Can I Say I Have celiac disease?

[paperbagprincess]

I'm 21 years old and my symptoms started when I was about 15.

I got very sick from Mono/Glandular fever. I developed stomach issues, but they weren't major.

When I was 16 I had some blood tests done and it came back with low b12 and foliate. I ate meat and dairy nearly every day and I ate plenty of fruit and veges. My diet was pretty healthy. I had foliate tablets and b12 injections for over a year, but it made no difference.

When I was 17 and a half, my uncle was dx with celiac disease (blood test then biopsy) and a month later my mum was dx too (blood test then biopsy).

I had the blood test. My result was 17 (0-20 normal). I had the gene test, which I was positive. I was then retested, I don't know the number, my doctor said it was higher than my previous one and wanted me to have the biopsy. My mum had the biopsy with no sedation and said it was horrible. I was moving cities for university so it was going to be a hassle. But mostly I didn't want to do it because I'm a chicken.

So I went gluten free. About 6 months into the gluten free diet I started to feel better. About 1 year into the diet I felt like this was so beneficial I wouldn't go back. And my deficiencies all went normal!

I went to a dietitian who said that she had no doubt I had some damage to the villi. My GP agreed and said I must stay on a gluten-free diet unless I want to have the biopsy done. When I eat gluten, I know about it! It usually takes me about 5 days to recover. I've been gluten free for 4 years

Many people in my family are doctors/nurses/pharmacists. They often bring it up that I don't have Celiac Disease so I don't need to be on a gluten free diet, or that I'm just making myself think I'll feel better so I do, or that if anyone was to remove gluten from their diet they'd become sensitive to it. They make me feel bad and like I'm making this up..

To people who don't know much about Celiac Disease, I just say that I have it (because it's easier), but can I really say I do? And any tips for dealing with the family?

Thanks

[IrishHeart]

Genetic test is positive, a first and second-degree relative with celiac disease, B-12 and folate deficiency (very common in celiac) and good results with dietary compliance? These may be enough for your GP to make a diagnosis if you feel like you need something on "paper". Ask him? Can you get a copy of the test that was "higher than normal"?

What do you care what others think? You are healthy & you know your own body best. A gluten free diet rich in veggies, lean meats, fruits, beans, nuts, fish and healthy fats is about as healthy as it gets--you're not "losing" anything by NOT eating gluten, celiac or not. You probably eat better than these people questioning your wisdom with taking charge of your health!

Just say "think what you want. No matter to me! I feel GREAT!"...and walk away.

As for your family,...hmm, well it IS genetic and if they are not following a gluten-free diet, then they may be headed for trouble themselves. Then, who will find celiac "unbelievable"??

[Takala]

Q. Any tips for dealing with the family ?

A. Yes. Be sure to pack your own lunch and potluck items when interacting with glutenoids.

[domesticactivist]

And when you bring something to the potluck, pull out your servings first (or make a double batch, bring one dish to share and take part of the other for yourself) so that it won't get contaminated.

Our son doesn't have an official diagnosis, but, like you, even the doctors agree he probably has it. We had gone gluten-free before learning that the testing could only be done on gluten. Then the results of him getting even little bits were so extreme that it made no sense to put him back on it. We did a genetic test that did show the possibility. He had just been through surgery and a hospitalization and we didn't want to put him through a bunch of blood draws and a biopsy just in case something might show up even though he'd been gluten-free. So we didn't.

We got a few stern lectures about having to commit to the diet for life and with complete dedication, and we were willing to take that step rather than put the kid back in the hospital! He was on-board, too (10 years old).

We do tell people he has Celiac Disease. We know it is not 100% for sure. We explain the details if someone really cares. Either way, gluten is obviously a huge problem for him, and the results are undeniable on so many fronts to anyone who knew him before or has seen him after he's been glutened.

As for family, we're lucky in that most of them respect our decisions, even if they don't always agree or fully get it. No one is actively trying to undermine us with this.

[paperbagprincess]

Thanks everyone. My Mum had the blood test and biopsy, so in my family's opinion she has it and I don't.

I don't care what they say, but when they do start, they don't stop. It ruins everyone night and I feel guilty.

Thanks all.

[IrishHeart]

Thanks everyone. My Mum had the blood test and biopsy, so in my family's opinion she has it and I don't.

I don't care what they say, but when they do start, they don't stop. It ruins everyone night and I feel guilty.

Thanks all.

Honey, do NOT feel guilty about what others do. It is THEIR behavior that is WRONG, not yours. Stand firm. Stay healthy and eat what keeps you feeling well!

Just say firmly...I appreciate your concern, but the evidence speaks volumes.

What does your Mum say about all this? Perhaps she could speak up on your behalf.

[paperbagprincess]

Honey, do NOT feel guilty about what others do. It is THEIR behavior that is WRONG, not yours. Stand firm. Stay healthy and eat what keeps you feeling well!

Just say firmly...I appreciate your concern, but the evidence speaks volumes.

What does your Mum say about all this? Perhaps she could speak up on your behalf.

Thanks. I do try. I was babysitting my cousins today and my aunt came home. There was a chocolate cake on the bench and she turned and asked 'are you still off gluten?' and I said yes and she said 'oh I guess you can't have any of this delicious cake then'. I didn't reply.. It's like they find any excuse to bring it up and be rude about it.

My Mum is very quiet. She has the same problem with the family but about other things (i.e. how to raise my brother and I) so she doesn't provoke or want to start arguments. In the past she's attempted to but in, but they just shut her down.

Thanks for your advice everything.

[IrishHeart]

Thanks. I do try. I was babysitting my cousins today and my aunt came home. There was a chocolate cake on the bench and she turned and asked 'are you still off gluten?' and I said yes and she said 'oh I guess you can't have any of this delicious cake then'. I didn't reply.. It's like they find any excuse to bring it up and be rude about it.

My Mum is very quiet. She has the same problem with the family but about other things (i.e. how to raise my brother and I) so she doesn't provoke or want to start arguments. In the past she's attempted to but in, but they just shut her down.

Thanks for your advice everything.

Well, kiddo...from what you say, it seems like some members of your family have a cruel streak and they are judgmental and opinionated and that's unfortunate. If your aunt knows full well that you will be sick if you eat that piece of cake, then I find her behavior sadistic. Taunting you like that is just inexcusable. How do you resist telling her where to get off?? You must be very patient and forgiving.

You and your Mum deserve better treatment. I would say it's best to avoid them, but they are your family and it's really not my business to suggest that to you anyway. I personally avoid anyone who brings me grief like that.

You're going to have to find some way to remain unaffected by this kind of treatment.Obviously, it upsets you very much or you wouldn't have posted it. And by the way, we have ALL experienced some measure of this level of disbelief from family/friends but there needs to be some boundaries set to get them to back off or be more accepting. You could just say politely, but firmly "I prefer not to discuss what I eat with any of you anymore. It hurts me when you say these things to me. Please stop."

If they continue, then it would appear that hurting you is their intention.

Just my humble opinion.

I wish you and your Mum well, honey!