I need to vent...

[Maddiecl]

I was diagnosed around 7 months ago and have been eating strict strict strict gluten-free ever since.  I finally started to see some major improvements in my symptoms at my 5-6 month mark.  I'm only 24 and I have always been very athletic and healthy with no other health problems that I know of, so I assumed I would have healed and started feeling better fairly quickly.  I'm just getting so frustrated because although I'm starting to feel better I still get sick 1-2 days a week (yep, it's happening right now).  It's absolutely miserable I get crazy nauseous and my stomach balloons out and doing any small task feels like a huge struggle.  I'm definitely seeing more good days then I was when I was first diagnosed, but I still get so frustrated and desperate feeling when I have bad days.  I have tried to pay close attention to other food intolerances, but it is hard to find a rhyme or reason to my symptoms and pinpoint what makes me sick.  I feel ready to move on with my life... Start working again, go back to school, have a baby someday... But it feels impossible to do any of these things when I'm so unpredictably sick so often.  Does it get better? Is there anything else I should be checked for or do? Please help, I want my life back. 

[Zodi1993]

Hi  

My daughter is also 24 but was diagnosed with Celiac Disease about 4 years ago. You need to give yourself a break. Some days will be better than others and you will feel so frustrated because you just want to feel normal. But this is the new an improved you.  Just a suggestion that you might consider getting allergy tested. My daughter was still feeling horrible so she ended up being allergic to sesame seeds, yeast, and shrimp. So since eliminating these from her diet her health has improved. If you haven’t met with a dietitian they can be very helpful. If your kitchen hasn’t over gone a gluten-free makeover you need to do this ASAP. You could be inadvertently  contaminating yourself. Check your makeup and shampoo etc.  I’m so sorry that you are feeling overwhelmed but I promise It will get better. 

This is an awesome forum that has lots of  really wonderful people who have loads of information. 

Hoped this helped  

[Ennis-TX]

Yeah I get rolling intolerance even 5 years into the diet.....honestly your issue sounds like you got glutened or have something else if you distended. I get the distention with Ulcerative Colitis flares also.
The day you got sick did you eat anything new or do something that might have CCed your food? IE forgot to wash your hands after handling something CCed? Walked through a bakery area in a store and inhaled flour (it will get stuck in your mucus in your nose then drain into your stomach-intestines). Tried a new food that was made on equipment or might have contained wheat? Ate out or ate something fixed by someone else?
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They do suggest getting follow up blood test every so often to see what your antibody numbers are at and if they are going down might be worth getting yours checked.

If it is any condolence I am having vomiting issues myself nasua and D for 3 days....not gluten I know but something else. Food diary and cross references ingredients leaves me with a few sad culprits and one I am  hopeful for. 1. Tapioca Starch, 2. Olive Oil (I had the issue with it go away over half a year ago). OR I am hoping I got salmonella poisoning as I just realized the eggs I have are on from that last batch they said to toss out.....

Anyway double check the newbie 101 thread to see if you missed something? Maybe a cooking pan/appliances/utensil got glutened?  And reference your food diary, try mixing up your meals more with more basic and rotating diet to find the culprit.
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[Maddiecl]

Thank you both for the replies. At my 6 month mark I had a repeat endoscopy and colonoscopy.  A bunch of biopsies were taken and from what my doctor told me I had no other gastro issues besides the celiac and my villi looked much better but not healed.  I have also been tested for nutrient deficiencies and my doctor said everything actually came back better than average.  I have made my entire kitchen gluten-free, even got new pot, pans, utensils, strainer, bowls, etc.  I have tried keeping a food journal but no matter how hard I try I cannot figure out a rhyme or reason to my symptoms.  One day I think something makes me sick and the next day it doesn't.  I would like to be tested for food sensitivities but my doctor told me the test wasn't very accurate and just tried to talk me out of it.  

 

Ennis_TX  I feel you, it is SO frustrating to feel sick and know there is no way it is from gluten! I hope you figure it out soon!

[cyclinglady]

Congratulations on the repeat endoscopy and colonoscopy indicating some healing!  That is great news.  But even the most seasoned celiac can get hidden exposures to gluten (I know I did).  It is so frustrating.  

Consider trying the Fasano gluten-free diet developed for those who are somehow still getting exposure to gluten.  

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You might think you are gluten free, but maybe you are not.  Besides your kitchen, are your pets gluten free (if you have any).  Do you ever eat out?  One member was getting glutened by her babies who smothered her with slobbery kisses.  Have you eliminated even gluten-free oats?  What about lactose?