Looking For Help While Pre-Testing :(

[Kendryx]

Before I start with my problem, I should introduce my situation a little. 

 

So I've been gluten-free for about 3 years now after being sick and having a lot of digistive problem, anxiety, anemia and horrible bowl movements. I actually got the suggestion from a friend and when I brought it to the attention of my former doctor, she said to get rid of gluten from my diet and if it works, then I probably have a gluten sensitivity or celiac disease. I restricted my diet and it got better, slowly however about 8-10 months ago, it started getting worse. Not hugely, but the things that used to be okay for me, were getting me sick. A good friend of mine explained to me that it could be that what I thought was a senstiively was actually celiac disease and because I cooked food in a household (well, two really) that were full of non-gluten-free things, cross contamination could be an issue. My mother recently got diagnosed with celiac disease and after talking to my doctor (new one), he said I should start the blood test first and then the biopsy to see if I am correct about my suspicisons. I should mention I'm only 24 years old but my symptoms; bloating, abdominal pain, bloody stools, diaherra (4-5 days a week), mood swings, anxiety and anemia, fit the celiac disease now that I have a family member who actually has it.

 

So, my problem lies in the issue that I am starting to eat gluten products tomorrow as I was too chicken to eat it today and I'm super nervous about the symptoms. When I have a small amount of cross contamination (or what I think is cross contamination) I don't get better for days. How did everyone else survive your tests and what advice can you give me to help with the pain and symptoms?

 

Thanks

[BlessedMommy]

I technically didn't survive my tests--I ended up in the ER of the hospital 10 days after I started eating gluten again and we all decided that it wasn't worth it for the sake of a DX. So I'm on a strict gluten-free diet for life with no diagnosis. At this point, I know that eating gluten for 3 months would likely kill me or disable me, so it's not something that I will ever do. So unless medical science figures out a way to get DX'ed without a gluten challenge, I won't be getting DX'ed. (and even if they do come up with a DX method, I'm not sure that I would bother anyway, since if I got DX'ed, they would just tell me to do what I'm doing already, which is being 100% gluten free)

 

I don't recommend that, though, so if you can get through at least a long enough gluten challenge for a biopsy, that is probably better. 

 

My #1 advice is do not overdo the gluten. One slice of bread a day is plenty! My #2 advice is to use common sense and get medical supervision, especially if symptoms are getting serious. Don't ignore them and do what I did. 

[nvsmom]

Welcome to the board.  

 

Like Ruth said, not everyone makes it through a gluten challenge.  Some have relatively few symptoms whereas others can not function.  If you think you will be in the latter group, I would advise skipping the testing.  When the test results come back positive you'll just have to go back to what you were doing in the first place but with a 3 month period of illness followed by a few months of recovery... it may not be worth it in your case.

 

The shorter challenge for an endoscopic biopsy would probably be the better option, if your doctor agrees to it, and if you can handle the 2-3 weeks of gluten.

 

Have you tried the blood tests?  The DGP IgA and DGP IgG are good tests for checking dietary compliance.  They tend to change faster according to your dietary changes.  The tTG IgA and tTG IgA can linger positive for many weeks or months in some people so it could tell you something. It might be worth checking even though with a gluten-free diet they should be negative.

 

Good luck with rechecking your food items for cc. I hope you find the problem soon.

[Kendryx]

Thanks for the replies!

 

I started Thursday and I'll be honest, at first I thought I could tolerate it however by Sunday, I was miserable. Not to the point where an ER visit would be necessary but enough to make me rethink this whole testing thing at the moment. I've put about 4-5 inches on my waist from bloating, it's constantly in pain to the point where moving makes it spike the pain. When I'm not doing anything, I'm sitting at about a 5 in pain, almost like the pain similar to menstration. I did come across a new sympton today! 

 

This morning I woke up with a itchy yet slightly painful rash on my neck and chest. I had shingles about 3 months ago and it doesn't feel like that. I made an appointment with the doctor to review this. I won't go into detail but they are spreading and its very uncomfortable. I've decided to stop the test. I'm going to remain having a strict gluten-free diet and just hope in the future they come up with a better way of testing. 

 

Thanks everyone for the help and support but all in all, I cannot survive on this test. 

[BlessedMommy]

It sounds like you already have your answer--gluten quite obviously causes you misery. If you are fully convinced in your mind that you have a serious issue and decide to never, ever cheat, that's half the battle won right there.

 

 I really don't have that many people in my life who care that much whether I have celiac or not. People generally know that I was in the ER from gluten issues and that I'm quite strict in my diet. My inlaws are so supportive of my diet, that with their own money, they bought a separate brand new grill for use only on gluten free food.

 

Really as adults, there's not many times when a diagnosis is indispensable.

 

The one time where being in the hospital was an issue (when I was in there with my son after his broken leg) nobody made us present proof of celiac to order off the gluten-free menu.    I don't commit crimes, so I'm not planning on testing out whether prison offers gluten-free food or not.  

 

I plan on taking my girls to a weekend mother daughter retreat this year and we're just going to bring our own food. No way would I trust the cafeteria there to make anything gluten-free.

 

I'll be the first person to say that if you can get a DX, then do it, but you can function without one. Clean out your house from all cross contamination, let your family members know that you are strictly gluten-free, and make BYOF (bring your own food) your motto. Treat things just like a celiac and if a restaurant doesn't have a good gluten-free option, don't eat there. Save your business for the places that you know can do gluten-free food right.

 

You can do it!

 

Good luck!

[nvsmom]

Thanks for the replies!

 

I started Thursday and I'll be honest, at first I thought I could tolerate it however by Sunday, I was miserable. Not to the point where an ER visit would be necessary but enough to make me rethink this whole testing thing at the moment. I've put about 4-5 inches on my waist from bloating, it's constantly in pain to the point where moving makes it spike the pain. When I'm not doing anything, I'm sitting at about a 5 in pain, almost like the pain similar to menstration. I did come across a new sympton today! 

 

This morning I woke up with a itchy yet slightly painful rash on my neck and chest. I had shingles about 3 months ago and it doesn't feel like that. I made an appointment with the doctor to review this. I won't go into detail but they are spreading and its very uncomfortable. I've decided to stop the test. I'm going to remain having a strict gluten-free diet and just hope in the future they come up with a better way of testing. 

 

Thanks everyone for the help and support but all in all, I cannot survive on this test. 

 

That's too bad that it hit you so hard. I suppose that is an answer in and of itself.

 

Best wishes with the gluten-free diet again.  Hope you are well soon.