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Celiac Disease in Puerto Rico

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Image Source: kidshealth.org

Image Source: kidshealth.org

This post is very personal and I hope it is very helpful to you or anyone living with Celiac disease who plans to either visit or live in Puerto Rico. Living with Celiac disease in Puerto Rico is not easy, not easy at all. There are many reasons why that is the case and I’ll try my best to explain.

First of all, very few people in Puerto Rico have any idea what Celiac Disease IS! Honestly I feel like there is absolutely no awareness whatsoever, and the experts think that the reason is because Celiac disease is mainly a USA/Europe problem, but one that we don’t see in the Caribbean. I’m telling you that there are so few cases reported that our GI doctor, with all his many years of experience, has only seen one single case of Celiac disease in Puerto Rico, we were the second. On top of that, our kid’s pediatrician, who is now about to retire, confessed that she had never seen a single case of Celiac disease.

So needless to say that the general public, restaurants, or even HOSPITALS, are generally not equipped to deal with someone with Celiac disease, gluten cross-contamination is EVERYWHERE. Not kidding, even at a local “Health Food store”, I was about to order lunch from their deli, I was told the Lasagna was gluten free. Was it? NOPE! The pain began minutes after eating it, then I call and asked for the brand of Lasagna pasta they use, and sure enough it did have wheat. Remember, this was at a “health food store”! They just didn’t have a clue!

What can you do?

Well, there are in fact a few restaurants with a gluten free menu, most of those restaurants are big chain places like P.F. Changs or UNO Chicago Grill. However they generally do not take into consideration the cross-contamination problem that someone with Celiac disease needs to pay attention to. So if you are living with Celiac disease in Puerto Rico you are going to have to cook at your house 99% of the time.

If you happen to have developed a taste for Puerto Rican cuisine, I’m happy to say that most of the dishes can be cooked gluten-free, some of the Puerto Rican foods are gluten-free anyway. The limitation is that you may have to make sure that the condiments are in fact gluten free, for example the tomato sauce, make sure it is the organic kind, we found out the hard way that the GOYA tomato sauce may contain wheat, especially since they have wheat products in their facility.

So you will have to be a “Gluten Detective”, searching for certified GF products. Costco does a very decent job at providing GF products, in fact the best price for Udi’s GF bread is found at Costco.

Need a support group? At this time there is no Celiac support group in Puerto Rico. I am actually considering starting a Celiac.Org chapter here for those of us living with Celiac disease in Puerto Rico. There is however many Autism support groups, most of which decide to live without gluten, so they share recipes and are a voice against gluten in Puerto Rico, they have fought for support and proper labeling of products that contain gluten so the shopping experience at the grocery stores is a bit easier.

So there you have it, living with Celiac disease in Puerto Rico is not easy, it is very hard. I have been ridiculed and made fun of simply because most people think this is all BS. But, just make sure you eat at home and keep your house completely gluten-free. Doing that IS possible, socializing though is very difficult if food is involved. Oh did I say expensive? Yes, very expensive, our grocery expenses nearly tripled after we had to go gluten free.

Let me know if you are living with Celiac disease in Puerto Rico (or know anyone)! Would love to share stories!

Jay-Webmaster

Author: Jay-Webmaster

Jay is an Atmospheric Physicist and Massage Therapist who was born and raised in Puerto Rico but went to college in the US before moving back to Puerto Rico. Creator of NewToPuertoRico.com and the new forum NewToPuertoRico.com/forum

19 Comments

  1. I would love to know if you start a support group. My 7 year old has what’s called Food Protein Induced Enterocolitis. He must eat gluten and dairy free. Reading the comments above convinces me to get the genetic testing done for celiac. We also homeschool and are moving to the island in June. I’d love to connect more about your experiences on both fronts.

    • Jay-Webmaster

      Well, I would love to start a support group, but I would not be able to commit to the time that it requires. I definitely would if I didn’t have to have a full time job though.

      However, we would me more than happy to help you personally if you wish. Email us at the webmaster account and maybe we can schedule a phone conversation or something so we can address your questions.

