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They are big on selling books -. They try to spam a lot forums and FB groups. why can't you eat nuts, nut flours, quinoa, hummus and beans? I think I missed that. Those are a good source of protein. If you can't digest lactose look for a lactose free cheese - like one made from yogurt. at first,I thought life was over. But with a few years of experience, I have found it isn't that big of a deal. It helps to have an attitude of "I am not here for the food. I am here for the wine ( or the company . ). Also helps to not care what people think - "I don't care if you think it's odd that I brought my own lunch to the funeral luncheon. "( And it helps that my lunch looks better than theirs lol.) -
By cyclinglady · Posted
Gracey, It am a mother and I am going to give you some valuable advice. You need to keep and document everything related to your health. Every lab test result, notes from your doctor's visits, etc. Why? Because only you are your best health advocate (except for your mom). Doctors come and go, but it is up to you to manage your health. When I changed insurance and doctors, I had copies of all my medical records in hand. My new PCP was impressed. There was no doubt that I had celiac disease, fractures, Hashimoto's and diabetes, anemia, etc. I had physical proof. As an result, she was quick to refer me to a new GI and order tests to measure my progress (e.g bone scans). My family health history chart helped not just me, but other family members. So, find out if biopsies were taken during your endoscopy. Get the pathologist's report. See if your doctor checked for other issues besides celiac disease. Hugs! -
I don't do grieving, bad enough for something that's been taken away in the past but to know my future is pretty much gone now just feels too much. The only time I've forgot about the unfolding nightmare was during my hour or so of sport so need to cling onto that at the moment or I fear going to a very dark place indeed. Yup that SCD site is terrifying, still can't make up my mind if they're giving out useful information to genuinely help people or using scare tactics to sell their books etc.
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By cyclinglady · Posted
I agree with all the advice you have been given. It is excellent! I just want to add that things will get better. There is a huge grieving process to go through. Do not fight it. You have a right to grieve as your health and lifestyle will change, but you will adapt! Exercise gently until you feel a bit better. There is plenty of time to exercise hard later. Taken this advice from a gal who just rode 40 miles (no biggie you say) this morning on her bike through the Santa Ana winds (better known as the Devil's winds!). But I am three years into my recovery. I took it easy the first six months because I was anemic. I teach few exercise classes, bike, swim and run and I am in my 50's. The SCD website? It can scare the (bleep) out of you. There was one point that I took from the site and that was to stick to whole nourishing foods. No rocket science -- just common sense. -
Thanks for the replies so far everyone, much appreciated Great, another doctor gets it wrong, how many more times can they make a mess of this diagnosis process?! Bloating had gone down a bit in these first few days of cutting the gluten so I guess expect that to come back. It's one way to have a farewell tour of the gluten foods I guess - if a little or a lot makes no difference may as well go all-in... The doctors didn't diagnose this at all, Google did. If I trusted in the health professionals I'd be blaming the symptoms all on stress and having counselling for it whilst the fire raged on inside me due to a clinical condition they'd missed. Just glad one of doctors agreed to run the test on second time of asking to keep me quiet as much as anything. Believe me I've read that newbie thread multiple times, as well as numerous others around the web. Been doing nothing but since Tuesday when the blood test results came back and each time I go into the comments sections a little bit more of me gives up inside. Seems so many don't ever heal and so many associated complications too. The reality looks bleak apart from a lucky few it seems. In the nicest possible way the vegetarian choice is non-negotiable, it's a core part of what I believe and the thought of eating any form of animal \ fish flesh would make me physically sick (sorry meat eaters) so will have to find some way around it, how I don't know yet. Perhaps lots of this... http://www.pulsin.co.uk/pea-protein-isolate.html The cooking bit is a concern as it's something none of us do well at home, adds to the feeling of being completely lost right now. I kick myself for the decision that lead to the stress as I could've avoided all this. The only thing I can cling onto there is that I was having some pains in the side before that time which I blamed on a muscle strain... maybe that was the early stages, in which case I could feel a bit better knowing it had just come on gradually. With the biopsy and gluten from what I read the villi take a long time to heal up so they'd still see that. With the blood test result as definitive as it was surely the disease is pretty much confirmed? How can it heal enough for non eating gluten to throw a biopsy result yet on the flip side take over a year to heal (that sounds like the best case scenario time-wise from what I've read). Not suggesting anyone is wrong for one second but need to understand how that works with what's going on inside to make any sense of this situation.
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By ravenwoodglass · Posted
Welcome to the board. Celiac is not a death sentence by any means. I was undiagnosed from age 4 to age 46. Words can not describe the hell of the last 15 years before I was finally diagnosed. I am alive and healthier than I have ever been. There are others who also went years and are now doing well. There are some who had complications of cuorse but not everyone does. Thankfully it sounds like your doctors have found this relatively early. You should recover in time. Do be sure to read that Newbie thread and if you can get the others you live with to read it also. You can live safely in a mixed house but you to have to take precautions to be safe. As the others stated you do need to get back on gluten until all celiac related testing is done. You don't have to eat a lot but if your going to get biopsies done you do have to have some daily. Most of all try to relax. Having celiac does take some getting used to but you will be okay.
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