20 POINT GUIDANCE TO MANAGE celiac disease AND LIVE HAPPILY

[RAMSHA]

Just a compilation for reference. Please suggest if you have any adiitonal points to imoprove this. Sorry, me being a vegan, I tilted it, obviously towards a veggie diet.

20 POINT GUIDANCE TO MANAGE celiac disease AND LIVE HAPPILY

1.   Strict Adherence to Gluten-Free Diet: Adhere to gluten-free diet strictly, as even small amounts of gluten can trigger symptoms and cause intestinal damage with celiac disease. Watch out for cross-contamination. Eat lots of Fruits, Veggies, Nuts, and Non-Gluten Grains

2.   Monitoring for Nutritional Deficiencies: Regularly monitor for nutritional deficiencies commonly associated with celiac disease, such as deficiencies in iron, calcium, Vitamin B, C & D Address any deficiencies through appropriate supplementation and dietary modifications. Keep a log to ensure proper adjustments to these as needed.

3.   Label Reading and Ingredient Awareness: Read food labels and identify hidden sources of gluten in processed foods. This includes understanding common ingredients derived from gluten-containing grains and being aware of cross-contamination risks.

4.   Routine Follow-Up Care: Schedule routine follow-up appointments with healthcare providers, including physicians and dietitians to review progress, address any concerns, and adjust treatment plans as needed.

5.   Pneumococcal Vaccination: Consider pneumococcal vaccine as, it can reduce the risk of any respiratory infections. Discuss this option with your healthcare provider during routine care appointments.

6.   Dental Health: Ensure regular dental check-ups and follow oral hygiene practices.

7.   Cardiovascular Health: Maintain good cardiovascular health through regular exercise, eating heart-healthy diet, and monitoring risk factors such as cholesterol levels and blood pressure.  

8.   Bone Health: Work with the primary care physician to get a Bone density screening to identify any risk of osteoporosis, any deficiency or malabsorption of Calcium and Vitamin D. If so, suitable dietary adjustments may be needed.

9.   Nutritional Count: Ensure you are on a regular nutritional plan through counseling to maintain a balanced and nutritious diet. This involves working with a registered dietitian who specializes in celiac disease management. Discuss any deviations in diet openly.

10. Lifestyle Modifications: Adopt a healthy lifestyle that includes regular physical activity, stress management techniques, and get adequate sleep. These lifestyle modifications will contribute to overall well-being and help manage symptoms associated with celiac disease.

11. Repeat Intestinal Biopsy: Consider a repeat intestinal biopsy every 1 to 2 years initially to look for the status of small intestine mucosal damage or if laboratory tests remain elevated despite adherence to a gluten-free diet. Once the status of the small intestine shows significant healing, biopsy frequency can be reduced as needed.

12. Cross-Contamination Awareness: Be aware of how to prevent cross-contamination in the kitchen and when dining out, how to minimize the risk of accidental gluten exposure.

13. Medication Awareness: Remember even medications may contain gluten. So, do research on the list of ingredients in medicines thata re prescribed or contact the manufacturer to directly verify the same. This includes any Intravenous injections. Ensure they are gluten-free or ask for an alternative.

14. Cosmetics and Toiletries: Check for ingredients used in cosmetics and all toiletries that pollute the air or so-called freshen up the air. Ensure they do not contain gluten.

15. Remediation Action Plan: Develop an immediate action plan in case of accidental gluten ingestion, including steps to alleviate symptoms and when to seek medical attention.

16. Travel Tips: When travelling, it may be challenging to adhere to GFD so, prepare ahead of time to ensure gluten-free dining options, pack safe snacks, and unhesitatingly communicate dietary needs to service providers.

17.  Social Support Networks: Keep abreast of ongoing trends and new developments. Educate others on celiac disease for general awareness and involve actively in support groups, online forums, and reputable websites that offer guidance on living gluten-free.

18. Cross Education: Actively engage with fellow members of family and friends to educate and learn from them any ideas to improve lifestyle management or to share some ideas with them to effectively manage their celiac disease conditions.

19. Psychological Support: Sometimes dietary restrictions may be frustrating, so, try to engage with fellow celiac disease patients who have successfully managed their lifestyle and get motivated and learn how they have navigated through their challenges.

20. Enjoy Life: No disease is a blocker! So, Dont make it hard on yourself by thinking this is the end of all. But our mind does block sometimes. So, pursue any hobby to divert it and stay healthy, active and enjoy Life!

 

[Scott Adams]

It looks very comprehensive...may I ask what you plan to use this for?

[RAMSHA]

Thanks!

To your q:

Help new patients, potential candidates of celiac disease, understand and start managing their lives right off the bat without much delay. This will help get them going immediately just as they start managing their new lifestyle rather than reading a lot of materials and losing time. They could continue to do that as well.

My son, a 29-year-old married man, has just been tested for HLA-DQ2 and the IgA antibodies, and he seems potentially predisposed to be confirmed as a celiac disease patient, which may happen after the Upper GI Endoscopy in a couple of months from now.

Meanwhile, I am reading up on a lot of materials and am helping him get some summarized versions of what I read. He is pretty busy at work. We are all working together to help him manage his condition. It has been trying times to see this young man, with his sweet wife (married since 2 1/2 years), navigating through these medical challenges and adjusting to new emotions and a new style of life.

So, just some overall hand-holding is needed.

Does this make sense?

[RAMSHA]

Scott - Congratulations on your managing celiac disease over almost 28years very successfully! Impressive and inspriational too. You ahve done a greats ervice to get the community together to support each other. Hats off to your benevolence, empathy and your thoughtfulness. - Ramesh