      One thing though, this is not the most “Celiac-Friendly” place, it is getting slightly better but we are still WAY behind the US, which I actually consider to be WAY behind many other countries such as Canada, Australia, and New Zealand, as well as most of Europe. So, just so you know, you will be cooking a lot here, taking snacks wherever you go and some major planning will be needed for any long day trips. And spending lots of money at the grocery store and Costco.

      We’ll be more than happy to help you, get in touch with us and we will talk.

      Take Care

  2. Thank you so much for this post! For your whole site actually, it’s incredibly helpful!

    • Jay-Webmaster

      It’s my pleasure!

      Let me know if you need any more information on Celiac Disease and Puerto Rico. This is a topic I am particularly knowledgeable about. Take Care!

  3. I moved to puerto rico amost a year ago ,before moving was tested for a few things and came up positive for celiacs ,so i had to give up almost everthing i enjoy that includes beer lol, it is very expensive and to add that im also a chef at a high end restaurant to boot , contact me i could use some resourses on the island
    Michael

    • Jay-Webmaster

      Living with Celiac Disease in Puerto Rico is very difficult, there is no awareness whatsoever. You need to do lots of research and make sure you are being extremely careful with cross contamination. Let me know if you need help. I buy most of my grocery items at Costco and the health food stores. Very expensive but it must be done.

  4. Oh my God, finally I have found people who understand my frustration! I need help!!! In & out of emergency rooms with my mother who is suffering with what I believe to be Celiac. Emergency rooms, doctors REFUSE to give me a ref. to test for it EVEN AFTER I tell them my sister has it. All I keep getting is, take her to pychiatrist!!!! Where can I take her in SJ to get tested without a script from a doctor? Please help, 20 years of being dismissed by doctors as BEING CRAZY,ITS ALL IN HER HEAD.

    • Jay-Webmaster

      Oh wow! I’m so sorry to hear that!!!

      But in order to get the test you need a doctor’s order or prescription. Then take that to the lab to get the blood test.

      In my case, I just went to the primary physician and mentioned the concern and I got an order for the blood test. That was it. I was then referred to an Gastroenterologist for the follow-ups and further testing. But it was actually pretty painless in that regard.

      However the Celiac Disease awareness in PR is ZERO! So I’m not surprised that you’ve been getting the runaround on that. Worst part is that in over 80% of the cases, the disease is asymptomatic, so even when there’s an awareness, people don’t test for it.

      If I were you, I would go online, get as much information on the symptoms as possible, get info on how the genes play a role and if someone in your family has it then you are much more likely to have it as well. Go to the primary doctor with that info and ask for a prescription to be tested for Celiac disease. Your doctor may or may not know the codes for that so if I were you I would search online for those codes as well, make sure the doctor has no excuse for not testing because some doctors may not want to test but it is because they just don’t know what it is and they don’t want to seem stupid. My doctor had to search for the codes in the reference books, I was ok with that, some doctors refuse to say that they have to look it up.

      So, get info on the symptoms, genetic links, your mother’s history, and what needs to be tested (tTG IgG or IgA, something like that I’m not sure). If he/she refuses I would challenge the doctor and as if he/she even knows what Celiac disease is. I wouldn’t leave until I have the prescription for the blood test.

      FYI, when I was tested I had Triple-S insurance and they DID NOT cover the test at all. I had to pay out of pocked which ended up being $130 for the 2 blood tests.

      I now have Humana insurance and they do cover it. So check with your insurance company, you may have to pay it out of pocket.

      If it becomes impossible and no one would order a prescription for the Celiac disease blood test, then you can always just change the diet and remove all gluten (I had to remove all dairy as well) and substitute that diet with a healthy whole foods (not processed) gluten-free diet.

      I wish you the best of luck! Let me know if I can be of service!

      Take Care!

    • She needs a colonoscopy and a biopsy to confirm celiac

      • Jay-Webmaster

        I don’t think I’ve ever heard of anyone doing a colonoscopy for Celiac, I believe the standard procedure is endoscopy, and in all honesty what you should be doing is the genetic testing if there’s suspicion and the initial screening test came out positive.

