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Recently Diagnoised With celiac disease


Joe

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Joe Newbie

I have been on the" gluten free diet' for two weeks and signs of recovery has started. I saw a dietitian today and she was amazed at the knowledge I had in such a short time. Thanks to this website and several others I have visited I can now relate to others who are further down the road than I am.

I have tried making my own bread using the approved flower mixtures and lists of approved ingredients. It tastes awful and I" toasted it" to hide the taste. Am I doing something wrong or is this the best it gets?

What is the average time for the skin blisters and rashes I have to disapear quietly into the night! My scalp is a battlefield and I have been using a medicated shampoo for the last two weeks with no change. I need some help to locate the best product available to win then war and return my scalp to normal!!

I am brand new at this and hope my questions make some since and that I get some helpful advice soon!

This site has a lot to offer celiacs who need to learn what it takes to get healthy and stay that way! I am a 60 year old male who's body is not willing to give up the fight!! Go Irish!

jkelly2315


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teebs in WV Apprentice

Hi Joe. Glad you are starting to feel better. There is a prescription - Dapsone - that has definitely helped me, as well as many others. However, there are side-effects and you need to have your bloodwork monitored while you are taking it. I have been taking it since October and my breakouts started clearing up after just a couple of days. This, in conjunction with a gluten-free diet should make you feel soooooooooo much better!

There are also other medications available, but I have not tried them. Without medication, it can take up to 6 months to completely clear (from what I have read, and I am by no means an expert). Others on here will chime in and give you some good advice.

As far as the bread goes, I haven't found any that I think are good. I tried another one this weekend - one that I have seen several people rave about - and I didn't like it. I would rather go without than eat that stuff! But, I hear that you do get used to it - I'm just not there yet.

Good luck to you - and welcome!

mamaw Community Regular

Hello

Stick to it and as time goes on you will begin to feel better & better......

I love the bread mix from breads by anna. It's not towntalk white but an earthy bread. I make it in a bread maker....Also Glutino makes good bagels, Everybody Eats in Brooklyn has the most wonderful crusty rolls and baguettes in the world but pricey. I have to mailorder almost everything as thee is not much where I live in western Pa.....I use betty hagman four bean flour when making cookies and sweet breads with no changes to my old wheat recipes...

I have been researching by trial & error and have spent alot of money doing it but I now know where to buy the best food stuff at there....

Its a shame the US is so far behind other countries on this issue........ We have four of us eating gluten-free - 2 are under 7 yrs old so I try to keep their interest peaked with new goodies.

mamaw

lhasapets@zoominternet.net

nettiebeads Apprentice

Be sure to check all of your toiletries for gluten. A lot of the lotions that promote soothing have oat in them. Quite a few have wheat, wheat germ or wheat starch. Did you get yourself a dedicated toaster? I now have one, a Christmas present from my MIL. And check ALL labels. Since the new labeling law went into effect I'm finding that lots of things I thought were safe are "made in a facility that also processes wheat" :angry::angry::angry:

Give yourself time. It takes awhile for the damage to occur, so likewise it takes time to heal. And since everyone's physiology is different, everyone has different healing rates. Just keep at it.

Annette

Joe Newbie

Be sure to check all of your toiletries for gluten. A lot of the lotions that promote soothing have oat in them. Quite a few have wheat, wheat germ or wheat starch. Did you get yourself a dedicated toaster? I now have one, a Christmas present from my MIL. And check ALL labels. Since the new labeling law went into effect I'm finding that lots of things I thought were safe are "made in a facility that also processes wheat" :angry::angry::angry:

Give yourself time.

I want to thank you for your reply to my questions and concerns. Everyday is a new adventure for me as I wair for new dvelopments with this disease. I am dizzy, somewhat confused and my strength is not what it should be. I know in time with this medication I will eventually turn the corner but it's the wait time that is frustrating me.

I have open mind and willing to stay on the gluten free diet becuase once this disease is under control I do not want to go backwards! My family is suupporting me and will do whatever it takrs tom make me feel better about my condition.

I go for my third blood test tomorrow and hopefully I will be improving. My Dr. diagnoised the disease right away and got me started on the road to recovery. I have confidence in him but will get a second opinion and new testing next month just as a backup! If I am to be on this diet for life I want all test data to be confirmed by two different Drs. and labs. I will feel better knowing this!

Live long and prosper!

Joe

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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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