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A Newbie With Lots Of Questions!

Alexa

By Alexa
in Coping with Celiac Disease

Recommended Posts

Alexa Newbie
Alexa
Posted

Hi everyone! For the last 2 years my 10 year old daughter has been complaining about feeling dizzy, nauseas, with constant pain in her wrists, mouth ulcers, constipation, stool with mucosity, among other things. None of the doctors we visited had answers for us and that was very frustrating. I took her to the US (I live in the Caribbean) to have an urology condition checked (hematurya) and that was when my sister who lives there told me about her gluten sensitivity condition so I decided to run the gene test from Enterlolab. My daughter's results were HLA-DQB1*0201 and HLA-DQB1*0202, (Subtype 2,2). Having those results I immediatly started her on a gluten free diet without the direction of a doctor, I decided to just start it by myself. The results have been amazing, she has stopped complaning and she feels a lot better. My questions are: 1. Is it possible to know which parent gave her which gene or do we both have to get the test done? 2. Are my other 2 kids also under this condition even if they don't have any symptoms at all? 3. Do I have to make her go through an intestinal biopsy or that is not necessary at her age? I have so many questions but let's start with these so I don't scare you all :unsure:

Thanks for your time :)

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eatmeat4good Enthusiast
eatmeat4good
Posted

Hi Alexa!

Welcome!

So happy she is feeling better!

It's wonderful you listened to your friend and tried it out!

I'm not one to encourage testing if you already know gluten is a problem for you.

However, some people really, really, want an official diagnosis.

My experience was like yours in trying to find answers. Dr.'s were not helpful at all.

So when I found out about gluten I just went gluten free.

She doesn't need the biopsy if you are willing to help her stay gluten free and learn how to live that way.

You can either take the other kids gluten free too and assume they have the same gluten intolerance, or try to get them tested while they are still eating gluten.

The problem is that if they are Celiac, they can be doing damage even though they don't show symptoms yet.

The decision is yours and you will see a lot of various opinions about testing. If you have taken her off of gluten and decide to get the biopsy, she would have to go back to eating gluten for several weeks and she still may test negative since she has been gluten free for a while.

I struggled with this decision for my son too. But couldn't get a Dr. to agree to test him, so he decided to stay gluten free because he feels absolutely better just like your daughter.

I don't think you can know which parent gave her the gene without both of you getting tested. Or you could get tested and see if you are the same.

To know for sure the other kids would have to be tested, but you could also assume they run the risk and take everyone gluten free.

No one can really know who will and who will not develop Celiac even with the genetic testing.

There have been people who tested their kids once a year and let them eat gluten until they test postive.

Other people just decide that is too risky and take the whole family gluten free.

Good luck with your decision, I hope this helps a little.

Nothing is going to scare anyone here off!

We have all struggled with symptoms and illness and some of us have kids with Celiac/Gluten Intolerance and have had to make the decisions you are making. It's not easy. But keep asking questions and thinking about what is best for you and your family. We don't scare easily around here. ;)

GFinDC Veteran
GFinDC
Posted

Welcome Alexa!

The gene testing can't tell you if you have celiac. It can tell you that you have some genes that are related to autoimmune diseases, but not that you will develop celiac. Many people have the genes for celaic but don't have celiac.

If your daughter is already gluten-free then it is too late to test her without a gluten challenge for up to 3 months. But if she feels better there is no need to do the endoscopy and all that. There is no treatment for celiac disease except the gluten-free diet. There are also people who have NCGI (non-celiac gluten intolerance who never test positive.

Stuff on celiac and gluten-free eating:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

How bad is cheating?

Dugudugu Rookie
Dugudugu
Posted

Let me know if you happen to live in Curacao. I can help you where to buy your food. It's quite a challenge here.

bartfull Rising Star
bartfull
Posted

Well if your sister is gluten sensitive, odds are it comes from your side of the family. But that doesn't mean her father's side couldn't also have problems. If I were you, I would have the other kids tested and yourself too. AND your husband. Not all celiacs have noticable symptoms, but they are still doing damage every time they eat gluten.

If you don't want to put the kids and yourself through testing, you could always try going gluten-free for a few weeks and see if you are feeling better. Even most "non-symptomatic" celiacs notice a big improvement in how they feel. I'm a good example of that. I thought the lack of energy and brain fog were just signs of getting older. :rolleyes:

Bobbie Jo Rookie
Bobbie Jo
Posted

Hi Alexa!

I'm glad your daughter is better! And GOOD FOR YOU MOM for tracking down some causes. You must love her a lot, and you've saved her from likely YEARS of sickness, poor performance, and even early, painful death.

