Working

[Noahs Dad]

My 16 year old wants to work.  Except he has that Celiac on steroids.  For example, he was on a gluten reduced diet when he was tested and his blood test was over 380.  He can’t have cross contamination including other peoples body fluids (if he shakes your hand and your hand is remotely moist, he flares up).  He is so extreme, he has to wear a mask and gloves everywhere he goes.  Contamination from eating food from home in the school cafeteria has caused flare ups.  He now won’t drink or eat anything outside of the house (nothing at school).  We have to make sure all soaps are not contaminated.  He can’t eat meat that has been sliced at a grocery store like Stop & Shop.  He can’t eat meat that comes from a farm that fed the animal anything with gluten in it.  He’s been hospitalized multiple times in the 4 1/2 years since his diagnosis due to extreme flare ups from environmental contamination.

 

when can he work?  Grocery stores and fast food chains are out.  Any suggestions?  We live in CT (SECT) so the labor laws of CT and RI would apply.

[Luvlcy1]

34 minutes ago, Noahs Dad said:

My 16 year old wants to work.  Except he has that Celiac on steroids.  For example, he was on a gluten reduced diet when he was tested and his blood test was over 380.  He can’t have cross contamination including other peoples body fluids (if he shakes your hand and your hand is remotely moist, he flares up).  He is so extreme, he has to wear a mask and gloves everywhere he goes.  Contamination from eating food from home in the school cafeteria has caused flare ups.  He now won’t drink or eat anything outside of the house (nothing at school).  We have to make sure all soaps are not contaminated.  He can’t eat meat that has been sliced at a grocery store like Stop & Shop.  He can’t eat meat that comes from a farm that fed the animal anything with gluten in it.  He’s been hospitalized multiple times in the 4 1/2 years since his diagnosis due to extreme flare ups from environmental contamination.

 

when can he work?  Grocery stores and fast food chains are out.  Any suggestions?  We live in CT (SECT) so the labor laws of CT and RI would apply.

Hello,

 I’m so sorry your family is going through this.  It’s a little unconventional, but I would look into medical trials.  I would ask his doctor specifically if there is a place that would possibly be able to study his case and pay him for his time. I know the idea of making your child a “lab rat” is unappealing, but his case is extreme and perhaps they could actually help him and give him some hope for the future.  I wish you the best of luck

[Wheatwacked]

2 hours ago, Noahs Dad said:

Except he has that Celiac on steroids.

 

This has got to be a hard time for him.  What are the doctors saying about his condition?  Any testing for nutrition deficiencies? Vitamin D blood test.  Consults with a nutritionist knowledgeable in Celiac Disease?

Has he been retested since four and a half years ago? Have they done an endoscopy/biopsy for Celiac?

Dr Fasano came up with a list of foods to eat and to avoid for those who seem to not respond to the Gluten Free Diet.  

Products allowed/disallowed in the Gluten Contamination Elimination Diet

What do you mean by "flair ups", what kind of symptoms?

Between the malabsorption caused by the Celiac autoimmune response and food avoidances, he has malnutrition.  Fixing that has to be Job 1.

Are you a gluten free household?

 

 

 

[Scott Adams]

The very first step is to verify that his diet is indeed 100% gluten-free. Perhaps there is something he's missing? A medication? Does he ever eat out? Double checking everything never hurts.

If his diet is indeed gluten-free, he may need to be evaluated for Refractory celiac disease. We have a category of summaries of medical journal articles at the link below:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/refractory-celiac-disease-collagenous-sprue/

It's possible he may need to take medication if it is determined that he has it:

 

[Guest]

On 11/27/2023 at 4:34 PM, Noahs Dad said:

My 16 year old wants to work.  Except he has that Celiac on steroids.  For example, he was on a gluten reduced diet when he was tested and his blood test was over 380.  He can’t have cross contamination including other peoples body fluids (if he shakes your hand and your hand is remotely moist, he flares up).  He is so extreme, he has to wear a mask and gloves everywhere he goes.  Contamination from eating food from home in the school cafeteria has caused flare ups.  He now won’t drink or eat anything outside of the house (nothing at school).  We have to make sure all soaps are not contaminated.  He can’t eat meat that has been sliced at a grocery store like Stop & Shop.  He can’t eat meat that comes from a farm that fed the animal anything with gluten in it.  He’s been hospitalized multiple times in the 4 1/2 years since his diagnosis due to extreme flare ups from environmental contamination.

