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I've been trying to adhere to a gluten-free for two months after it was suggested by a dietician. The information on this site is just great, I've learned so much and it will be a great help. I think I'm going to do the Enteron tests and see what they show - I think I'd slug a doctor who wanted me to go back on gluten so they could tell for sure, I've felt increasingly worse for 23 years (51 now), I don't ever want to take a step backwards.

I'm amazed at the number of people describing situations similar to mine:

told it was IBS

depression

fatigue

doctors that don't listen

joint pain

sleep problems

Been looking for a miracle for years, maybe I've found it.

Do you people eat at restaurants - or just at home?

I think giving up pizza and deserts is the toughest for me so far - my Mom is/was a fantastic baker, a bakery nearby makes eclairs so good I salivate at the thought of them - I'm really going to have to learn to bake.

Reading the posts at this site is a great help - thanks again

Phil the Scrawny One

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Hi Phil:

I think you have made a wonderful decision by taking charge of your health!

I also think Enterolab is a great idea :) . That is how I was diagnosed after suffering for years only be told I had IBS.

I eat at home most of the time. If I have family gathering I prepare mine and my daughters food and we take it with us. We eat out about once a week. I only go to places I KNOW has a gluten-free menu and food that I know I can tolerate by trial and error. I eat at Wendy's, Chick-Fil-A and Outback Steakhouse. I have not had any trouble with any of these places other than the salad dressing at Outback, it was just a little to spicy for me :D If you have an Outback near you they have an AWESOME gluten-free brownie dessert! It is YUMMY!!!!

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Hi, Phil!

Let's hear it for forward progress! Like you, I feel like maybe I have finally found the key that will allow me to unlock my full potential as a human being, and no one could pay me enough to convince me to go back on gluten for testing!

Right now I eat exclusively at home except when I am traveling, and even then I take as much food with me as possible. Either I have gotten EXTREMELY sensitive to gluten in the past month or so, or I have some temporary intolerances (besides lactose) that I haven't figured out yet. I haven't found a good pizza recipe yet, but I have found a couple of delicious cookies. One is a (vegan!) gingerbread cookie; the recipe is here. The other is a fruit-filled bar cookie with a crumble topping that I adapted myself from a regular recipe, and I will post the recipe as soon as I get a solid block of computer time without my baby trying to climb on my lap! These cookies really help me feel less deprived of the good things in life.

I hope you find some emotionally satisfying foods in short order, and that you continue to feel better each day!

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I feel just as you do Phil, there are great people on these boards that can help with the bad and share in the good. I think being a person that has gone through what we have really adds to our overall character! :wacko::P

Seriously, what doesn't kill you...o.k., it almost killed us all, but we are still typing so...

Glad your here, glad we are all here and can help each other.

As far as restaurants go, I have gone out to eat only a couple of times since going gluten-free, but I'm still not sure what is doing what yet. My immune system is so shot that it is hard for me to tell when I have a virus or if it is gluten that is causing suffering. It also depends on how desperate you are to feel better, I am limiting any potential mistakes because I can't live like this any longer. If your not too bad off and the risk is worth it, then o.k., but there is always the chance that even if you have eaten there before there will be cross contamination from a cook or whatever...it is tough, no way around it.

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    • You're welcome! Yes, I too, hate waiting for lab results. Ugh!
    • I understand this is not a doctor's office and that I need proper testing done to rule out Celiac disease, however, I am stuck waiting until November to even see a GI doctor. So I need some suggestions soon on which test to go for first and what to do as I wait. Also do note, I am 28 years old.

      Right now, the most suspecting culprits to my symptoms have been Gallbadder, Celiac disease, and IBS. I have also been recently diagnosed with pre-diabetes and I am obese.  My Ultrasound and CT scan have all come up as normal and no signs of gallstones. However, I was in extreme pain as my upper abdomen was examined during the ultra sound. My white blood cell count also seems to be high at 12,000 but all blood work came back normal for liver and everything else.