        • Do you know which genetic test or the name? Our gastro dr. was attempting to find out for our toddler but never came back with a name. We need to get authorization from our insurance first.

          Also my husband has celiac disease and us suffering greatly with the dermatitis herpetiformis on his hands. Change of diet is not necessarily going to work given that he is a professional chef and baking the best bread you will have on this island is part of his daily tasks. Not even gloves help. He is going crazy with the itching and cracked skin. Do you have a dermatologist or a physician that you can recommend?

          • Jay-Webmaster

            Hello Angie,

            I believe the genetic tests are HLA-DQ2 and DQ8. You have to do it through Quest Diagnostics.

            This is the first time I hear of Dermatitis Hepetiformis due to contact with wheat, must be pretty bad, so sorry to hear that. In our case we had to be Gluten detectives and also had to remove all dairy, meat, and corn plus clean out our diet a lot, so much less processed foods and much more clean whole foods; THEN the dermatitis and other ailments got better.

            I do not have a dermatologist but I must confess that Celiac disease here is not known at all compared to other places, the rate of Celiac disease among Central and South America and the Caribbean is less than half as that in the U.S. According to the University of Chicago (I still don’t buy it) so there is basically no awareness of it at all here.

            Get those genetic tests done, I hope your insurance covers it, my current insurance did but my previous insurance did not.

            Good Luck

  5. Jay, Can you help me figure out how to find a pediatric endocrinologist to deal with juvenile diabetes? I haven’t had much luck,

  6. I really understand your concern about living in Puerto Rico with Celiac Disease. I was diagnosed a year ago. Since that day I began to seek information. I was referred to a nutritionist who could not provide more information than I already knew. In Puerto Rico there is total ignorance of this disease. Sometimes I felt totally frustrated! People have told my husband that this is on my mind. Worst of all is that now I feel worse because my 16 year old son was just diagnosed with the disease. This disease is inherited. There are many people walking around who are unaware they have the disease, as there are more than 57 diseases associated with celiac disease. I found this page by searching if Puerto Rico had a support group because on September the National Celiac Awareness Day is celebrated in the U.S. I hope to help in some way so this disease can be known and it is not so difficult to live with Celiac in Puerto Rico. Pardon my english.

    • Jay-Webmaster

      Marian:
      This is a very important topic for us. There is no support group per se but I would really like to start one. I have also been told that everything is on our minds. I must warn you though, if you haven’t yet, you must change your entire house to a gluten-free household. I am not kidding. We get tested every 3-6 months for reactions and antibodies and we are incredibly careful, yet sometimes we still seem to get contaminated with gluten. We are now eating at home 100% of the time because no restaurant with a “gluten free menu” will actually take the necessary precautions, and this has been shown in our blood tests.

      If you need someone to talk to or help with anything, please send us an email to the webmaster account or post more comments here. Maybe you can help us start that support group? I wish you the best of luck and please keep in touch.

      Take Care

    • Please Marian tell me where u went to get the test. 20 years & all my mothers doctors keep sending her to a psychiatrist.

  7. Wow, seriously, this post is a huge eye-opener and extremely well written.

    Thank you so much for the information about the lack of awareness of celiac disease in Puerto Rico. You should really open that support group chapter, if not you then who?

    Again, thanks for the info.

    • Jay-Webmaster

      Thanks Robb!

      Yeah the truth is that there is SOME awareness about celiac disease in Puerto Rico but is it very very little. Just yesterday I found a place that does some gluten-free desserts in a dedicated area to avoid cross contamination, but this was the first time I had ever heard of such a place and I have not visited the location so I can’t say that it actually meets my standards. However, it was nice to see that at least one little cupcake place knew that the gluten free foods had to be completely separate from the rest.

      I’m seriously thinking about opening that support group chapter, I just don’t know if I’ll be able to dedicate the time it needs, you know, full time job, family, website, etc. But I know it is important and I’m really thinking about it. I’ll keep everyone posted.

      Thank you for the comment.

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