic taste and dizziness. My Dr. and I are thinking it may be chronic migraine prodome.

This is why I don't think gluten free is a perfect cure. The Hashimito's showed up 3 years gluten-free.

Gemini Experienced
Anyway, after years of thyroid (t3/t4, natural and synthetic) and only improving X amount, 9 months gluten-free, and still lingering problems...I'm trying some hormonal supplamentation:adrenal support with dhea, and a progesterone/estrogen natural cream. We'll see.

Nine months is not very long to be gluten-free to expect results with your thyroid. I have been gluten-free for 7 years and now my TPO is normal....under 40 for the lab I am using. It was, believe it or not, 1200 the year before I was diagnosed with Celiac. It came down steadily over the next 6 years as I stayed strictly gluten-free and by using a T3/T4 combo. T4 only is useless. I have suppressed my TSH for years to gain control back. Using TSH only for thyroid monitoring should be banned! :angry:

I have been hypo-thyroid (diagnosed) for 20 years so there was a lot of damage, pre-Celiac diagnosis. It can take a very long time to balance things out....be patient!

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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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