Which advice would you give to someone who has just been diagnosed with Celiac Disease?

Name: Which advice would you give to someone who has just been diagnosed with Celiac Disease?
Creator: DiseaseMaps Editorial Team
Published: 2015-06-10UTC09:41:47.0000000

Advice for the newly diagnosed with Celiac Disease, written by people who have lived it. What they wish they had known on day one.

The most important step after a new diagnosis of Celiac Disease is to strictly eliminate all gluten from your diet while establishing a long-term partnership with a specialized gastroenterologist and a registered dietitian.

Practical Steps and Building Your Team

While a diagnosis of Celiac Disease can feel overwhelming, you are not alone. Your medical care team should include a gastroenterologist familiar with autoimmune conditions and a registered dietitian who specializes in the gluten-free lifestyle. They will help you navigate the nuances of cross-contamination, which is essential for healing your intestinal lining.

Managing Daily Life and Well-being

To manage Celiac Disease daily, prioritize label reading and kitchen safety; if you live in a shared household, consider designating "gluten-free zones" to reduce the risk of accidental exposure. Psychologically, it is normal to feel grief or frustration regarding these lifestyle changes. Acknowledge these emotions, and focus on the many naturally gluten-free whole foods—like fruits, vegetables, and lean proteins—that can restore your energy levels.

Community and Advocacy

Connecting with others who have Celiac Disease is transformative. Platforms like DiseaseMaps allow you to share experiences with thousands of others who understand the unique challenges of this condition. For caregivers, the best support is learning how to advocate for the patient in social settings and restaurants, ensuring their safety is prioritized without making them feel isolated.

Navigating Resources and Research

For financial or nutritional support, look into national foundations that provide gluten-free food assistance programs. If you are interested in the future of Celiac Disease care, you can track emerging therapies, such as enzyme supplements or vaccine trials, through the NIH’s ClinicalTrials.gov registry. Always verify that any research participation is conducted through reputable medical centers.

Disclaimer: This information is for educational purposes only and does not constitute medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

References

NIH Genetic and Rare Diseases Information Center (GARD): Celiac Disease

Orphanet: Celiac Disease (ORPHA:171)

Celiac Disease Foundation: Patient Resources and Research Updates

Author: DiseaseMaps Editorial Team

Reviewed against authoritative medical sources (NIH GARD, Orphanet, OMIM)

Last updated: 2026-04-06

Sources cited: NIH Genetic and Rare Diseases Information Center (GARD): Celiac Disease · Orphanet: Celiac Disease (ORPHA:171) · Celiac Disease Foundation: Patient Resources and Research Updates · WHO

Medical disclaimer: This information does not substitute professional medical advice. Always consult your doctor before making health decisions.

Source: DiseaseMaps.org

Posted May 8, 2017 by JJHK 1050

Začít jíst bezlepkovou stravu, bez pšenice, ječmene, ovsa a žita

Posted May 27, 2017 by Lucy Baudysova 2440

Join a local support group or an online group. Talk with others who have celiac disease and who have been living with celiac disease after diagnosis for several years.

Posted May 31, 2017 by FlorenceK 2545

Don't be disheartened by the idea of going gluten free. Try and eat as much natural food such as fruit & vegetables. Try to avoid the "free from" sections of the supermarket as much as possible, these foods are loaded with sugar & fat. Make them treats more than staples. Read labels carefully, always read labels for allergens.

Posted Sep 4, 2017 by Emyr 2500

Try to stay positive even when glutened. Network with other celiacs and join a support group. As soon as I was diagnosed the attitude I took was: as medical conditions go it's not the worst thing to happen. My condition is controlled by being careful what I eat. I don't have to take any medication for it and outside of food I can have a perfectly normal life. If you keep that in your mind it won't feel too bad. Get used to reading the ingredients on all packaged foods, even the ones that seem safe, and check that the label doesn't say things like "may contain" or "packed in a facility that handles" gluten on a different part of the label to the allergens and ingredients.

Posted Sep 11, 2017 by Eamon 2500

This can be a daunting change in your life. Seek out support in other Celiacs and friends/family. Practice reading labels to see where gluten may be hidden or labeled as something other than wheat, eye, or barley.

Posted Sep 12, 2017 by JJinPA 2070

Get online and join some facebook group support. Watch some youtube videos and look at blogs. If you have a local in-person support group go to it. they are very helpful.

Posted Nov 12, 2017 by Stephanie 2690

Be positive everything will be ok

Posted Jan 28, 2019 by Iveta 4700

Stay away from dairy for a few weeks until your villi heal. Avoid restaurants when ever possible. Purchase a NIMA tester to test your food. Don't buy a lot of gluten free substitute products like cookies - they have fewer vitamins and more sugar.

Posted Jun 21, 2019 by mcbphd1 2500

Eu sei que parece o fim do mundo, mas por experiência própria, não é! É o início de uma nova vida. Aprenda sobre a doença e sua condição, dieta sem contaminação cruzada, coma saudável, se conecte com outras pessoas que vivem a mesma realidade, aprenda novas receitas e alimentos, procure por bons profissionais para te acompanhar (gastroenterologista, nutricionista,psicólogo) preferencialmente que entendam de DC.

Posted May 28, 2025 by Fernanda de Oliveira 3020

Translated from spanish Improve translation

As you do a life as normal as possible, to learn to eat things without gluten, and you can inquire in any celiac association, where guide and inform very well. There are increasingly more gluten-free products and more bars and restaurants prepared for celiac patients.

