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Forums » Smalltalk » AMA: Living with severe Celiac Disease

Looks fun and the topics so far has helped me decide on one.

For those unfamiliar with Celiac, it's an auto-immune disease that, in a sense, makes most grains and their derivatives a poison to the individual. The GI tract is affected the worst which influences overall digestion. Imagine never being able to eat bread, cakes, cookies, pasta, ect. I know what they are like because I wasn't diagnosed until later in my life but the journey to better health has been...interesting and continues to this day.

Be it about the disease or whatever, ask away. I've learned a lot over the years.
Kim Site Admin

How long did it take you to discover you had Celiac after the onset of symptoms? Was it scary before you were diagnosed?
Do you find that people have a hard time understanding the difference between living gluten-free by choice, living with a gluten sensitivity, and living with Celiac Disease?
Auberon Moderator

I'm in the process of being diagnosed with Celiac (had the endoscopy, now pending results of the blood test), and I'd be curious to know what brands of gluten free food you've found to be the best. I'm bracing for the dietary changes, and that's one of my biggest concerns.
LunarValravn Topic Starter

Kim wrote:
How long did it take you to discover you had Celiac after the onset of symptoms? Was it scary before you were diagnosed?

Symptoms showed when I was a baby. Mother couldn't feed me anything( formulas have wheat and corn in them) without me screaming my head off. I wasn't diagnosed until I was 21.

At first I wasn't scared. Agonizing pain and gel-like blood I thought was normal for humans. Docs said they were growing pains and it was all in my head after all. It's just life. As the years went by I was scared. The pain became so bad I felt like I was dying and every meal was agony if I kept it down. Still afraid to eat in all honesty.
LunarValravn Topic Starter

LittleLilac wrote:
Do you find that people have a hard time understanding the difference between living gluten-free by choice, living with a gluten sensitivity, and living with Celiac Disease?

Yes, actually. Most believe I'm lying as an excuse to eat gluten free. Those who understand the need instead of choice to live on a gluten-free diet are either a Celiac themselves or know someone who is.
LunarValravn Topic Starter

Auberon wrote:
I'm in the process of being diagnosed with Celiac (had the endoscopy, now pending results of the blood test), and I'd be curious to know what brands of gluten free food you've found to be the best. I'm bracing for the dietary changes, and that's one of my biggest concerns.

I hope all goes well with the tests and understand the challenge of the dietary changes. First tip is read everything. Just because it says gluten free doesn't mean it is. I've found gluten-free foods with barley in the ingredients. So really...ingredients are more important than the brands.


Here's some brands I've found to be good.
  • Kinnikinick - Awesome cookies and Oreo replacements. A little dry but good for dunking.
  • Annie's - good Mac and cheese but they make non gluten-free versions too. Be careful
  • Glutino - I only eat their wafers. Nice kitkat replacement
  • Tinkyada - Good noodles with a taste and texture similar to wheat noodles.
  • Birch Benders - paleo pancake mixes. Good if you don't have an allergy to tree nuts
  • Schar - not safe for me but give it a try. They offer breads, treats, and more
  • Haagen Daz - Basic flavors. This ice cream is not made with corn but read everything as some flavors include wheat.
  • Most Hersheys brands including Reeses


Some brands you don't have to give up but they can be risky.
  • Chex
  • Cheerios
  • Capt Crunch
  • Hormel - read
  • and many others.

I hope this helps. More or less brands will be safe depending on how sensitive you are. Always look for warnings about if food is processed on shared equipment. It may be safe but it could bite you in the rear too.
sarah18394729

So I know a few people in my life who have been diagnosed recently who even after being diagnosed never knew anything was wrong and so when I saw this I wanted to know a few things so I wanted someone who has been living with it for a while a few questions since most likely you know more. so here they are.

What complications are associated with celiac disease?
What conditions are associated with celiac disease?
Should other members of a family be tested for celiac disease?
Can celiac disease be prevented?
Is celiac disease life-threatening?
Does gluten make you fat?
Will they lose weight on the gluten-free diet?
Are people with celiac disease always skinny?
Will glutenase and other “gluten-cutter” products help those with celiac disease digest gluten?
Do people have to use special gluten-free soaps, shampoos, and lotions if they have celiac disease? Can gluten be absorbed through the skin?
How do doctors diagnose Celiac?
How do you treat Celiac once diagnosed?
Why is Celiac so hard to diagnose?
For starters, what is celiac disease?
Is Gluten intolerance the same as Celiac?
LunarValravn Topic Starter

sarah18394729 wrote:
So I know a few people in my life who have been diagnosed recently who even after being diagnosed never knew anything was wrong and so when I saw this I wanted to know a few things so I wanted someone who has been living with it for a while a few questions since most likely you know more. so here they are.

