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Just Found Out Celiac Is In My Family

camelCase

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camelCase Newbie
camelCase
Posted

I was visiting relatives on my dad's side and I found out I have more than one relative with celiac disease. I've always suspected I had it too since I feel down and depressed all the time, I have dry skin and hives, and I get a stomach ache from eating pasta and bread. My stomach is also feels uncomfortable when people poke it (no I'm not the pilsbury doughboy LOL). I'm not thin but if I stop eating excess sugar for a week I loose weight really fast (like 3-4 pounds a week). Eating sugary food all the time is the only thing that keeps my weight stable.

 

So now I'm wondering how likely it is that I have it. I don't want to burden myself with an elimination diet unless there's at least a 50/50 chance I'm a celiac. I am an engineering student so I don't want to screw around with my body's rythm if it's just an off chance.

 

Please help.

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BlessedMommy Rising Star
BlessedMommy
Posted

It sounds like it could be a possibility for you.

 

Have you asked your doctor about bloodwork to test for it? There's no need to worry about doing an elimination diet unless you've exhausted all testing options and still have inconclusive results.

SMRI Collaborator
SMRI
Posted

I'd go get the bloodwork and possibly the endoscope done before you do any dieting.  Results will be more accurate and the process faster.  Find a GI that specializes in Celiacs though.

user001 Contributor
user001
Posted

Continue to eat the way you normally do till testing is complete, no biggie! Ask the dr to run the blood tests for celiac, and go from there. I am a 30 year old college student at a state university and I managed to cut out gluten last semester and it actually benefited me very much. My brain was so much clearer, my concentration improved and I could study more often and more effectively because after the first couple weeks, I have so much more energy and my headaches and stomach aches resolved. I still have some complications, but overall feeling much better. No worries.

camelCase Newbie
camelCase
Posted
  • Author

Thank you User001 it's nice to hear about your success and it gives me hope for the future.

 

I don't really want to visit a doctor because all the doctors I've spoken to in my area are complete quacks. It sounds bad to make a sweeping statement like that but It's pretty much true. They don't even want to give you the time of day and they push you out the door without really trying to diagnose the problem. I had an appointment once with a specialist that I had to wait 3 months for and when I got to the waiting room the secretary told me my referring doctor didn't send the right details so I had to rebook the appointment for another 3 month wait. It's a real pain.

 

So basically I just want to know if my symptoms are characteristic of Celiac enough to warrant a trial diet without gluten. I just want to know if I'm being paranoid or not.

user001 Contributor
user001
Posted

I understand what you mean. I also come from that type of place, doctors yelling at me for having deficiencies when I ate healthy food! I ate my whole wheat toast and my whole wheat pasta! I moved to a much better city, better known for healthcare and still, I had to insist on testing for celiac, the doctor didn't think I had celiac and discouraged me from even being tested. To me, your symptoms sound alot like my own. If you don't want to see a doc and just want to feel better, then by all means DIVE IN to the gluten free life. I don't think you are paranoid, you should try whatever you want to see if it helps you! That's how I try to approach things. I also had depression, mostly because I always felt like crap. I had anxiety all the time also. Both improved pretty quickly. Of course I still have down days..because im human, but nothing compared to how it used to be. I would also venture to guess that you will see symptoms disappear that you really didn't realize you had. Either way, if you start eating healthy foods and not eating gluten, you will be healthier! There is nothing to lose there!

BlessedMommy Rising Star
BlessedMommy
Posted

OP, do you live in the U.S.? If so you can order your bloodwork through a private lab and self pay if you prefer not to go to a doctor.

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nvsmom Community Regular
nvsmom
Posted

 

So basically I just want to know if my symptoms are characteristic of Celiac enough to warrant a trial diet without gluten. I just want to know if I'm being paranoid or not.

 

You do, but your symptoms also warrant testing.  Please know that it can take days to weeks to months to notice improvements on the gluten-free diet for all symptoms. If you want to do a gluten-free trial, you should give it a few months.

 

The problem with that is that if you wish to test for celiac disease at a later date, you will need to do a 8-12 week gluten challenge of 1-2 slices of bread per day (or equivalent) because celiac tests will not be accurate if you are gluten-free.  Not everyone makes it through a gluten challenge- symptoms can come back with a vengeance, possibly worse than the original symptoms.  It's often not a pleasant experience to make yourself sick for 3 months, so it might be easier on your body to deal with the hassle of doctors now... That is if you want a diagnosis (because it may be the motivation needed to stay strictly gluten-free for life).

