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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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    • Good luck with all the testing.  You are doing the right thing by telling your son to gluten up!  Buy him one of those gluteny cakes at a bakery...if that doesn't spike his numbers, nothing will. 
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    • HIV doesn't turn off the immune system, it destroys it to the point where most people die from complications that arise from having no immune system.  Some end up with pneumonia or cancer, which takes their life. It is pretty amazing the treatments they have developed for it, to slow it down and give people longer, quality time. I am perfectly content with the gluten free diet as my treatment and honestly, if they developed a pill that they claimed would make it possible for people to eat gluten again, I doubt I would. I could not bring myself to eat a food that I am genetically programmed to not be able to digest and that totally pisses off my immune system.  However, if they succeed with some of the meds they are working on now, one of which I posted about earlier this summer, I would take those.  They are working on things that modulate the immune system down so inflammation can be tamed down further.  Even with a strict gluten-free diet, there will always be more inflammation for us than for those who don't have AI diseases.  I do everything possible to tame it down myself but it isn't in the normal range.....yet. Long term inflammation can kill you so something along those lines would be welcome.  You would still have to eat gluten-free but the disease activity would be calmed down.  This is a drug that targets those with lupus and maybe Sjogren's....which I have.  There are possibilities for other AI diseases from that!
    • Hi Anns and welcome   Do you think that I am on the right course to see if I possibly have Celiac?   Yes, it was smart of you to consider the possibility and its good that you've had the tests. Both the aneamia and bloating are symptoms, although of course they may be unrelated. Best way to find out is to check as you are doing.   Can this develope later in life ( I'm 46)?   Yes, I think its most common discovered later rather than sooner.   I ate a meal last night that was gluten free and did not feel like nearly as bloated after eating, would I notice a change that quickly?  Thanksort for your input.   Yes, I noticed far less of a heavy feeling after eating very soon after diet changes. However you would be better off not trying gluten free just yet. I collected some links and other stuff here, it may be of use: Your best bet is to eat as normal and wait for the test results. If your doctors eliminate celiac there's nothing to stop you excluding gluten at that point to see if it helps. But before then you need to keep eating it to ensure an accurate diagnosis.  All the best  
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