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Pain Meds

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I have had this guilty feeling with this disease that I should be able to manage it without needing additional help, I am realizing I am wrong. For 5 months now I have had constant 24/7 pain in my upper belly, with never one minute of relief not even when I sleep. I have constant worsening thoracic and rib cage pain that has not improved even 1% since being gluten free. My Gi guy thinks I likely do have refractory celiac disease. I cannot manage the pain anymore, I suffer through the day just trying to get by, but am so depressed over even waking up in the morning, it is hard to even think about facing another day in this agony. I have been reluctant to take any pain meds, but my qulaity of life sucks so bad, most days I am not sure I want to get out bed. Should I continue to suffer through it, hoping it will get better?? I need some sort of relief and soon, I feel like I am dying

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I don't see a point in suffering if you don't have to. I don't even remember what it is like not to be in pain every moment of every day, even if my pain isn't the same as yours. I'm sure it's difficult to hope it will get better when it's been months with no relief. I don't know what to suggest you take, but by all means seek relief!

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Have you ruled out other intolerances? Soy is one that gives me the issues you are describing but others may find those issues with casien or nightshades. I did find Pepto Bismal liquid to be helpful. If you haven't tried it you may want to. One dose stops that pain in it's tracks when I get soyed. It might not help with associated C or D though.

If you need meds short term talk to your doctor about it.

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I have not looked into soy as an intolerance, I guess because I figured it would ache when I ingest it, but really my pain is constant? Maybe that is what other intolerances do is to create constant pain?? So confused with all of this, I can ceratinly do gluten free, but it seems like soy is in everything else that is labeled gluten free? I have not tried pepto, I presume it is a gluten free med?

I am truly thankful for everyone on this site who offers help. I feel incredibly alone through this, and my poor wife is beside herself and just wants me back to my old self.

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I felt like I was glutened 24/7 even though I was not. It was corn. Corn syrup mainly. I actually feel worse with corn than I do with gluten. Maybe cut that out and see if you feel better! Just an idea. :)

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I agrre, your problems may be another food intolerance? Soy causes me more symptoms than gluten. It even causes bone pain that lasts for days. Many of us have additional intolerances. It's very common.

It's difficult to know what you're reacting to without a bit of detective work.

Keep a log of all food you eat. Note any symptoms, even if you don't think they're related. Many food reactions can happen in hours or days after ingestion. It's not immediate.

Please read this link. Many Dr.s don't think to look for issues other than gluten once they DX Celiac.

http://www.celiac.com/articles/50/1/Main-Causes-of-Flattened-Villi/Page1.html

Good luck to you!

"For all of the riches that one can obtain...the greatest of these is freedom from pain."

A quote that was on a sign in my Dr's office. ;)

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I suggest just eating plain brown cooked rice, steamed or boiled veggies and skinless cooked chicken for a while to calm everything down. Then later on you can experiment with adding in a food item one at a time every two or three days or so, or even just once a week. Avoid sugar like the plague, as well as processed foods. Keep a food diary and also note how you feel plus your pulse before and after you eat, and then a couple of hours after you eat. If it goes way up, its a sign of yet another sensitivity.

Marshmallow root capsules or tea meanwhile should help stop some of the inflammation in your digestive system by soothing and healing the tissues of your intestines. Dandelion root caps or tea can also help by getting your peristalsis going. Sometimes the pain is from a sluggish gut that needs help from the liver and gall bladder that might not be doing their job.

Avoid fried anything for now and see if that doesn't help too. You can put a little safflower or sunflower oil on your food if olive oil or coconut oil disagrees with you.

Some of us are sensitive to some vegetables and most fruit and nuts and spices too. If you continue to have problems on this simplified diet that might also be something to look into. Check out the Feingold Diet and the salicylate sensitivity forum. Some are more sensitive this way than others, myself included. I still manage to eat plenty of veggies; I just have to be careful of which ones I eat. And now I don't use many spices at all and no nuts or seeds and have drastically reduced the medicinal herbs I take.

For some even brown rice is a problem. For them going on a grain free paleolithic or specific carbohydrate diet helps.

Often the inclusion of home made soured foods helps heal the gut devoid of proper bacteria--so that is another avenue to explore later on. I am doing this now and find it is making me feel better plus I am less prone to being quite so allergic to to everything.

Good luck. I am certain there is an answer for your problem out there. It just takes being a bit of a detective and being systematic and consistent about it.

Bea

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