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Hi everyone,
I hope you are all as well as you can be.
I haven't been on because I'm feeling very depressed at the moment (just want to be my dog and my main carer, both of them keep me going). Anyways things are slowly going down hill for me, had my blood test for coeliac and guess what, it came back neg. I have continued eating gluten and my symptoms are getting worse, the rash was just on my legs but now it is also on my arms, back and front. Been to the dietician ans she is worried about my weight, lost 7lb in two month, my iron count is low and my lft's are all to pot. From my mouth to my anus feels red hot and sore, it feels as though I'm sitting on a warming plate
I am alternating between C & D, sometimes both together. I go for a liver scan on monday, then have to see doc, a gastro specialist another coeliac blood test and go see about getting some new legs.
Just wish I could curl up and fade away(not really )
I sorry you are not feeling well. I can't remember, were you diagnosed as being gluten intolerant from a colonoscopy? If so, gluten is not your friend. Coeliac has to very advanced to be detected with a blood test.
I was diagnosed as gluten intolerant 10 years ago. I control my symptoms through diet alone. There can be challenges to cutting gluten out of your diet but they can be overcome. Feel free to ask questions or just vent. We are here for you.
Ian
sorry you are feeling so poorly and having the combo of symptoms.....
pretty much every person on this forum that had the blood test for celiac tested negative, then 98% of them when they eliminated Gluten had a huge reduction in symptoms ( I would estimate this is the case for a few hundred people)
that's a pretty good stat - I can only encourage you that if you want to reduce the symptoms get rid of the gluten!!
the inflammation caused by ingesting the gluten, would be making the depression 5 times worse.
the choice is yours, to have the option of a solution, that does not involve medication, is not that expensive, not that hard - why wouldn't you try it?
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Oh Ian, you poor thing! it sounds like you have a rash like Zizzle does. She finally had to go on prednisone... and is doing well.
I have to echo everyone else. You must take gluten out of your diet and keep it out completely! What most of us have is NON-CELIAC GLUTEN INTOLERANCE. You must stop looking for this horribly inadequate blood test to tell you what you already know. You also might have more foods that should be eliminated. Most of us have to make big changes to our diet to feel better... especially when we are at our worst. have you stopeed eating RAW fruits and veggies? acid foods? high sugar foods? DAIRY? There are so many culprits that can make our symptoms much worse and prevent us from getting better.
I know you feel depressed, but you'd be surprised how much better you will feel when your symptoms aren't controlling you.
PS Gluten half-antibodies stay in your body for months. healing takes even longer. This is a long road, but you have to decide to take control and be determined to succeed. It can be done.
I'm sorry that your symptoms are becoming worse. Back when I was still reacting, I also alternated between D and C.
I can only agree with everyone else that gluten is the main cause of all your digestive system issues and your rash. Virtually none of us originally believed that we were sensitive to gluten either (and neither did any of our doctors), but we eventually discovered that cutting it out of our diet was our ticket back to good health.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
My recollection is that you were having a hard time determining how you could manage eating gluten-free because you are in a wheelchair and must rely on someone bringing your meals to you, or your caretaker making a meal or two when visiting.
If you are limited to two meals brought in or made by someone else, I'd suggest lunch and dinner, of course. Breakfast can be GF cereal with a banana or eggs with bacon. I think you could easily manage those yourself.
Have you discussed gluten-free options with your caretaker? If you stay with fruits, vegetables and meats, rice, potatoes, etc., you shouldn't need any special meal preparation. Breads, muffins, cookies and other treats are what require special preparation. If you want those foods, you will need to see if your caretaker can arrange to purchase or make them.
I think it is doable and I agree that you are probably gluten-intolerant.
Good luck with your plan, and I hope your caretaker can accomodate your menu needs.
Gloria
You never know what you can do until you have to do it.
Hi everyone,
I know for certain that I cannot cope with gluten, my doctor just wants me to have it confirmed, once I have had the blood test and endoscopy done I am taking myself off gluten, I dion't care what the doctor says, as they aren't giving me anything to try and make things easier for me. In the past I did come off gluten and felt a 1000% better. Just have to grin and bear it till the end of the month
I can feel your pain and contrary to the test by the docs which will probably be negative, gluten is just something we cannot deal with. Hard to accept but sounds like you have.
Maggie
Maggie Scarpone
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Resident Birder - I live to bird and enjoy life!
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