Bunch of questions about celiac disease

[Pam P]

I stumbled upon this site.  It’s very helpful so far. I jus have a few questions I would like to clarify. 

We are waiting for the biopsy results. How long does that typically take?  We are in Canada.

My son, 19 might have it. He loved to eat food and now he hates all foods.  Can you still keep loosing weight on gluten free way of eating? 

He always falling asleep.  Is that common? 

Did anyone else get a dietician to help with understanding celiac disease? 

Has anyone done a gastric emptying? What happens with that test? 

When do you start getting relief?

does anyone especially have a rash on their scalp? 

Thanks everyone,

Concerned Mum!

 

 

[NNowak]

In my experience the biopsy confirms what the doc has seen when he does the EDT. 24 years ago my doc told me I had flattening of the vilii before I left the hospital on the day of the test. It really shouldn’t take long, but perhaps processes are different in Canada. The healing process is different for everyone. Someone who has had significant decline in their physical health prior to diagnosis may take a few years to become healthy. Others may find relief from their symptoms within a few months. If you don’t know exactly why a test has been ordered, or the process entailed, you need to clarify with the doctor. You do have a choice in what you put yourself through. Don’t be a sheep. The scalp and other skin areas may be affected by the autoimmune response in a celiac.  A nutritionist is highly recommended as you navigate the first few months of this process. Also, the patient HAS to be his best advocate, so stay up on the research in order to be aware of new issues. One has to be able to converse intelligently with their healthcare provider. Don’t be afraid to call the office and ask questions, get test results or switch providers if you aren’t satisfied with competent care. 
 

Best of luck!

[Pam P]

Thanks kindly for your prompt reply.

I am hoping we can support our son during this change in his life.  What makes it super difficult for us is, Ryan has a learning disability and is high functioning.  This is challenging for the average person.  I can’t imagine how this impacts someone with prior deficits. 

We also had to go dairy free. Once upon a time he loved milk. I know it’s early days for us but we are so worried about the continual weight loss. He was 194 July 2019.  He is now 152 Oct 2019.  One day at a time .....he is pretty resilient and we hope that shines through in the end. 

Thanks again 

Concerned Mum!

[cyclinglady]

The good news is that he may get dairy back.  I did!  But it can only occur if there is villi healing and you are lucky enough not to be genetically lactose intolerant (like a huge chunk of the world’s population).  (A true milk protein allergy is different.)

I would opt for a celiac-savvy dietician who can work with you both.  

Once healing occurs, his appetite should improve and he should gain weight.  He should also experience less fatigue. If he has celiac disease he is most likely malnourished.  If diagnosed, stick with real food and avoid processed junk food, even gluten free junk food.  In my non-medical opinion, this might help expedite healing.  Believe me, I indulge in some gluten-free junk food, but I feel better eating a cleaner diet.  I also would advise not eating out until he sees improvement.  

Celiacs can have many types of rashes.  The worst is probably DH or Dermatitis Herpetiformis.  This horribly itchy rash is actually celiac disease.  Antibodies are deposited in the skin.  If so, a stricter diet is needed based on forum member input. All rashes should resolve if they are due to celiac disease.  

Gastroparesis can also be a symptom of celiac disease.  This should resolve with healing.  

Canada has a great celiac disease association.  Check out their website to connect or learn about the diet and cross contamination.  

Edited October 29, 2019 by cyclinglady

[GFinDC]

Fatigue is a common symptom for untreated celiacs.  Celiac destroys the villi lining of the small intestine.  Those villi are what absorb nutrients from the food we eat.  So the body is malnourished while eating plenty of food.

He may have some vitamin and mineral deficiencies.  The doctor can test for those.  Simple foods made at home are the best choice.  Not a lot of spicy foods either.  His gut is damaged and irritated and needs easy to digest foods for awhile.  Staying away from carby/sugary foods is a good idea.  When the gut is damaged those kind of foods can feed bad bacteria and create lots of gas and bloating and discomfort or pain.

Insomnia can occur along with the fatigue.  Seems like it wouldn't but it does.  He may do better with some multi-vitamin pills at first. 

[Pam P]

Thanks everyone for the responses, very helpful. 

Can someone suggest what might be simple foods? 

Again it’s early days but we can tell he flares up ( that’s how I describe it) when he eats something perhaps has gluten in it.  

Thanks again.

Concerned Mum!

[cyclinglady]

Simple foods?  Think one to five ingredients.  Like any fresh fruit or veggies.  Meats, fish, poultry, and eggs.  Nuts or seeds.  Use processed foods like mayonnaise  but read the labels.  The fewer the ingredients, the less chance you will make a mistake until you master the diet (all those forms of gluten).