 

Good luck with whatever you decide to do.

BlessedMommy Rising Star
BlessedMommy
Posted

Yes, I agree with the above. I'm one who had a very severe reaction to gluten during my gluten challenge and thus, couldn't finish it. I guess that kind of sealed the fact that I need to be gluten-free, but I still to this day, wished that I had tested before making any dietary changes in the first place. It's sure easier than trying to go back on!

camelCase Newbie
camelCase
Posted
  • Author

@Blessed Mommy

I live in Toronto, Canada. I maybe be able to get bloodwork done though, but I want to start simply first. Thanks for the suggestion just the same.

 

@User001

I too have severe anxiety to the point where I give myself chest pains worrying about stuff.

 

Based off some of the stuff I've read, I think I want to just go off gluten. If I eat a piece of bread 3 months from now and I feel lousy right away I'll know I have a problem with it. There won't be a need for a gluten challenge. I can take a hint from my body, you know what I mean?

Jmg Mentor
Jmg
Posted

Based off some of the stuff I've read, I think I want to just go off gluten. If I eat a piece of bread 3 months from now and I feel lousy right away I'll know I have a problem with it. There won't be a need for a gluten challenge. I can take a hint from my body, you know what I mean?

 

Totally understand and your choice. However, be aware that should you subsequently decide that you'd like a firm diagnosis it may be much more difficult and painful to obtain.  This is the situation I've found myself in and I really wish I'd had the tests before giving up gluten. If you read around enough you'll see that same viewpoint made many times here and elsewhere. 

SMRI Collaborator
SMRI
Posted

The testing, at least the lab work, is simple.  It's a blood draw.  From what others report here, it's difficult to get a doctor to consent to that in Canada.  You don't need a diagnosis to go off gluten, but, if you need that diagnosis later for something else, it's difficult to get accurate results.  It's much easier to do the testing now vs later.

BlessedMommy Rising Star
BlessedMommy
Posted

If you decide to forgo celiac testing and follow a gluten-free diet permanently, it's recommended to follow your gluten free diet very strictly. The same precautions that a celiac takes should be taken, such as avoiding cross contamination, and being careful of eating at restaurants and food prepared by others.

 

Best wishes!

user001 Contributor
user001
Posted

I totally understand not wanting to do a gluten challenge before starting the school semester. If you do decide to cut gluten, I would start ASAP before the school year is in full force.

camelCase Newbie
camelCase
Posted
  • Author

Thanks everyone for all the good advice. I'm just going to stick it out. I have to give everyone an update after enough time has passed.

nvsmom Community Regular
nvsmom
Posted

Good luck!  :)

 

 

 From what others report here, it's difficult to get a doctor to consent to that in Canada.

 

That's not exactly true. In most provinces you can get the blood tests without a problem except in Ontario - they make it tough there.  Not all tests are available in all labs so that can be limiting.  It can also be very hard to get in to see a GI in some provinces; in Alberta it can take close to a year if symtoms are not extreme.

 

Yuck, we have a bad system up here.  LOL

  • 2 weeks later...
camelCase Newbie
camelCase
Posted
  • Author

So I went off gluten for a week and a lot of my skin problems nearly disappeared (yes I know a week isn't a lot of time). But then I went back to eating bread and noodles and BAM major dry skin and itching. I'm going to go off of gluten again and see if the trend repeats. Could this be the cause of my IRRITATING dry skin all along? You don't know how annoying it is to try scrubbing the dead skin off every morning. It's so hard to get rid of.

Cara in Boston Enthusiast
Cara in Boston
Posted

Looks like you have your answer.  

 

After more time gluten free, you may notice other (positive) changes that you didn't even know were symptoms.  Better sleep, more energy, etc.  My son's hair turned thick and curly after about 6 months.

 

 

I'm in year three now and this year - NO MOSQUITO BITES.  I had read that this might happen but after a couple of years, I gave up hoping . . . everyone else in the family - except me and my youngest son (also gluten free) is getting all kinds of bites.

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