Discussion Board

Well I am going to keep fingers crossed that what ever is wrong is a simple fix hopefully just gluten related so you can just tweekl your diet and feel lots better.

And you are right it is a good idea to not wait too long to get things checked out. Especially if there is a family history of problems.

Well another reason I need an endoscopy is that a few years ago my mother was diagnosed with gastric antral vascular ectasia (watermelon stomach). I had never heard of it before. She told me that it is when the stomach resembles a watermelon and bleeds. She was anemic and after ruling out other things, the Dr. ordered an endoscopy and discovered she had stomach bleeding. I am anemic also. Anemia can be caused by lots of different things. I want to make sure that the symptoms I am having are not caused by something else like what my mother has. These tests are not simply to find out what makes me feel good or bad, but to find out exactly what is causing my problems which I've had for many years. I had a round of tests last summer also. This will make at least my second summer of testing. But like you said, hopefully I can get some answers and not just guess what's wrong. Thankfully I have good insurance.

yes if you can get the test and are ok with it, do so. at least in my case not having "proof" can be an issue in a hospital or other setting where you are left to feel like this problem doesnt exist or they dont take it seriously. and it can put at ease in your head if you can possibly have it later or if this is a closed door for you. but when i spoke to a nutritionist he told me either its celiac or a severe gluten intolerance and both ways the outcome were the same. i just couldnt stand the idea of a biopsy but now i wish i did it. wish you the best!

Another reason is insurance. If it does turn out that I have celiac and I also have conditions related to that, I want to make sure my insurance will pay for any other treatment. A lot of people think that changing the way you eat will "cure" celiac or at least relieve the symptoms, but that is not always the case with older people like myself. Sometimes people who are diagnosed later in life do not respond to simply eating a gluten-free diet if they have had it a long time. As we all know in the past anyway, doctors were not as aware of celiac in older people so did not diagnose it correctly and people suffered for years with it before being diagnosed. If diet does not relieve symptoms there are other treatments and if that happens to be the case with me I want a proper diagnoses to be on my medical records. If I don't have celiac, then I want know that too so I won't have to worry about everything I eat since gluten is in so many things. I even read the label on some pecans my husband bought a few weeks ago and it said they were processed in a plant that also processed wheat. It's everywhere in places where you wouldn't normally suspect---including lipstick and some prescription medications. Undiagnosed celiac disease can lead to a shorter life. They can't even have 1/8 of a teaspoon of gluten a day without it damaging their intestines. If I am going to have to be that scrutinizing about what I eat then I want to know for sure whether I have it or not.

Very good points Grandma Jackie. However, even with a negative biopsy, it is possible for you to be very gluten intolerant and need to avoid all forms of gluten. Once you have your diagnosis, give it a try and see how you feel.

I plan to. I was doing Maximum Weight Loss before I decided to ask my dr. about testing for celiac. I had not cut out bread completely however, so was able to get the bloodwork done. As soon as I get the endoscopy and biopsy I plan to continue to do the Mximum Weight Loss program and cut out bread and flour completely at least until I lose the weight. Then I plan on staying on the regular McDougall Plan for the rest of my life. However neither the McDougall Maximum Weight Loss Plan or regular McDougall Plan ban wheat, barley or rye. So I wanted to find out for sure if I really needed to cut those grains out or not. I absolutely love whole-grain wheat and rye bread and I will miss them if I do test 100% positive for celiac. However I will do whatever is neccessary to feel better. I have so much bloating and have to poop 6-8 times a day! (I know-TMI ). I need to know for sure what is causing that and other symptoms I have. No matter what, being on the McDougall program is a step in the right direction.

I was notified today that my biopsy came back positive for Celiac Disease. That sure does answer a lot of questions about the physical problems I've had. When I think back over my life and the medical history of my family, it all makes sense now.

That must be a releif. I know gluten give me severe problems but not bad enough to warrant a test, as I would have to eat wheat gluten for a significant amount of time, and you can bet I'd be unabvle to go to work or school or do anything in that time. I would have to get someone to take care of me.

So, better to just avoid wheat gluten and live without a diagnosis.

Well I absolutely love whole wheat bread, flour tortillas and shredded wheat and bran flakes cereal. If I was going to have to give those things up forever, I needed to have a good reason to or I would relapse into eating them. I also wanted a firm diagnosis for insurance purposes. I am not sure even eliminating glutin from my diet will "cure" me. The doctor said that some older people like myself don't always respond to a gluten-free diet even though they have to stay on it for life. I sure hope I do though since my symptoms had been steadily getting worse.

im glad you have a diagnosis. for many a diagnosis is needed to make changes, some of us just know that certain foods cause us pain so thats enough. give yourself a month or two. trust me it takes a long time for the gut to heal. especially if you are not in what is considered a "healthy" state. i wish you the best!