Like tonight I am baking chicken, mashed potatoes and green beans (those are all things that do not come in a box).     We usually have a small salad to start.  I use olive oil, mustard and wine vinegar (mixed) as my dressing, but Hidden Valley Ranch is gluten free and hubby likes that.  Lunch is going to be lettuce-wrapped burgers.  Breakfast some eggs and bacon.  

Last night I made meatloaf, but I use pre-cooked rice instead bread crumbs.  We had butternut squash and cauliflower.  

My non-celiac kid (18)  just read off a bag of Doritos chips last week and the ingredient list was huge.  Stuff she could not even pronounce.  She decided that plain potato or corn chips (potato or corn, oil, and salt) was probably a better or healthier option.  

I think it is easier in the beginning to buy foods that actually have “gluten free” or a gluten-free logo on the package.  It is less stressful.  

You will find your way.  It might be better for your house to go gluten free.  Any non-celiacs can eat gluten outside of the house.  It might help if your son does not have tempting gluten foods around.    Gluten is not needed for anyone to feel healthy.  So do not worry about the non-celiacs.  

Again, this will soon become second nature to you.  Give your self time, expect mistakes to be made and setbacks, but that happens to all of us.  

Edited October 30, 2019 by cyclinglady

[Peter-R]

Hi Pam,

I am 21 and have been diagnosed for practically my whole life, and here is some feedback on the questions I may be able to provide some insight on.

It is quite possible for people to still lose weight on a gluten-free diet especially if they are still switching over or have switched over for a short period. It is a common issue with celiac disease i find.

My DR recommended a dietitian as I was young and back then Celiac was relatively new back then. However it was very useful to see a dietitian to help understand how to get the proper nutrients out of foods and to find ways to get healthier foods into me (i am a picky eater). They are generally pretty good at giving lots of tips and tricks to understand the safe way to eat gluten-free.

In regards to the rash, that could simply just be a symptom of celiac, dermatitis herpetiformis (DH) . It is a possibility, but the doctor might be able to provide some more insight on it.

There are lots of amazing groups out there to support Celiac in Canada.

 

If you have any questions please don't hesitate to ask.

[Wheatwacked]

If it does not come in a box it is likely gluten free. The Gluten in todays' commercial wheat, Red Dwarf variants (80% of the world market), is very addictive. There are 200 other symptoms connected to eating gluten in addition to the malnutrition caused by villi atrophy. Cream of Rice is soothing to the tummy and one serving has 70% of the minimum daily iron. Fill up on salad, fruit and vegetables (virtually unlimited); meats and carbs are the treats. Check out Dr. Fuhrman's Six Week Plan from his book, Eat to Live. It is working well for me and has cut my food costs in half.

On 10/29/2019 at 6:43 PM, cyclinglady said:

The good news is that he may get dairy back.  I did!  But it can only occur if there is villi healing and you are lucky enough not to be genetically lactose intolerant

I found that homemade fermented pickles (not vinegar pickles) restored the lactobacillus in my gut and ended my dairy issues. Milk is one of the best sources of iodine.

On 10/29/2019 at 3:46 PM, Pam P said:

Can you still keep loosing weight on gluten free way of eating? 

People who eat wheat typically eat 500 calories a day more than those who don't. The presence of Gluten turns on the fat storage genes, so you get what I call the Biafra Baby Belly.  I suspect to counteract malabsorption. Once gluten free and on a diet with all the essential vitamins and minerals the body will gravitate to its appropriate weight. I went from 185 lbs down to 155 lbs and am now stable at 170. (6 foot 2 inches).

On 10/29/2019 at 3:46 PM, Pam P said:

He loved to eat food and now he hates all foods.

I've spent years trying to understand this in myself. Especially if focused on a project, I would prefer to continue working hungry because after I ate I did not have the same energy. I savored the gnaw in my stomach. My first response to hunger is to smoke a cigarette and have a cup of coffee, both appetite suppressants. I believe it is because before the gluten free diet any time I ate it was a crapshoot as to whether I would feel better or worse after eating, so I put it off as long as I could. Of course I only identified this life long behavior self-modification recently, even though I've been smoking since 1963, and am now working on eating instead of smoking. It's hard to change though; cigarettes are my oldest close friends.

Quote

Merck Manual
for the Professional

Celiac disease is an immunologically mediated disease in genetically susceptible people caused by intolerance to gluten, resulting in mucosal inflammation and villous atrophy, which causes malabsorption. Symptoms usually include diarrhea and abdominal discomfort. Diagnosis is by small-bowel biopsies showing characteristic though not specific pathologic changes of villous atrophy that resolve with a strict gluten-free diet.

Instruct the patient to follow a gluten-free diet and replace any vitamin or mineral deficiencies.

Patients who have other diseases, such as lymphocytic colitis, Down syndrome, type 1 diabetes mellitus, and autoimmune (Hashimoto) thyroiditis, are at risk of developing celiac disease.

I am not a medical professional nor scientist.