Posted Feb 23, 2017 by Ana 1111

Translated from spanish Improve translation

If I had everything gluten-free is at your fingertips, you would not have to give any advice.
Currently, it is unknown all of the disease... the company does not know anything practically and falling the world over... Advice? Subscribe to your Association that they give you the updated list of food... and that, if there is a psychologist of the SS, they're going to accept his new condition of celiac...
Otherwise, I think that in the network all is not as bad or as misleading. Of all there is to it.
I was 4 years old when I was diagnosed and it was my mother who truly did it all alone. I would have liked that, would have had some support from people who are prepared.
So, perhaps my mother would not have thought that I was cured with 12 years.

Posted Feb 23, 2017 by Merche 1187

Translated from portuguese Improve translation

Seek counseling and take care of your diet, the more normal life.

Posted Mar 29, 2017 by Renato 1260

Translated from portuguese Improve translation

Calm! It is not the end of the world!
Your relationship with food will change, but it does not mean that it is for the worse. It is just different. In the beginning it will seem that everything has gluten, you go wrong diet, you will find that just a little won't hurt (but it does, see?). Only that after, you will be sure that it is much better to live with a diagnosis that barely move.

Posted Mar 30, 2017 by nessarrpp 1050

Translated from french Improve translation

See a dietician for the diet and contact the Afdiag it is the French association. Don't be afraid to make errors in plan it is like this that we learn.

Posted May 26, 2017 by Mathilde 1170

Translated from portuguese Improve translation

First of all stay calm, read about,
Seek to know the foods and ingredients allowed, to share with your friends and family and to face the changes of habits of the heart open.

Posted May 29, 2017 by Claudecir 1140

Translated from spanish Improve translation

Have a lot of patience, you will have to explain the same thing many times. Even to the same people. You can make your body change, I changed, I changed the hair (I ruffled a lot!), the skin was very smooth and fine and now are not, although now I don't have dermatitis), engordé (a lot!, but it was very very thin). Disappeared my anemia, I changed up the mood!
You should be aware of, even the most absurd things are gluten (tea, spices, lentils!) and little by little you'll learning. You will spend hours doing the buying that before you did in 30 minutes, because now you have to read all the labels or look for the labels "gluten-free". It will hurt the pocket (it's quite expensive) and perhaps you choose to find bread recipes on the internet (there are thousands, is a matter of "trial and error"), but at least it's a disease that is not treated with drugs. You can use pre-bioticos or pro-bioticos to recover when you have a crisis, say that help to regenerate the intestinal flora.

Posted Aug 30, 2017 by Vanesa 1500

Translated from spanish Improve translation

First of all, go to a association for sick celiacs because that is where we will teach you many things you don't know.
Be extremely careful with cross contamination.
Learn a lot about the issue in order not to make mistakes and try to improve as fast as possible.
Do not rely on the labeling which is why it is important to approach reading the food that is most reliable for a sick celiac.
Avoid as far as possible to eat in restaurants because it can be cross-contamination.

Posted Aug 30, 2017 by Liliana Rascon Estrada 900

Translated from spanish Improve translation

For someone newly diagnosed the first thing I would say is that little by little they are going to accustom you to learn well that is the disease to know how to manage yourself, don't worry but be concerned. There is a lot of misinformed people and will listen to all, that is why it is important to be well informed; and that if you follow the gluten-free diet strictly is going to be a person totally normal

Posted Sep 4, 2017 by Mónica 1900

Translated from spanish Improve translation

That you take it easy, now everything is super well explained, that there is a lot of help with the internet, and that will get used

Posted Sep 7, 2017 by Elena 1600

Translated from french Improve translation

To change his habits and to follow the gluten-free diet without isolating themselves from the company

Posted Sep 14, 2017 by Karima 5050

Translated from portuguese Improve translation

Calm , patience and a lot of determination

Posted Sep 18, 2017 by Adriele 1000

Translated from portuguese Improve translation

Consult a nutritionist, well-read the labels, know what products may contain gluten and those that can contaminate. Such as pet food, soap, shampoo, is in many food.

Posted Oct 3, 2017 by Cristina 1000

Translated from portuguese Improve translation

My advice is: work acceptance, don't isolate yourself, seek support, get to know groups of people who have the same disease; to study the disease; download brand lists of safe products or app to assist. Pay attention to the frames of binge eating that you may have (for every food restriction generates compulsion), and you should seek help from professional nutritionists, psychologist's and medical.Talk to people about it, report your experience. Follow firm, knowing that this restriction is necessary for the well-being and health, therefore, it's worth it. Take care of yourself.

Posted Oct 23, 2017 by Giulia 2550

Translated from portuguese Improve translation

I would tell her that from this day forward q her life will change for the better, since we will harm our body and cause many illnesses and pass on the healthy.
I would say that the beginning of the diet it will be the beginning of new discoveries and friendships as the question of power will select friends true.
I would say also that it is perfectly possible to achieve excellence in the crazy alchemy gastronomic

Posted Oct 30, 2017 by Andreia l C cernach 1000

Translated from spanish Improve translation

Learn a lot about the disease, participate in social networks where there are communities of people with celiac disease to resolve general enquiries (the health only with the doctor),get used to always read the labels of the products. You can eat almost all , but preparing one or buying certified products. Not to do the case when another person says "as a little , if you dont want to do wrong" or "poor can't eat anything" because that is not true.

Posted Nov 2, 2017 by danay 2850