Celiac Disease/Gluten Sensitivity?

[mshanson3121]

Do any here have children with this? When did they start showing symptoms, and which which ones? Can they start suddenly? If they have celiac, did you do the blood test and did it show positive? If so, what age? (I've heard the chance of false negatives is high early on).

 

[sailorstitch]

My best friend has this. I read up on it a little bit. If I remember correctly symptoms usually start in the mid to late 20s. My friend was diagnosed when she was about 33 or 34.

 

[alexandmaddie]

Two of my three kids have Celiac Disease. My son was diagnosed first, he didn’t have any symptoms that we were aware of (although there are over 300 symptoms). He has T1D, which often goes hand in hand with Celiac Disease so his endocrinologist does a blood test for it each year. His levels from the blood test were extremely high, so he then had an endoscopy, during which they took samples that were then tested. We got the call a few days later that he was positive for Celiac.

The gastroenterologist recommended that everyone in the family get tested, which is how we discovered my daughter has Celiac as well.

My son was 14 and my daughter was 16 at diagnosis.

 

[crazylady]

I can't speak to the testing but I know it was more than blood work for my family. Oldest nephew was diagnosed "failure to thrive" in maybe 6th grade so they did more testing to figure out why and diagnosed celiac. Younger siblings and SIL subsequently diagnosed. Retrospectively they all had differing symptoms but never put them together until after diagnosis.

 

[mshanson3121]

I can't speak to the testing but I know it was more than blood work for my family. Oldest nephew was diagnosed "failure to thrive" in maybe 6th grade so they did more testing to figure out why and diagnosed celiac. Younger siblings and SIL subsequently diagnosed. Retrospectively they all had differing symptoms but never put them together until after diagnosis.

What sort of symptoms?

 

[mjkacmom]

My daughter had chronic diarrhea, and it runs in our family. She had a positive blood test, and a positive endoscopy, she was 7. None of my other kids tested positive on the blood test.

 

[BadPinkTink]

please read up and do some research. My mum and grandmother have Celiac Disease. It is very different to just a food intolerance. My mum was very ill as a child and even now associates foods such as pasta and spaghetti will illness and will not eat gluten free pasta. As far as I know, the only genuine test for Celiac Disease is a biopsy of the small intestine. A blood test does not make sense to me, as Celiac Disease affects the small intestine and not blood. Both my mum and grandmother were diagnosed by having the biopsy.

True Celiac Disease is a type of auto immune disease where the body has an inability to process gluten. Gluten is present in wheat, oats, barely and rye so the person eliminates all forms of these grains from their diet.

Source https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220
Eating gluten triggers an immune response in the small intestine. Over time, this reaction damages the small intestine's lining and prevents absorption of some nutrients (malabsorption). The intestinal damage often causes diarrhea, fatigue, weight loss, bloating and anemia, and can lead to serious complications.

In children, malabsorption can affect growth and development, in addition to the symptoms seen in adults.

 

[fireworks fan]

I have celiac and was diagnosed as an adult. The blood test was negative for me, so I don’t recommend relying on that. I had all kinds of digestive symptoms and lost a lot of weight, also ended up with osteoporosis because I wasn’t absorbing nutrients properly. You can be diagnosed at any age.

 

[mjkacmom]

please read up and do some research. My mum and grandmother have Celiac Disease. It is very different to just a food intolerance. My mum was very ill as a child and even now associates foods such as pasta and spaghetti will illness and will not eat gluten free pasta. As far as I know, the only genuine test for Celiac Disease is a biopsy of the small intestine. A blood test does not make sense to me, as Celiac Disease affects the small intestine and not blood. Both my mum and grandmother were diagnosed by having the biopsy.

True Celiac Disease is a type of auto immune disease where the body has an inability to process gluten. Gluten is present in wheat, oats, barely and rye so the person eliminates all forms of these grains from their diet.