Thank you. Many autoimmune diseases mimic each other. For instance peripheral neuropathy is common in diabetics and sometimes people with hypothyroidism. For years my doctor had been telling me that the tingling in my hands and feet were because of my hypothyroidism. However she said there was nothing she could do about it because my thyroid levels were normal with medication. Well that didn't set very well with me because it was getting worse. If my thyroid levels were normal why was the tingling and numbness getting worse? It just didn't compute. So I asked her to test me for Celiac Disease, which she did and then referred me to a gastroenterologist who confirmed it. The reason it causes peripheral neuropathy is because people with Celiac don't absorb all the vitamins they need and that was what was causing the tingling and numbness. I don't know at this stage if it will clear up or just not get worse as the nerves may already be damaged, but it was getting pretty bad. As you can see, I can still type , but I can't turn pages in a book easily and it feels like my feet are going to sleep if I sit still for more than a few minutes---really aggravating. Anyway, as I've said before, I will now be returning to McDougall's Maximum Weight Loss Plan and stay on it for life. I will never be able to eat whole wheat bread again, even though that's allowed on his regular plan, but I can live with that. I have actually found some gluten-free bread that tastes a lot like whole wheat and will eat that after I lose my excess weight. So there is life after wheat afterall.

have you had your b12 levels tested? you can also get symptoms like that from low b12 and its serious so something you want to be on top of.

my favorite "breads" are just the corn thins and trader joes makes a brown rice bread. it has oil in it btw. not a lot but it tastes like regular flour tortillas just a little more "yeasty" if thats a description. i've never found a regular GF bread to my liking in all honesty. but over time i dont crave it either. i find the corn thins or lettuce leaves sufficient for sandwiches. i miss oats the most.

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I have only been vegan a few months and I also take a daily multi-vitamin with plenty of B-12 so it's not that I haven't been getting enough B-12. It is that I was not absorbing enough B-12 and other vitamins because of having undiagnosed celiac.

GJ - the reason i mentioned it is that low b12 can be totally unrelated to intake and be due only to absorption issues,which can be very true with celiac. if so, you can be low even if omni or supplementing so would need a b12 shot to correct this. this bipasses the gut. so have you been tested? because it might take your gut awhile to heal. in the meantime, no reason to suffer from b12 deficiency as nerve damage is not always reversible. so get it checked please.

as far as having a "label." if you know whats harming you and the solution, labels are pretty silly. most people dont care anyways. i tried to get into an ED hospital, they did not care if i were celiac or not, i had to eat what was said. lame but true! many people will think you are lying anyways if they are ignorant or trying to be impossible and say cant you have just a little? i mean if you have to walk around with papers showing proof and medical documentation stating why this is so harmful to me, thats pretty lame. i know with how much pain i've been in, i dont care if my label is celiac, colitis, or some mental illness thats causing serious digestive issues. all i know is that i've been bed ridden in pain to the point where i felt i should call an ambulance and suffered bloody diarrhea, thats good enough. i also have trauma issues that make me not want someone cutting up my intestine or probing objects in me especially when i am hurting and not even wanting food to even go through my intestines. so if i can figure out how to stop the pain then i feel like the problem is solved. really i could care less on the diagnosis at this point, only if i need one to know what i should do or what i'm doing is not helping and lost. if i know the cure i'm fine just feeling healthy. if people dont believe me that is THEIR problem not mine. and the next time i get bloody diahhrea i will collect a jar for them and wrap it up as a present if needed, geez. actually i would now just leave the situation and never talk to them again. really, if they dont believe me then thats not a friend i want anymore. i ended up having SIX surgeries on my arm because my ex convinced me i was blowing my arm out of proportion but it was a commuted fracture in 3 places and bone died because i waited too long to get it checked. i dont lie about pain. but now that today i am feeling better i'm not wanting to go back to that pain to prove anything just like someone wouldnt want to drink draino or have someone jab a knife into their intestine, its just too painful. i will slowly add things in as i think its celiac disease that i cant even tolerate GF oats and if other foods work out ok, then i know my answer. if i start getting serious symptoms and AM 100% GF then i know its something else and need further testing.