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Getting Desperate For Answers

tdogg097

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tdogg097 Newbie
tdogg097
Posted

There is a lot of red tape with my insurance in getting tests done for celiac disease. Currently, I have an appointment at the end of November for blood tests and then it will probably take another month or so after that to get a scope if my blood tests come back positive. But to be honest I don't know if I can wait that long for a diagnosis because I feel so terrible right now. It took until an appt with a shrink before it was identified that it is highly likely I have celiac. Apparently I was tested for it 2 years ago and it came back positive but no one bothered to tell me.

I'm currently suffering from the following symptoms,

Severe brain fog

Intense stomach pains after eating (15-60 mins) gluten especially when combined with diary followed by serious gas

Anxiety

Depression

Mood swings

Mouth ulcers

Loss of appetite/weight loss

Severe fatigue

Joint pain

Difficulty conversating with others (finding words)

Difficulty with written communications (typing sentences that don't make sense)

I'm currently in school full-time and I can barely function right now and it frustrates me to the point where all I want to do is stay in my house all day.

Can the symptoms of celiac get to a point where it becomes an emergency? For me this has gotten progressively worse and I feel as if it's gotten to the breaking point. Should I raise my concerns with my doc to try and get seen earlier? And after diagnosis how soon did it take to see improvement? Was there anything you could do to make you heal faster?

Sorry for all the questions but I'm at a loss for answers. I appreciate any advice and answers to any of my questions.

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ravenwoodglass Mentor
ravenwoodglass
Posted

If you had positive tests 2 years ago IMHO you don't need more testing. Get your hands on copies of those tests, you have a legal right to them. I would be switching doctors after I got my records if your doctor ignored this. Having those positive tests may help you get in to get an endo sooner, if you really feel you need one. If you don't want the endo or can't suffer any longer then just get on the diet. Also contact the AMA and report the doctor who ignored the positive blood tests. Who knows how many others he has done the same thing with.

You have a very savvy psychiatrist as not many know about the correlation between mental illness and celiac. He/She should be commended.

It can take some time to heal especially when the brain and nervous system are impacted. Sublingual B12 was helpful for me and though I didn't have an overnight recovery my progress was substantial within 6 months. I was very severely impacted before diagnosis so you may well see some positive steps toward healing much sooner.

Mama2Boys Newbie
Mama2Boys
Posted

I agree with PP. That's completely and utterly terrible that they didn't let you know something so serious! I'm shocked! If I were you, I'd just go gluten-free. I personally can't get in to see a GI specialist until December and I don't think I can wait that long feeling like I do lately so I'm going to just go gluten-free and see how I feel. I may use our health insurance flex card to go the Entero route, but unless I go gluten-free and still feel crappy (ha, no pun intended) I don't see why I should have to wait at least a month to get a doctor to tell me what my body already knows.

Roda Rising Star
Roda
Posted

I would get those previous test results ASAP! With those in hand I think it should be an automatic refferal to the GI and scope sooner rather than later. I'm so sorry that someone dropped the ball and didn't tell you of the positive celiac tests two years ago. I would call and tell them how miserable you are. Ask to be put on a cancellation list to get in sooner. I did this for my oldest son's scope. I ended up going a month earlier than was originally scheduled.

Di2011 Enthusiast
Di2011
Posted

Ditto to all the above.

Get a copy of those "positive" results. You'll need those for months/years to come.

Either get a very immediate biopsy or get gluten-free. Give it a month or two (longer if like me you aren't sure and make lots of mistakes - bathroom products, kitchen stuff, at work etc) if you go gluten-free without biopsy. If you are like most, you will know if gluten free makes you feel good

Get on here and start reading about other peoples experience. You say you are at school?? High school or college etc?? There is a forum for you guys, and others might learn from your experience or you from theirs. Share it.

https://www.celiac.com/forums/forum/24-celiac-disease-teenagers-young-adults-only/

AVR1962 Collaborator
AVR1962
Posted

Assuming you can still receive med coverage even without a diagnosis, I would go off gluten. I went thru something rather similiar and could not make it to my test because I was too sick. I went back to doc, basically I wanted it documented in my records. Bottom line in all this testing is we have to do what makes us feel better. Testing for celiac is not reliable in the first place and many are put thru alot of needless pain in order to get these tests that turn out negative when they really should be on a gluten-free diet in the first place.

My suggestion would be to go off both dairy and gluten for 2 months. Dairy too because these many times walk hand in hand until our system can heal. In 2 months time, try the dairy and if it doen't work for you then continue to stay off. In time your body may be able to digest it again. Then try to gluten if you think you want to test it and if not, just stay off.

The brain fog will pass once you are on a real strict gluten free diet, read all labels and become familiar with the grain names. Basically, think of it this way.....only eat rice, corn, gluten-free oats and cereals. In the beginning I even avoided gluten-free products such as the breads.

Bone pain could be an indicator that your vit d levels are low. Fatigue could be due to a lack of magnesium, d or iron or a combo. It might not hurt to get a real good multi vit that is gluten free if you are not taking one. If you get blood work for vit levels make sure you request a copy so you can actually see the results. I have found docs have not been good about telling me the results of my tests.

Keep us informed.

tdogg097 Newbie
tdogg097
Posted
  • Author

Thanks all for the words of advice. I got into it with my insurance and basically wouldn't take no for an answer. They were able to get me in tomorrow so we'll see how it goes. I'm going to press for the referral for the GI without the results from the second test based on the first test. I'll update once I get the results.

Thanks again.

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