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Overwhelmed

Mortiis

By Mortiis
in Coping with Celiac Disease

Recommended Posts

Mortiis Rookie
Mortiis
Posted

Hi, I diagnosed myself with celiac disease about 3 months ago (after suffering with stomach aches and trouble with digestion for the last 5-10 years, which the doctors failed to diagnose the whole time)

Since I've been eating gluten free, which has stopped the stomach aches and problems with digestion, I just feel overwhelmed. I need to get used to the fact that I can't really eat out anymore or travel anywhere and that I'll spend the rest of my life paying more money for foid that doesn't taste as good. I'm still having issues though. I only really eat food that's specifically been made to be gluten free but today I had some gluten free pasta and now have a stomach ache. I think I had trouble with it a few weeks ago too, is it possible that even some gluten-free food should be avoided? Or am I drawing the wrong conclusions? Just don't know what to do, still new to this

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rehh05 Apprentice
rehh05
Posted

Well, first of all, self diagnosis is tricky at best. It is possible you may have other food sensitivities or allergies or something else is going on with your digestive system. Did you have the celiac panel run before you went gluten free? Did your GI doctor do an endoscopy and take several samples to test?  There are lots of things that can cause digestive issues. Also, if you do have celiac, it takes a long time to heal and sometime other seemingly harmless foods cause problems for awhile. Giving up gluten is not a problem or a burden once it becomes clear that gluten is actually poisonous for a celiac's body. But giving it up unnecessarily is tough.

Jasmine05 Newbie
Jasmine05
Posted

First of all, I'm sorry you have been dealing with digestive issues.   I suffered for years not knowing what was wrong with me.  But I have to agree with rehh05.  You can't really "self diagnose" without having the proper tests done.  It could be something else, but if you have gone and stay gluten-free you won't ever know for sure.  Also, celiac disease is not a death sentence.   Yes, it's a huge lifestyle change, but it's possible to still enjoy food.  I was officially diagnosed 4 months ago and have been gluten free since.  Luckily I was well educated on the disease prior to diagnosis as my grandmother also has celiac.  I am finding more and more places that will cater to people unable to tolerate gluten.  I just ask a lot of questions and read everything.  At work we order out once a week, luckily my coworkers accommodate my condition and let me pick where we order from, which has been multiple different places with no issues.  People are becoming more aware, you just need to know the right questions to ask.  I agree that there are a lot of not so tasty gluten-free packaged foods, but I have had a lot of success baking my own gluten free goodies.  There is a lot of support out there.  Pinterest has hundreds of gluten-free recipes.   I hope things get better for you.  Good luck!

Mortiis Rookie
Mortiis
Posted
  • Author

Thanks for the replies, very helpful info, I have a lot to learn.

I don't even know what the celiac panel run is lol. I haven't really had any tests done, when I went back to the doctor after diagnosing myself he just told me to carry on doing what I'm doing. They've been completely useless there.

The thing is, I'm sure people don't need too much information but there was a specific issue that resulted from the digestion issues, and that cleared up almost as soon as I went gluten-free so I know gluten is involved, but maybe I do have other allergies. Maybe this stomach ache I have now is nothing to do with the gluten-free pasta, maybe it's just coincidence (it doesn't feel like the ones I used to get nearly every day)

emma6 Enthusiast
emma6
Posted
9 hours ago, Mortiis said:

I don't even know what the celiac panel run is lol. I haven't really had any tests done, when I went back to the doctor after diagnosing myself he just told me to carry on doing what I'm doing. They've been completely useless there.

celiac panel means the blood tests to check for signs of celiac disease. how long have you been gluten free? i would get tested as soon as possible if you think you may have celiac disease. but it could also be something completely different just because you feel sick eating foods with gluten doesn't nesscessarily mean you have celiac disease.