Source https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220
Eating gluten triggers an immune response in the small intestine. Over time, this reaction damages the small intestine's lining and prevents absorption of some nutrients (malabsorption). The intestinal damage often causes diarrhea, fatigue, weight loss, bloating and anemia, and can lead to serious complications.

In children, malabsorption can affect growth and development, in addition to the symptoms seen in adults.

Oats are okay.

 

[BadPinkTink]

Oats are okay.

actually not accurate. Oats contain avenin , which is a protein similar to gluten. Many celiacs have problems with oats, and gluten free oats, and therefore they are on the list of foods to avoid. However each person has different sensitity, so you may CHOOSE to have them in your diet while another celiac person may avoid them. https://www.coeliac.org.uk/gluten-free-diet-and-lifestyle/gf-diet/oats/

As gluten free diets have become trendy in the last few years, many many people " think " they have celiac disease when they may only be wheat intolerant. it is very important to understand the difference and to not just jump on the bandwagon and call yourself a celiac when you have not had the biopsy or endoscopy.

There are huge misconceptions about gluten free diets and celiac disease. Just because you may feel better following a gluten free diet does not mean that you are celiac.

 

[mjkacmom]

actually not accurate. Oats contain avenin , which is a protein similar to gluten. Many celiacs have problems with oats, and gluten free oats, and therefore they are on the list of foods to avoid. However each person has different sensitity, so you may CHOOSE to have them in your diet while another celiac person may avoid them. https://www.coeliac.org.uk/gluten-free-diet-and-lifestyle/gf-diet/oats/

As gluten free diets have become trendy in the last few years, many many people " think " they have celiac disease when they may only be wheat intolerant. it is very important to understand the difference and to not just jump on the bandwagon and call yourself a celiac when you have not had the biopsy or endoscopy.

There are huge misconceptions about gluten free diets and celiac disease. Just because you may feel better following a gluten free diet does not mean that you are celiac.

Only a few react to avenin, my dd has never had a reaction to oats.

 

[BadPinkTink]

Only a few react to avenin, my dd has never had a reaction to oats.

and thats great for her, BUT others do, so to say oats are ok, is just not accurate. With such a serious disease as celiac disease, broad statements such as oats are ok should not be made, without clarification and a warning that some people are sensitive. Also oats are very easily contaminated by other grains, which again people need to be made aware of. A person may not be sensitive to oats BUT have a reaction to a food which has oats, as during the production the oats have come into contact with other grains.

Both my mum and grandmother were diagnosed by biopsy in the 1970's, before I was born. I have spent all my life (over 40 years) being aware of celiac disease and what it is and what grains should be eliminated from the diet. My grandmother had separate butter for her toast, my mum cant drink beer. Back in the 1980's my mum had to get gluten free flour on prescription from the doctor to make her own bread as no grocery store sold the flour and there were no commercially made bread in the shops. Gluten free cookies and cakes could only be bought in a drugstore, not a grocery store and there was no such thing as gluten free pasta, pizza or the huge range of gluten free foods now available in grocery stores. I grew up knowing to read every single ingredient list on every food product, from candy and chocolate to ketchup, mayonnaise, and everything in between.

 

[barkley]

and thats great for her, BUT others do, so to say oats are ok, is just not accurate. With such a serious disease as celiac disease, broad statements such as oats are ok should not be made, without clarification and a warning that some people are sensitive. Also oats are very easily contaminated by other grains, which again people need to be made aware of. A person may not be sensitive to oats BUT have a reaction to a food which has oats, as during the production the oats have come into contact with other grains.

