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Heathers-garden

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Heathers-garden Newbie

I am sure you all get so many posts like this but wanted to see if I sound completely offtrack. I don't have health insurance right now...so am kind of on my own trying to figure this out for now.

I have five children and so have spent a lot my adult like being pregnant and raising small children. After the birth of my third son about six weeks after I started getting joint pain that slowly developed into full body aching and lower leg weakness. I was tested for Lupus/RA and tested negative for both. I remember feeling very depressed, anxious, and just an overall wreck. That was about six years ago. The joint pain subsided eventually to just include my feet. I also went to a Naturopath who thought I had leaky gut and told me some foods to avoid:dairy, citric acid, sugar, and I can't remember if wheat was in there.

A couple years ago the weirdness happened again but this time was more neurological. My feet still hurt, but I had some tingling, numbness, depression, and some shooting pains in my toes. I was tested for lupus, RA, AND MS this time. I did get some relief from foot pain from an osteopath and had inserts as well. I began to think maybe it was fibro although I know the dr. checked for points and couldn't find enough. I have been interested in some posts regarding stabbing pains near the belly button. I had that with my last two pregnancies above my belly button and they said they feel no hernia. After this last baby I still get it some, and it makes me sweat, freeze, swear and feels like someone is stabbing me right above my belly button. In general though symptoms disappear during pregnancy.

I had my last baby in March and have foot, ankle, and knee pain now. :P I am sure you understand how frustrating it is NOT to know what is going on. I have a couple friends who are gluten intolerant and started reading some about it. I have been avoiding it the past two weeks but don't notice much improvement. Growing up I had cold hives which I think someone said could be related, I have two cousins with Crohn's disease, a mother and grandmother with Schizophrenia and I have suffered from anxiety/depression. Am I crazy to think that maybe gluten is bothering me? I don't have GI symptoms at all. Why does my body have to be so weird?


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Gerri Explorer
A couple years ago the weirdness happened again but this time was more neurological. My feet still hurt, but I had some tingling, numbness, depression, and some shooting pains in my toes. I was tested for lupus, RA, AND MS this time. I did get some relief from foot pain from an osteopath and had inserts as well. I began to think maybe it was fibro although I know the dr. checked for points and couldn't find enough. .... Growing up I had cold hives which I think someone said could be related, I have two cousins with Crohn's disease, a mother and grandmother with Schizophrenia and I have suffered from anxiety/depression. Am I crazy to think that maybe gluten is bothering me? I don't have GI symptoms at all. Why does my body have to be so weird?

Just a thought look into something called Porphyria as well as the Celiac.

Hugs

Gerri

Heathers-garden Newbie

That is too funny that you mention Porphyria. I remember my aunt mentioning she wondered if her mom(my grandma) had this as I think my cousin(one with Crohn's) and my aunt were tested and had the gene. At least that is how I remember it...I will have to ask her.

RoseTapper Newbie

Interesting....I recently attended a celiac conference, and I learned that schizophrenia is common in people with celiac. When celiac is the cause, the symptoms disappear with a gluten-free diet. You stated that you've avoided gluten lately, but do you really know exactly what contains gluten? You might consider throwing yourself wholeheartedly into following a gluten-free diet to see if you'll feel better. The easiest way to do this is to follow a natural diet (no processed foods)--and remember that seasonings can contain gluten. Also, soy sauce, beer, supplements, and medication can all contain gluten. Good luck!

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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.
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      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. 
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