Mortiis Rookie
Mortiis
Posted
  • Author

I've been gluten free for about 4-5 months, it was a nightmare before that and things have mostly improved but yeah I'm not sure if it's celiac or some kind of gluten intolerance/allergy. Thanks for the replies I'll go to the doctor as soon as I can to find out exactly what it is

Mortiis Rookie
Mortiis
Posted
  • Author

I've decided not to do the tests, after eating something that was apparently bad (had been careful mostly) and going back to the hell I had been going through for years, why should I go back to that for the next few weeks/months? Why does it matter to me if it's celiac disease or some other gluten intolerance/allergy? I know what gluten does to me and I'd rather just avoid it

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GFinDC Veteran
GFinDC
Posted

That's fine Mortiis.  Not everyone can make it through the gluten challenge anyway.  It's much easier to stay on gluten until all the testing is completed.  But doctors often enough give people bad advice to "try" the gluten-free diet for a while before testing.  Then they do the tests and they don't show positive because the antibodies decline when we aren't eating gluten.

It's a mad, mad, mad, mad world they sing. :)

 

emma6 Enthusiast
emma6
Posted

that's completely understandable i wouldn't want to eat something i know is making me sick either

maybe get your iron, b12 and vitamin D levels checked if you haven't already. you could also get the HLA genetic test done as you don't need to be eating gluten for that. having a gene won't diagnose you but if you do not have any of the genes you can almost rule out celiac disease.

also it can take months for antibody levels to go down so if you do have celiac disease there is a chance that you could still get a positive blood result after 4 months without eating gluten but obviously if it comes back normal that wouldn't be anything to go by.

  • 2 months later...
Amberg330 Newbie
Amberg330
Posted

I am right there with you. I was diagnosed around 6-7 months ago, I started going gluten free but would still flare up occassionally from the gluten free meals. At one point I even gave up on gluten free because I felt like it wasn't helping at all anyways and I got REALLY sick and really DEPRESSED. Just keep going strong :) 

egs1707 Enthusiast
egs1707
Posted
On 13/10/2016 at 2:03 AM, GFinDC said:

That's fine Mortiis.  Not everyone can make it through the gluten challenge anyway.  It's much easier to stay on gluten until all the testing is completed.  But doctors often enough give people bad advice to "try" the gluten-free diet for a while before testing.  Then they do the tests and they don't show positive because the antibodies decline when we aren't eating gluten.

It's a mad, mad, mad, mad world they sing. :)

 

I've been on the receiving end of that "advice" from doctors too meaning I effectively had to go a double gluten challenge <_<  Celiac seems to be the biggest blind spot in the medical profession (either through incompetence or negligence) as I can't believe how many doctors get it wrong with misdiagnosis.

May be worth having the blood tests to see what your antibody levels are like though just so you have a point of reference to work from.

Jmg Mentor
Jmg
Posted
On 10/7/2016 at 10:48 PM, Mortiis said:

Hi, I diagnosed myself with celiac disease about 3 months ago (after suffering with stomach aches and trouble with digestion for the last 5-10 years, which the doctors failed to diagnose the whole time)

Since I've been eating gluten free, which has stopped the stomach aches and problems with digestion, I just feel overwhelmed. I need to get used to the fact that I can't really eat out anymore or travel anywhere and that I'll spend the rest of my life paying more money for foid that doesn't taste as good. I'm still having issues though. I only really eat food that's specifically been made to be gluten free but today I had some gluten free pasta and now have a stomach ache. I think I had trouble with it a few weeks ago too, is it possible that even some gluten-free food should be avoided? Or am I drawing the wrong conclusions? Just don't know what to do, still new to this

It gets easier and the enormity starts to become more manageable and eventually the 'new normal'. You can of course eat out and travel, it just requires a greater level of planning and research. You'll get the hang of it in time.

Not unusual to get issues from gluten-free pasta etc, being gluten-free doesnt mean you're immune from stomach aches and I think grain based foods are often an issue. Go easy on them, I find my stomach is more delicate now than it was. Trial and error, smaller portions, noting issues in diary can all help. You may also want to try different brands of gluten-free pasta, could be the formulation or ingredients used dont agree with you. Not everything is gluten!

Best of luck!

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