Both my mum and grandmother were diagnosed by biopsy in the 1970's, before I was born. I have spent all my life (over 40 years) being aware of celiac disease and what it is and what grains should be eliminated from the diet. My grandmother had separate butter for her toast, my mum cant drink beer. Back in the 1980's my mum had to get gluten free flour on prescription from the doctor to make her own bread as no grocery store sold the flour and there were no commercially made bread in the shops. Gluten free cookies and cakes could only be bought in a drugstore, not a grocery store and there was no such thing as gluten free pasta, pizza or the huge range of gluten free foods now available in grocery stores. I grew up knowing to read every single ingredient list on every food product, from candy and chocolate to ketchup, mayonnaise, and everything in between.

thank you for sharing your knowledge and experiences. i agree that it is a serious disease and needs to be properly diagnosed. i've known far too many people to either armchair diagnose or align themselves/their children with doctors who don't do the appropriate testing to verify their diagnosis. sweeping lifestyle changes are made but the true underlying conditions/diseases are left ignored/untreated-in some cases to disastrous consequences.

 

[Dancind]

Daughter and I are intolerant, and neither of us has a diagnosis. She is more sensitive than me, gets stomach cramps, migraines, brain fog, skin breakouts. I have stomach pain, and then joint pain. Tests would not have been definitive for us, but we know to avoid gluten. We both can tolerate fermented soy sauce, so yay we can have Asian food. I can eat one ancient grain flour called Sonora White, and gluten free oats. She has mild problems with those.

If not celiac, it is trial and error. One odd thing, her skin was always the whitest of white, like she glowed in group photos. Now, she's fair, but there's some pinky tones. I have no idea why, but I have read it is related.

 

[luvbwv]

My son in law was diagnosed at age 9, it was diagnosed because he stopped growing. He is a type 1 diabetic and that ofthern goes hand in hand with Celiac disease. His younger brother also has it and is a type 1 diabetic as well.

 

[crazylady]

What sort of symptoms?

Migraines for my niece who would have been a 5th grader, digestive issues for my younger nephew. I'm not sure about SIL, just a bunch of stuff she had been attributing to getting older.

 

[desamnik]

Celiac is very difficult to diagnose. One of DD's good friends was diagnosed about a year ago, after being very sick for many, many months, headaches, vomiting, anxiety, the symptoms are so varied. Gluten causes an "immune reaction" in other autoimmune diseases also. Celiac by definition destroys the small intestine, so it is imperative to eliminate gluten completely from your diet, even if you are symptom free.

 

[BadPinkTink]

Celiac by definition destroys the small intestine, so it is imperative to eliminate gluten completely from your diet, even if you are symptom free.

and this is what the armchair and internet quacks dont understand. An auto immune disease which destroys the small intestine is very different to I ate a bowl of pasta, I feel bloated, my friend said I should try this new gluten free diet and I feel amazing now

 

[mshanson3121]

A blood test does not make sense to me, as Celiac Disease affects the small intestine and not blood.

It has to do with certain antibodies that get produced I believe.

 

[mshanson3121]

Daughter and I are intolerant, and neither of us has a diagnosis. She is more sensitive than me, gets stomach cramps, migraines, brain fog, skin breakouts. I have stomach pain, and then joint pain. Tests would not have been definitive for us, but we know to avoid gluten. We both can tolerate fermented soy sauce, so yay we can have Asian food. I can eat one ancient grain flour called Sonora White, and gluten free oats. She has mild problems with those.

If not celiac, it is trial and error. One odd thing, her skin was always the whitest of white, like she glowed in group photos. Now, she's fair, but there's some pinky tones. I have no idea why, but I have read it is related.

My daughter has this skin. Literally, she is so pale you can see the blood vessels.

They have suspected our daughter of having it for years. They've done the blood screen twice (I think at 3 & 5, or 4 & 6, I forget exactly) but it was negative both times. However she has several symptoms: severe chronic constipation, slow growth, horrible dental enamel, poor appetite, anxiety (however she also has ASD) and probably more I'm not thinking of as she has many fluky things. Autoimmune issues run in the family and she has certain markers such as Raynaud's Syndrome and Livedo Reticularis. Anyways, about a week ago, she has started breaking out in a rash every night after supper. We have no idea what it is. She gets itchy, and it slowly fades on it's own (or Benadryl helps). It's been suggested it could be any number of things of course, but one has suggested liver issues (her bowel medication can be hard on the liver), obviously food allergies as a possibility, or an auto immune issue.