 

when can he work?  Grocery stores and fast food chains are out.  Any suggestions?  We live in CT (SECT) so the labor laws of CT and RI would apply.

I have the disease severely myself. I can’t be exposed to gluten in the air, even people making toast affects me. Can’t eat outside the house, etc. I’ve been able to work at a few places so here they are, best to worst. 
 

1. offices. Any kind of office job is great especially if there’s a lobby or outdoor area where you can eat lunch, a place that isn’t the lunchroom or break room. 
 

2. retail clothing and game stores. Mostly safe though they sometimes “reward” staff with pizza or donuts 

3. Hardware and home stores. They don’t carry food or want it around the products 

[Noahs Dad]

28 minutes ago, TheOtherCatharine said:

I have the disease severely myself. I can’t be exposed to gluten in the air, even people making toast affects me. Can’t eat outside the house, etc. I’ve been able to work at a few places so here they are, best to worst. 
 

1. offices. Any kind of office job is great especially if there’s a lobby or outdoor area where you can eat lunch, a place that isn’t the lunchroom or break room. 
 

2. retail clothing and game stores. Mostly safe though they sometimes “reward” staff with pizza or donuts 

3. Hardware and home stores. They don’t carry food or want it around the products 

Pretty much what I expected.  He wants to try to work at the aquarium for now.  His adult career possibilities are so limited.  He’s looking at engineering or law school.

[Guest]

4 minutes ago, Noahs Dad said:

Pretty much what I expected.  He wants to try to work at the aquarium for now.  His adult career possibilities are so limited.  He’s looking at engineering or law school.

 

4 minutes ago, Noahs Dad said:

Pretty much what I expected.  He wants to try to work at the aquarium for now.  His adult career possibilities are so limited.  He’s looking at engineering or law school.

I’m sorry that I can’t give you much hope. When I was younger I went undiagnosed for a long time, and worked at a variety of places. I lost my job constantly because I had to take too many sick days. As of about ten years ago, I can’t work a traditional job at all. I don’t really blame the employers. I truly am not a consistent employee. I try really hard but I’m in pain or passing out often, and even with lifelong management there is no cure. 

[Wheatwacked]

Welcome Catharine

[knitty kitty]

It's worrisome you all still continue to have health problems for so long after a Celiac diagnosis!

Celiac causes vitamin and mineral deficiencies because of the damage done to the small intestine's lining.  Our body cannot make these nutrients, so we must get them through our diet, and supplementing, if we cannot absorb well.  Restoring sufficient vitamins and minerals helps the body heal and function properly.  There are four fat soluble vitamins (A, D, E, and K).  Most CeD people have low Vitamin D, but the others can be low as well just not routinely tested.  Vitamin D helps regulate the immune system and lowers inflammation.  Vitamin A is needed for skin and eye health.  There are nine water soluble vitamins, Vitamin C, and the eight essential B vitamins.  

Gluten free facsimile foods are poor sources of these nutrients.  They also contain food ingredients and additives that have been shown to promote inflammation.  

I lowered my inflammation by supplementing to correct nutritional deficiencies, and by following a healthy diet.

I followed the Autoimmune Protocol Diet developed by a doctor with Celiac Disease for herself and her Celiac family.  Dr. Sarah Ballantyne's book The Paleo Approach has been an extremely helpful tool.  An easy to read book with pictures and graphics for explaining how and why the autoimmune response occurs, how to calm mast cells which lowers histamine which lowers inflammation which improves health and remission of symptoms.

I think the son's first job should be taking care of himself to get his inflammation resolved.

 

References:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

https://pubmed.ncbi.nlm.nih.gov/33268003/

[Scott Adams]

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[Paula McVicker]

Could he do remote work from home? It may help alleviate all the stress this undoubtedly is having on him & your family. If not now, then possibly look into a future career for him whereby he can remotely work. It's an option more readily available nowadays.