      Symptoms included are: diarrhea
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      light gnawing pain in area a few inches above belly button
      burning in chest
      sometimes pain below upper right rib cage.
      Tenderness all around the upper abdomen, but more so on the right and center.
      burping frequently after meals
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      bloating in abdomen The pains used to come and go for the past few years as something very mild, but then the yellow stools happen at least four months ago and at a constant rate. Everyday it is either yellow or orange.  Sometimes the stools are lose and other times they are not. Two months in, I was finally diagnosed with pre-diabetes and have been having a strict low calorie and non fatty diet.

      So far the upper right pain has subsided but the pain above my belly button would continue. The gassy and bloated feeling would come and go as well. I get severe heart burn after almost every meal. But I felt it especially after eating whole wheat sandwiches or whole wheat pasta. I however don't feel it when I eat a Nature Valley granola bar, or pack of peanut butter crackers. I also had a chicken and vegetable stir fry with soy sauce cooked in that also had little effect on me. A bowl of cereal also made the heart burn act up pretty bad. I sometimes feel numb or light headed after various meals. Especially larger ones. In fact, it seems the more I eat, the worse I feel. But the less in the stomach, the more the pain above my belly button starts to act up.

      It is usually in the morning and afternoon I feel the most with gas and bloating. Especially after any large meals from the previous day. Despite the diet and work outs I have had, nothing has changed the stools. However, taking fish oil pills has greatly reduced the pain in my upper abdomen as well as the pain  in the the area above my belly button. My question now is, is there a very likely chance of this being celiac disease? Should I go on a gluten free diet to test since I Have to wait so long? Also, which test should I ask the doctor for first, as it will take a GREAT deal of time to pay off each one. Colonoscopy, HIDA scan, or endoscopy. 

      Again, I understand this isn't a site to get compete medical advice or to know exactly what my illness is, but I am trying to narrow down the possibility or what is most likely. If this has a chance of being celiac disease, I would rather know sooner than later.
    • Thank you very much for all the info Squirmingitch. The doctor told me as we were talking he was going to order some tests with urine so I don't know why he didn't mark that. Maybe he forgot as we were talking? Duly noted about the bladder Cancer to watch out for too. Doctor said it will take about a week to get the lab results back usually from this lab. The wait will seem like forever I'm sure. Yes I will press to have the other tests done too if this one comes back negative.
    • http://www.cureceliacdisease.org/screening/ Was your hubs tested for total IgA to see if he's IgA deficient? Read this thread: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83660
    • Yes, bone density problems are all part of the celiac "umbrella" so to speak and yes, osteoporosis tends to happen more rapidly and at earlier ages than normal when malabsorption is happening. At age 43, it's not normal to have osteoporosis as you describe so that's another part of the jigsaw puzzle. Time to receive blood test results back from the doc are entirely dependent on the particular lab they were sent to. Yep, it's time for you to start keeping a very close check on the PSA in light of your father having had prostrate cancer. I would think you should get a PSA every year. I really would have liked to see him do a urinalysis. With the prostrate cancer your father had, it would seem a close watch should be kept on you for bladder cancer as well. The first symptom of that is blood in the urine but it's generally microscopic before you're ever able to actually see it. That happens to be the 8th most common cancer in men & it's moving up in the rankings. I know this because my hubs had it. The good news is that it's also one of the easiest and most successfully treated provided it's caught early. Certainly starting @ age 50, men should see a urologist every year. BTW, in the last year before I found out I was celiac, I turned up with microscopic blood in my urine. I got it checked out thoroughly since I know about bladder cancer & all tests, ultrasounds, cystoscopy, CT scan etc... turned out fine. The docs were stumped & finally said, "apparently that's just what your body does". Guess what? That's not "just" what MY body does. Once I went gluten-free, I have had no more microscopic blood in my urine. Interesting eh? Before now I didn't realize you are in Canada. The doc didn't do the full celiac panel but I understand the initial screening protocols in Canada only order the TTG but if that comes back negative be sure & press for the full panel as cyclinglady said. We have several here who tested like cyclinglady so it's not a rare thing, it's just not the norm. I'm glad he's doing the B-12 & Ferritin -- those can be big clues.
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