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How Long Before Improvement?


concernedmamma

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concernedmamma Explorer

Hello everyone!

How long were you gluten free before you saw improvement? We received confirmation of Celiac for my son (age 4.5) on March 25. We have been doing our best to be strictly gluten free since then. His main symptom is diarrhea and we have seen no improvement in this department whatsoever! One day he did have a somewhat 'normal' stool, only to be followed by some of the worst diarrhea that we have ever experienced!!

We are switching is multivitamin since the ever-so-not helpful company will not give me an answer whether or not it is gluten free. Other than that, I can't imagine where he would be getting gluten. I was hoping we would see some improvement over Spring break so I would have a bit of an idea if he was getting gluten at school.

Am I being too impatient or do you think we are getting cross contamination from somewhere?

Thanks for your help!

Kim


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rachel-gf Newbie

For me: mentally felt better within a week. Intestines felt better within 2-3 weeks. 2 months later: significantly improved. But my celiac tests are negative.

I think it depends on what other issues you have and how severe your damage is.

I tried to speed up my recovery by taking vitamin D, vitamin B complex, magnesium, and calcium.

pufffee Apprentice

Hello everyone!

How long were you gluten free before you saw improvement? We received confirmation of Celiac for my son (age 4.5) on March 25. We have been doing our best to be strictly gluten free since then. His main symptom is diarrhea and we have seen no improvement in this department whatsoever! One day he did have a somewhat 'normal' stool, only to be followed by some of the worst diarrhea that we have ever experienced!!

We are switching is multivitamin since the ever-so-not helpful company will not give me an answer whether or not it is gluten free. Other than that, I can't imagine where he would be getting gluten. I was hoping we would see some improvement over Spring break so I would have a bit of an idea if he was getting gluten at school.

Am I being too impatient or do you think we are getting cross contamination from somewhere?

Thanks for your help!

Kim

gluten-free for three weeks now and stools are on and off and far as substance. I mainly go once a day. I am confirmed celiac through blood and Endo. My issue is belly being constantly bloated and gurgling. That has yet to subside. Working on new strategies for that though like lowering lactose intake.

masterjen Explorer

From what I have learned, children and adults often respond very differently during the recovery phase, in the sense that adults can take much longer to recover and are more likely to have more damage to their small intestines as well as other health complications (because they've been experiencing various symptoms for a much longer time before finally being diagnosed). I think it would not be valid to ask adults how long it took them to recover and use this as a guide to apply to your son. For what it's worth, I'm in my 6th week, and no where near recovered. But, having said that, I am in my 40s, and therefore have likely been experiencing symptoms of celiac for a very long time before I got so sick I finally sought medical help.

WheatChef Apprentice

If you saw symptoms get worse then you're on the right path! I know it sounds weird but a large number of people who go gluten free go through a withdrawal period while their body is adapting to a new non-poisonous environment. It varies from person to person but gluten can throw many different hormonal/regulatory systems off balance and they don't all immediately swap back to the "normal" levels when you remove the trigger.

That multivitamin sounds really suspect, if a company is giving you the run around on any of their ingredients then that is a company that is not safe for anyone to consume from. Try store brands, most major supermarket chains can provide you with a list of all of their gluten-free store brand items.

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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/ 
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      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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