Celiac for 2 years...bad complications

[kwilke]

Hello all,

My wife (age 50) two years ago was diagnosed with celiac disease by the local gastroenterologist.  Yes the biopsy was done and it showed she had celiac.  I decided to go along with here and bothe her and I have been completely gluten free for the past two years.
Here is a list of the issues that have happened since then and they are getting worse and worse:
1)  She has a constant migraine.  She goes to sleep with a migraine and wakes up with one.  She is on butol (drug that has codeine in it).  It helps manage the pain but it does not relieve it.
2)  Her bowel movements are very large and extremely hard.  If she does not take dulcosate and generalac then she has to start digging out the bowels.
3)  Recently she has been vomiting when she eats or drinks anything - even water.  
4)  In one month she has lost 20 pounds.
5)  Not only does she wake up with migraines but she also wakes up and starts vomitting.  There have been times where I have been listening to her (or praying for her) and she is sleeping (and snoring - seems to be in a deep sleep) then she suddenly wakes up and starts vomitting.
The physicians have no idea what to give her, since almost every type of pill they have tried to give her (pain, anti-depressants, almost everything) within 30 minutes she will vomit them up.
I have no idea what to do or where to go for this.
My wife is wasting away before my eyes and no one seems to be able to help her.
Thanks,
Kelly W.

[KAR789]

How is your wife.  I agree - you must get an MRI. Morning vomitting especially can indicate a brain tumor!  (It did in my child, she has cancer.)  Please get checked out. Karen R.

[Lynn_C]

Even the drug she is taking for migranes might have gluten in it -- check with the manufacturer...Also, she may be allergic to the medicine or even some other food. She could try an elimination or rotation diet to try to identify the food. Try to get a second opinion with another doctor though -- I have found that there can be a *wide* range in quality of care from dr. to dr.

[CalGal]

Kelly, are you absolutely sure you're gluten-free? There are a heck of a lot of sources of hidden gluten. My husband is really a stickler when it comes to GF, but he's gotten hit many times from things that were cross-contaminated in the plant in which they were processed. In addition, after attending a food safety conference in Las Vegas, he found there are many sources of foods he's going to have to be VERY careful of. Many foods (corn, etc) can be transported in the same trucks and stored in the same silos as wheat, rye, etc., so we've had to cut out things unless they're completely fresh. We get oats from glutenfreeoats.com and he seems to be okay with those. But many people aren't. There a small protein in oats that some may react to.

Spices can contain flour, as can other things I initially didn't realize. We've also found out the hard way that there can be flour mixes that are GF, but if they contain cornstarch he breaks out.

Also consider checking to see if she's cross-reactive to casein, the major protein in dairy. Many celiacs are.

But there are some celiacs who don't respond to diet, unfortunately. If that's the case please check back with your doc.

[debola53]

It is me again-has anyone checked for a brain tumor? It can cause all her symptoms. Debi

[debola53]

I am so sorry about your wife. Has anyone checked her pancreas? That can cause vomiting and weight loss. It seems like she needs to go to a specialist. I don't know where you live, but I would get a referral to a large medical center who specializes in GI issues. Don't just take what your doctor says. If he can't figure out what it is, go elsewhere. I don't know what you beliefs are, but you may want to try a medical intuitive-that and a really good doctor helped me. Keep fighting because someone will be able to figure this out. I assume an MRI or other scans have been done. Good luck-Debi