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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



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 is tough, no way around it.


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    • Hi AWOL, Since you weren't able to complete the 2 weeks gluten challenge for the endoscopy the results are not necessarily reliable.   So to be err on the side of caution I think you should assume you have celiac disease.  Your doctor should not assume you don't have it either since the challenge was not completed.  He has no proof that you don't have celiac disease.  He does have evidence that you have negative reactions to eating gluten though.
    • Hi Ironic Truth, Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago .  I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse. My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself. I was gluten-free for 3 1/2 years and improving. Then  I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this.  Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it. I did see one abstract, I can't get my hands on the full article as you stated their is a link: Dig Dis Sci. 2005 Jan;50(1):126-9. Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus). Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M So I will pursue the path of monitoring the  Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums. Good luck with you Boyfriend he is lucky to have you looking out for him.
    • Hi Sunshine, There is a program called a 504 plan that some schools will follow if you get one approved.  It helps the school identify proper ways to deal with a child's particular needs.  Probably it is helpful to have a 504 plan, but they may require a formal diagnosis for it.  I suggest you talk to the school and ask them about it.  Tell them the situation with the kid and about the stress he would need to go through to get diagnosed.  They may be willing to work with you without a formal diagnosis.   I am not saying you absolutely have to have a 504 plan for him.  School districts vary and some may be more accommodating than others.  A 504 plan may give you certain rights, but I  am no expert on them. The gluten challenge is 12 weeks of eating gluten for blood tests.  The payback for being formally diagnosed is questionable IMHO.  Treatment is the same regardless, eating gluten-free for life.  One thing to be aware of is that celiac disease has a genetic factor.  So he got the gene from one of the parents.  Anyone else in the family could have celiac develop at some point.  So testing every couple years for all family members is a good idea. Welcome to the forum!
    • Thank you everyone. I appreciate all of the information and support.  I am feeling overwhelmed right now and it was really getting me down yesterday. I don't feel so hopeless now. 
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