Help Please

[camiboxer]

Hubby has been suffering for 15 years with all of the classic symptoms of celiac disease. He has what I refer to as crashes or attacks. He was originally DX'ed in 1992 with IBS. Put on Xanax and Paxil since stress is a trigger. Eliminate stress and his IBS would be better..... He did well for a period of time. Never fully recovered but the level of his discomfort was managable. He had a colonoscopy and an endo. Both clear.

He had another attack. This time the ER diagnosed him as having pancreatitis. This particular attack he had been vomiting. His liver values were affected this time (could have been the vomiting-could have been pancreatitis??).

Since he had stopped taking the above mentioned meds he was then put on Ativan & Paxil. Same thing, pancreatitis is triggered by stress, eliminate the stress, blah blah blah.

Again, managed to overcome the debilitating pain and recover from the attack but never felt "right".

Starts deciding that certain foods make him worse and tries to avoid them. Some gluten products, others not.

Does ok for a few more years. Has another attack. Ends up losing 40 pounds in under two months, misses 3+ weeks of work. Sees a GI doc again. Another colonoscopy. Everything tests fine. He can't afford to lose weight. Already thin to start with. Over the course of the next year he manages to gain most of the weight back. Still taking Ativan.

Fast forward to nearly 3 weeks ago. Gets D while at work. Terribly bad stomach pains, back pain, cramping, bloating, stomach gurgling, intermittent constipation. After suffering all week trying to work he takes Friday off and sees family Dr. who diagnosed him with muscular problems in the lower back area. Prescribed Skelaxin (muscle relaxer and pain meds), and signed him up for physical therapy. Takes the muscle relaxer and ends up in the ER on Sat.

Blood tests, urine testing and a CT scan are all clean. Sent home with even more pain meds. He wouldn't take them.

Headed back to his family Dr. on Monday. Another round of blood tests and another CT scan. Both clear. Prescribed Xanax again, took for 3 days and it threw him for a loop and he stopped taking it.

Referred to a GI doc.

He has been off of work now for 6 days. In terrible pain, losing weight. Anything he eats causes further distress.

Got online in an attempt to help him and came across celiac disease. We think he may have it and are calling his family Dr. tomorrow to have the blood testing done.

Is it normal for someone to have such a bad attack that they miss work until they are diagnosed?

[nora-n]

My DD2 had lots of stomach pains and ended up in the hospital with them. This was several years before the diagnosis of celiac. Thye doctors alsways said it was nerves...

[ravenwoodglass]

Hubby has been suffering for 15 years with all of the classic symptoms of celiac disease. He has what I refer to as crashes or attacks. He was originally DX'ed in 1992 with IBS. Put on Xanax and Paxil since stress is a trigger. Eliminate stress and his IBS would be better..... He did well for a period of time. Never fully recovered but the level of his discomfort was managable. He had a colonoscopy and an endo. Both clear.

He had another attack. This time the ER diagnosed him as having pancreatitis. This particular attack he had been vomiting. His liver values were affected this time (could have been the vomiting-could have been pancreatitis??).

Since he had stopped taking the above mentioned meds he was then put on Ativan & Paxil. Same thing, pancreatitis is triggered by stress, eliminate the stress, blah blah blah.

Again, managed to overcome the debilitating pain and recover from the attack but never felt "right".

Starts deciding that certain foods make him worse and tries to avoid them. Some gluten products, others not.

Does ok for a few more years. Has another attack. Ends up losing 40 pounds in under two months, misses 3+ weeks of work. Sees a GI doc again. Another colonoscopy. Everything tests fine. He can't afford to lose weight. Already thin to start with. Over the course of the next year he manages to gain most of the weight back. Still taking Ativan.

Fast forward to nearly 3 weeks ago. Gets D while at work. Terribly bad stomach pains, back pain, cramping, bloating, stomach gurgling, intermittent constipation. After suffering all week trying to work he takes Friday off and sees family Dr. who diagnosed him with muscular problems in the lower back area. Prescribed Skelaxin (muscle relaxer and pain meds), and signed him up for physical therapy. Takes the muscle relaxer and ends up in the ER on Sat.

Blood tests, urine testing and a CT scan are all clean. Sent home with even more pain meds. He wouldn't take them.

Headed back to his family Dr. on Monday. Another round of blood tests and another CT scan. Both clear. Prescribed Xanax again, took for 3 days and it threw him for a loop and he stopped taking it.

Referred to a GI doc.

He has been off of work now for 6 days. In terrible pain, losing weight. Anything he eats causes further distress.

Got online in an attempt to help him and came across celiac disease. We think he may have it and are calling his family Dr. tomorrow to have the blood testing done.

Is it normal for someone to have such a bad attack that they miss work until they are diagnosed?

Yes bad attacks can be 'normal' until diagnosed. My last one lasted 5 years, thats 5 years of the symptoms that you describe for your husband including daily and nightly painful wish I could die D. I am going to be bold here and suggest that you give the diet a try. Unless you are going to insist on a repeat endo. No doctor ever told me to try the diet in the 15 years that we searched and spent countless thousands of dollars on copays and tests. The doctor who diagnosed me was an allergist. I come back negative on blood tests and he was my last hope. An elimination diet, prescribed and guided by the allergist, found my problem in less than a month.

What I would do to try and help him now is I would immediately do a modification of the Brat diet that I call the Bra. For a few days go with bananas, rice (preferably unprocessed), applesauce and plain chicken or fish for protein until the symptoms go away. That should give him some relief if gluten is the problem. If he has had D for a while do not be surprised or alarmed if he does not have a bowel movement for the first couple of days, this is normal. After he is feeling better slowly add in for sure gluten free and preferably pure and unprocessed foods until he is back to a normal but gluten free diet. Then give the diet a good 3 months or so, although I think you will notice an amazing improvement before that if gluten is the cause of his misery.

In addition make sure all his meds are Gluten Free, there are no gluten restrictions or labeling requirements with drugs. The generics are the biggest risk. I stopped all of mine, actually weaned off would be a better way to put it, before I began the elimination diet, real painful for a bit but I never had to add any back in but for many that is not something they can do.