What complications are associated with celiac disease?
What conditions are associated with celiac disease?
Should other members of a family be tested for celiac disease?
Can celiac disease be prevented?
Is celiac disease life-threatening?
Does gluten make you fat?
Will they lose weight on the gluten-free diet?
Are people with celiac disease always skinny?
Will glutenase and other “gluten-cutter” products help those with celiac disease digest gluten?
Do people have to use special gluten-free soaps, shampoos, and lotions if they have celiac disease? Can gluten be absorbed through the skin?
How do doctors diagnose Celiac?
How do you treat Celiac once diagnosed?
Why is Celiac so hard to diagnose?
For starters, what is celiac disease?
Is Gluten intolerance the same as Celiac?

Quite a few questions indeed. I'll do my best to answer them but I'm no doctor.

What complications are associated with celiac disease?

Malnutrition
Lethargy
Bone loss
Irritability and depression
Lactose intolerance ( I don't wrestle with this. Goat milk should be a safe option if plant based milks are nasty)
Lymphoma and bowel cancer
Dental defects
And possibly a few others

What conditions are associated with celiac disease?
Irritable Bowel Syndrome(IBS)
Crohn's Disease
Diabetes
Other auto-immune diseases
And more. Check this out for more info.
https://celiac.org/about-celiac-disease/related-conditions/


Should other members of a family be tested for celiac disease?
Yes. Not every family member will have it but it is a genetically passed disease.

Can celiac disease be prevented?
No but one can prevent symptoms by eating a gluten-free diet

Is celiac disease life-threatening?
It can be if left untreated or if one refuses to adopt the gluten-free diet. Many Celiacs do live shorter lives than the average person though.

Does gluten make you fat?
Gluten itself can't but complications and reactions caused by it might. Anyone without gluten sensitivities should be fine.

Will they lose weight on the gluten-free diet?
Depends on the person. Personally, I've lost some weight getting on a gluten-free diet but not everyone will

Are people with celiac disease always skinny?
No. Most are skinny but some actually store fat easier because our "starving" bodies are trying to store energy

Will glutenase and other “gluten-cutter” products help those with celiac disease digest gluten?
Another that depends on the person. I have heard a few who say it does however, many others including myself, have found such products useless

Do people have to use special gluten-free soaps, shampoos, and lotions if they have celiac disease?
Not really but one should watch the ingredients. Oats, barely, rye, wheat(often listed as triticum), and their derivatives ( xantham gum for one) are put into many cosmetics. These can, depending on one's sensitivity, cause problems

Can gluten be absorbed through the skin?
Many would say no but I don't believe it to be true. I'm a worst case scenario but I've lost many jobs due to falling ill from touching contaminated surfaces. At first I deal with rashes and skin lesions but if my skin is exposed to gluten long enough I'll experience agonizing pain and eventually heave my guts out.

How do doctors diagnose Celiac?
Blood tests and endoscopes are the most common methods. I've heard of some using a standard allergy test. There's been talk of genetic testing for Celiac Disease but I don't know if they are really doing that.

How do you treat Celiac once diagnosed?
The only treatment is to eat a strict gluten-free diet. I've heard of auto-immune suppressants but that can greatly reduce or remove your ability to fight off infections and other diseases.

Why is Celiac so hard to diagnose?
For one, the symptoms vary from person to person, making it more like a spectrum. Many of the symptoms are often mistaken as other diseases too like IBS, acid reflux, ect. resulting in misdiagnoses.

The grains which trigger celiac attacks, as I call them, are deemed super foods. It doesn't help put a spotlight on the disease when everyone believes they can't cause health problems.

For starters, what is celiac disease?
Celiac is an auto-immune disease. Anti-bodies react to the presence of gluten, attacking the body in an attempt to remove it. Most damage is done to the digestion tract

Is Gluten intolerance the same as Celiac?
No. They're very similar but Celiacs receive intestinal damage unlike someone who's intolerant.

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