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Still Sick, What Do I Do?


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21 replies to this topic

#16 dana_g

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Posted 25 June 2004 - 05:52 PM

Sara, I'm glad you figured out why you were still feeling bad after being gluten-free. Please don't assume that all celiacs are in the same position you are in. Many people who post to this message board do so when they are having a problem, not when they are feeling well. You may want to amend your recommendation that all celiacs try eliminating all grains from their diets--I have NO continuing symptoms, and contrary to your statement, I NEVER cheat. I have absolutely no reason to eliminate anything from my diet, as I am fit as a fiddle, and feel fantastic. If somebody asked me what I eat to stay this way, I would tell them, but I would never challenge anyone to try my diet for any length of time--food is WAY too emotional an issue for celiacs, and it is hard enough for most people to adapt to living without gluten. I'm familiar with the diet you mention, and I think it has some real merit. I just don't think everybody who has celiac disease needs to be on it. Again, let me congratulate you on finding something that works for you.
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Gloriously gluten-free--Dana

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#17 lisabarella

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Posted 25 June 2004 - 06:10 PM

Interesting! I just read Gottschall's book, 'Breaking the Vicious Cycle' where they elaborated on the SCD. I found it fascinating and was thinking of trying it myself.
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Lisa A. Barella, PhD
Reno, NV
Confirmed Celiac by biopsy - July 18th 2003
4 people in family with Celiac Disease (mom, two brothers, me)
lisabarella at hotmail dot com

#18 tsomo

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Posted 01 July 2004 - 09:04 AM

[COLOR=blue]Hi, Like Sara suggested, I think you have further food sensitivities. I went off gluten and dairy and rice and corn and soy. I got a similar reaction when I ate corn or rice as I did when I ate wheat gluten. Once you eliminate the gluten you will notice that other foods affect you adversely and these need to be eliminated also.

Tsomo

Thats not "crazy" its just common sense. If something gives you symptoms dont eat it.

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#19 dana_g

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Posted 01 July 2004 - 03:40 PM

By the way, let me just say that I have a "gluten reaction" when I eat soy or corn, I'm not sure which yet, since I've only recently added them and did so at the same time--serious allergic reaction, hives, diarrhea, stuffy nose, etc. I'm seeing an allergist in two weeks. The illegal foods on the SCD that aren't soy or corn related haven't given me any trouble...yet! One thing I've noticed since being gluten-free, and I'd like to know if anyone else has had the same experience, is that I've become more sensitized to potential allergens as time goes by. Before going gluten-free, I used shampoo containing hydrolyzed wheat protein with no problem. A few months after going gluten-free, it made my scalp tingle uncomfortably. A few months after that, it made my scalp BURN horribly. Just putting it on my skin for a few seconds leaves a nasty red mark!
I think that before I went gluten-free, my immune system was overwhelmed with gluten, and now it has the opportunity to weird out over other stuff. Soon I'm going to be down to not too many things on this diet of mine! But I know you guys have great suggestions for recipes and lots of encouraging words, so I'm not going to worry about it...too much. Except that I only eat three things that have more than two ingredients, and if I'm allergic to soy or corn or both, it will wipe out two of them! Sounds like I'm going to have to expand my menu big time...
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Gloriously gluten-free--Dana

#20 Sara Lydia

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Posted 02 July 2004 - 03:00 AM

Dana- you're right... food definitely is an emotional issue. I have found in being with a few Celiac support groups that the "food issue" drives most of us insane and is 80% of the daily struggle with Celiac Disease. Not 'EVERYONE' who has celiac disease needs to go on the SCD diet. But for those, like me, who have continued to experience painful symptoms while gluten free, its an easy way to find out what else you're sensitive to. Alot of gluten-free recipes and goods contain high amounts of rice and corn starch, which I have discovered my system cannot tolerate- just within 2 weeks of the SCD diet. My suggestion was not geared towards Celiacs who are doing well gluten free, or have already found the solution. Smaller things such as Xanthum Gum, fruit skins, corn syrup, fructose and dairy products followed in the discovery.

Not only am I able to start adding things back in now, but I feel so much more educated on product information, cooking, and label-reading. Even if you dont go on the diet, the book is educational to read because it talks about the relationship between bacterias in your stomache and the immune system.. and how it all cycles back to the brain.

It seems that the only thing i struggle with now is still, the ongoing, restaurant gatherings with freinds! And those who are not too sensitive to my situation. But if thats all I have to worry about now, I'm thankful.

Good luck to everyone!

Sara
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#21 kalo

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Posted 02 July 2004 - 08:14 PM

Will following the SCD eliminate the need for the Elisa food test from yorkallergies? I'm thinking of doing that when I get some money set aside.
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Hugs, Carol B Enterolab diagnosed gluten sensitive and casein allergic June 04

#22 dana_g

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Posted 03 July 2004 - 09:36 AM

Sara, don't you think it's ironic that I wrote how I didn't think I needed to be on the SCD, then I started having reactions to soy and corn?! How funny! That'll teach me! I did a "soy challenge" last night--ate some grilled tofu, it was so yummy--and I started to break out in hives in 15 minutes! I downed some antihistamines fast, and slathered on the cortisone. Today I feel hungover and my gut is, shall we say, not happy. But I'm relieved to be narrowing down the field. I will try the same thing in a few days with corn. Really hoping I'm okay with that. My saga continues...
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Gloriously gluten-free--Dana


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