I also have a 10 year old daughter who is gluten free, as am I and my 12 year old son.

Lots of sage advice on here from people who have been at the diet a lot longer than me, but I will tell you that I wish we had done endoscopy testing to get an official diagnosis. It would be nice to say "we have celiac disease" and know it's official.

Why:

- #1 Reason: We would have an official diagnosis to now sound the alarm and pass this information down to future generations - to say, "YES, we have this DISEASE in our family and you may too". Otherwise relatives just don't seem to take it seriously. And people may say.. "yeah.. grandma jo was allergic to something..."

Since I've had two grandmothers on the fraternal side die, one of stomach and the other of intestinal cancer, and an uncle now very ill with stomach protein problems.. I take this seriously.

-#2 Reason: Other people, like friends, school, waiters, etc, also seem to understand better when you say "disease", thus making life easier instead of saying "we're allergic to wheat". ( This is getting better though since more people being diagnosed these days and info spreading). Not that I care what people think, but if they have anything to do with food around my kids, I want them to take it seriously.. to know that yes, you can't set the sandwhich I packed my kid to eat at your house on the cutting board where you just made your kid a wheat PB&J. Now - most people do care, and try,... but it takes just one self-focused idiot who doesn't care, and ruins my daughter's next two days getting over being glutenated.

So again - great job, and it's so nice to know that something as simple as taking gluten out of your daughter's diet is changing her life. It's worth it, and life will get easier for you as you get used to this diet.

Let me know if you ever need any tips on feeding hungry gluten-free kids on the go! We eat a lot of corn quesadillas with meat, cheese, whatever.. beans.

More info and tips in my profile.

God bless!

(PS - And for those who suggest I just lie and say we have Celiac Diease - I tried that, and first - my kids know I'm lying, because truly we don't know that, we just know gluten makes us sick, and secondly - people then start asking all of these questions, and if they ask about testing I'll have to backtrack and explain all of that! And I'm a terrible liar. And .. I do not feel led to subject us to eat gluten for weeks to then get the endoscopy. Maybe me at some point, but not now.)

Alexa Newbie
Alexa
Posted
  • Author

Hi Alexa!

Welcome!

So happy she is feeling better!

It's wonderful you listened to your friend and tried it out!

I'm not one to encourage testing if you already know gluten is a problem for you.

However, some people really, really, want an official diagnosis.

My experience was like yours in trying to find answers. Dr.'s were not helpful at all.

So when I found out about gluten I just went gluten free.

She doesn't need the biopsy if you are willing to help her stay gluten free and learn how to live that way.

You can either take the other kids gluten free too and assume they have the same gluten intolerance, or try to get them tested while they are still eating gluten.

The problem is that if they are Celiac, they can be doing damage even though they don't show symptoms yet.

The decision is yours and you will see a lot of various opinions about testing. If you have taken her off of gluten and decide to get the biopsy, she would have to go back to eating gluten for several weeks and she still may test negative since she has been gluten free for a while.

I struggled with this decision for my son too. But couldn't get a Dr. to agree to test him, so he decided to stay gluten free because he feels absolutely better just like your daughter.

I don't think you can know which parent gave her the gene without both of you getting tested. Or you could get tested and see if you are the same.

To know for sure the other kids would have to be tested, but you could also assume they run the risk and take everyone gluten free.

No one can really know who will and who will not develop Celiac even with the genetic testing.

There have been people who tested their kids once a year and let them eat gluten until they test postive.

Other people just decide that is too risky and take the whole family gluten free.

Good luck with your decision, I hope this helps a little.

Nothing is going to scare anyone here off!

We have all struggled with symptoms and illness and some of us have kids with Celiac/Gluten Intolerance and have had to make the decisions you are making. It's not easy. But keep asking questions and thinking about what is best for you and your family. We don't scare easily around here. ;)

Thank you eatmeat4good! I will think about it... it is not an easy decision since my boys love bread and pizza so much and in my country we don't have the variety of food as there is in the US. Anyways I'm going to go ahead with the Enterolab genetic testing to see how that goes. Thanks again for your reply :)

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Alexa Newbie
Alexa
Posted
  • Author

Hi Alexa!

I'm glad your daughter is better! And GOOD FOR YOU MOM for tracking down some causes. You must love her a lot, and you've saved her from likely YEARS of sickness, poor performance, and even early, painful death.

I also have a 10 year old daughter who is gluten free, as am I and my 12 year old son.

Lots of sage advice on here from people who have been at the diet a lot longer than me, but I will tell you that I wish we had done endoscopy testing to get an official diagnosis. It would be nice to say "we have celiac disease" and know it's official.

