Kind of confused…

[Sabaarya]

Hi everyone!

Haven't been here for a while. So Im trying my best with gluten-free diet. I do buy gluten free cookies,chocolates and pastries and also I eat cheddar cheese and goat cheese as well, I know that a lot of people with celiac won’t eat those. So since I’ve started my diet I felt a little improvement, but it keeps changing . I might feel ok for couple of days and then again feeling some symptoms. I’ve taken iron supplements for a month and then stopped it because I’ve read somewhere that iron supplements might contain hidden gluten. But I continue to take  gluten free B complex,vitamin D. It’s been 2 days that I feel light headed and dull pain in my upper right abdomen. I haven’t had a pressure in my ear for a month,today I felt it again. I’m not sure if my iron levels improved. I’ve been diagnosed 2 months ago and took iron only for 1 months. I hate going out because every time I get more and more disappointed in gluten free restaurants. I’m in London now, will go back to LA in 1 month,maybe there restaurants provide better gluten-free services. Last week we went out and I did my research before to make sure that there are gluten-free restaurants in Covent Garden,got very excited and happy and said to my sister finally I found a lot of options we can go out and have fun because I will be able to eat with you guys. So we went to restaurant, I was told that they have a lot of gluten-free options. So I ordered whatever I wanted and asked the waitress if  is it 100% gluten-free,she said hmmmm are you sensitive to gluten? I said I do have celiac,she was kind of surprised like she never heard about it and called her manager. Manager came and said I’m sorry but there is basically no gluten-free definition in our restaurant,we have 1 kitchen and prepare all the foods in the same kitchen. I was soooooooo angry and asked him why would you put gluten-free in front of every food in your menu,that’s not right!?!? He said well I’m trying to be honest with you and it’s better for you to not eat anything here. Wow!!!  I really don’t understand. So now I know that it’s not safe to eat outside at all! They might put gluten-free for marketing but they make all of them in the same kitchen,not even trying to create a separate kitchen for people who has celiac or allergy to gluten. Anyway hope it’s better in US.

I’ve purchased Jenifer Esposito’s book. American actress who’s been struggling with undiagnosed celiac for more than 20 years. It’s a lot of recipes for celiac,anti inflammatory and allergies and the first thing she mentioned in her book is forget about eating outside. But it’s really frustrating. I’m visiting my sister now in London,everyone gets upset that I can’t go out and can’t eat and have fun. What kind of trip is that(((. For example today her friend invited us to Spanish restaurant and she said there is a gluten-free menu but since I’ve had that crazy experience I  didn’t go with them and now I’m home by myself. I’m not a crazy fan of eating outside, I don’t like that much,but it’s kind of ruins my social life . If I go out I have to starve until we come back home. Oh my god that’s a very long post))

does anyone else has ups and downs in symptoms or I should have been recovered in 2 months already?

Saba

[Scott Adams]

Welcome to the forum!

I'm sorry to hear that you're still having issues, and to me, it sounds like your diet may not be fully gluten-free, especially if you've been eating in restaurants. The ugly truth about most restaurants, even if they have a gluten-free menu, is that cross-contamination is still common, and the staff at most restaurants has a high turnover rate, so it is doubtful that proper food preparation and training procedures for gluten-free food might be passed on correctly over time.

There are dedicated gluten-free restaurants, especially in large cities, so perhaps try to search for those.

Some of us on this forum take GliadinX enzymes (they are a sponsor here), as they have been shown in many studies to break down small amounts of gluten in the stomach, before it reaches your intestines. I take them whenever I eat out (but again, you may want to avoid eating out, at least until you get everything under control and recover), and especially when I travel.

Last, be sure to find a gluten-free iron supplement, as it sounds like you may be anemic and need it to recover.

[Sabaarya]

  On 10/15/2021 at 5:54 PM, Scott Adams said:

Welcome to the forum!

I'm sorry to hear that you're still having issues, and to me, it sounds like your diet may not be fully gluten-free, especially if you've been eating in restaurants. The ugly truth about most restaurants, even if they have a gluten-free menu, is that cross-contamination is still common, and the staff at most restaurants has a high turnover rate, so it is doubtful that proper food preparation and training procedures for gluten-free food might be passed on correctly over time.

There are dedicated gluten-free restaurants, especially in large cities, so perhaps try to search for those.

Some of us on this forum take GliadinX enzymes (they are a sponsor here), as they have been shown in many studies to break down small amounts of gluten in the stomach, before it reaches your intestines. I take them whenever I eat out (but again, you may want to avoid eating out, at least until you get everything under control and recover), and especially when I travel.

Last, be sure to find a gluten-free iron supplement, as it sounds like you may be anemic and need it to recover.

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Thank you : do I need prescription for gliadinX?

[Scott Adams]

No, it's sold as a supplement because the main enzyme in it called AN-PEP has been used for decades in the beer brewing industry as a clarifying agent, and it thus widely available. This fact makes it something that can't be patented and protected as a prescription drug, thus, pharmaceutical companies are not likely to invest in it as it is already being sold without a prescription.