Why:

- #1 Reason: We would have an official diagnosis to now sound the alarm and pass this information down to future generations - to say, "YES, we have this DISEASE in our family and you may too". Otherwise relatives just don't seem to take it seriously. And people may say.. "yeah.. grandma jo was allergic to something..."

Since I've had two grandmothers on the fraternal side die, one of stomach and the other of intestinal cancer, and an uncle now very ill with stomach protein problems.. I take this seriously.

-#2 Reason: Other people, like friends, school, waiters, etc, also seem to understand better when you say "disease", thus making life easier instead of saying "we're allergic to wheat". ( This is getting better though since more people being diagnosed these days and info spreading). Not that I care what people think, but if they have anything to do with food around my kids, I want them to take it seriously.. to know that yes, you can't set the sandwhich I packed my kid to eat at your house on the cutting board where you just made your kid a wheat PB&J. Now - most people do care, and try,... but it takes just one self-focused idiot who doesn't care, and ruins my daughter's next two days getting over being glutenated.

So again - great job, and it's so nice to know that something as simple as taking gluten out of your daughter's diet is changing her life. It's worth it, and life will get easier for you as you get used to this diet.

Let me know if you ever need any tips on feeding hungry gluten-free kids on the go! We eat a lot of corn quesadillas with meat, cheese, whatever.. beans.

More info and tips in my profile.

God bless!

(PS - And for those who suggest I just lie and say we have Celiac Diease - I tried that, and first - my kids know I'm lying, because truly we don't know that, we just know gluten makes us sick, and secondly - people then start asking all of these questions, and if they ask about testing I'll have to backtrack and explain all of that! And I'm a terrible liar. And .. I do not feel led to subject us to eat gluten for weeks to then get the endoscopy. Maybe me at some point, but not now.)

Thanks Bobby Jo! but I think I just did what any concious mom would do: look for answers until finding a reasonable one.

I think you are absolutly right about the difference it would make if we had the official diagnosis, but I also think it is an invasive procedure that includes some risks... Anyways, if I did the procedure and the results turned out to be negative I would still stick to this diet since it has made a difference in my daughters life... she was so sick all the time, and none of her symptoms made any sense. Like the dizziness for example, her eyes are fine, so are her ears and her head... what was making her feel so dizzy????? I was feeling sort of desperate! No one knew! And also her wrists, she had pain on her wrists ALL THE TIME! now she's not complaining at all. And her height, she is way too short :) that's cute on her though but her dad is 6' tall and I'm around 5'5" , nothing made sense. So I think an angel can come from above and tell me she is not celiac and I would stick to this diet no matter what. Her pediatrician says I'm a littlebit crazy and stuburn because my daughter was "perfectly fine" "there's nothing wrong with her" but NOW I can say that, NOW THAT SHE'S GLUTEN FREE :)

Thanks again for your kind response, I can tell you are a great mom!!!

Alexa Newbie
Alexa
Posted
  • Author

Welcome Alexa!

The gene testing can't tell you if you have celiac. It can tell you that you have some genes that are related to autoimmune diseases, but not that you will develop celiac. Many people have the genes for celaic but don't have celiac.

If your daughter is already gluten-free then it is too late to test her without a gluten challenge for up to 3 months. But if she feels better there is no need to do the endoscopy and all that. There is no treatment for celiac disease except the gluten-free diet. There are also people who have NCGI (non-celiac gluten intolerance who never test positive.

Stuff on celiac and gluten-free eating:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

How bad is cheating?

Thank you sooo much for all that info. It will be of a lot of help!!!!!

Bobbie Jo Rookie
Bobbie Jo
Posted

So I think an angel can come from above and tell me she is not celiac and I would stick to this diet no matter what. Her pediatrician says I'm a littlebit crazy and stuburn because my daughter was "perfectly fine" "there's nothing wrong with her" but NOW I can say that, NOW THAT SHE'S GLUTEN FREE :)

LOL! My kids' docs thought I was crazy too. Funny thing though - now that they see how well the kids are, they are supporting us. They are human and trained in their ways. But honestly, I think too many moms underestimate their wisdom and instict when it comes to their kids. So - don't cut yourself short. You are abnormal for not taking the doctors strict advice and going out on your own for answers.

By the way - you can make fantastic pizzas with gluten free crusts. And if I don't have crusts on hand or the time to make one, I keep tostadas on hand if the kids have like a pizza party to go to, and I just put cheese and pepperoni on top of those. Not the same as a pizza but better than nothing.

This cookbook saved my sanity in feeding my family: "Recipes for Gluten-Free fun eats from breakfast to treats" Lots of kid tested food that are pretty simple to make.

Have a great day in the Caribbean!

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