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I Hate Celiac Disease

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Posted 01 December 2011 - 03:48 PM

As relieved as I was to figure out what was wrong with my stomach. I absolutely hate this condition. It makes me realize life really is not fair! I hate that a crumb has me running to the bathroom, it does not seem natural. I hope all this people without food allergies or intolerances understand how lucky they are. Just needed to vent thanks!
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Hodgkins Lymphoma-2006 at age 18, now 25
Disagnosed with IBS and anxiety (related to my treatment they say)-2007
Allergies to corn, tree nuts, shellfish, bees- 2010
Positive Lupus Anticoagulant-2011
Erosive esophagitis-2011
Severe iron deficiency anemia- 2012
Inappropriate sinus tachycardia-2013
Tested for celiac three times, blood and biopsies all negative
Now encouraged to undergo testing again due to malabsorption

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Posted 01 December 2011 - 03:50 PM

I couldn't agree more!
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Posted 01 December 2011 - 03:57 PM

Well good for venting. At first I thought you said "I hope all these people WITH food allergies or intolerances understand how lucky they are". Then I typed up a huge reply scolding you for not thinking allergies are serious (as I am a sufferer of severe seasonal allergies). Thank heaven I read your post again before I yelled at you. LOL B)
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Posted 01 December 2011 - 03:59 PM

It does really feel that way. This health problem has been life altering for my family and I. Not all bad though.

Hope you feel better about things soon. :)
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Marilyn R

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Posted 01 December 2011 - 05:24 PM

I understand the need to vent, and this is a good place to do it. Hopefully you'll find peace with it. I resented it so much at first, turned my life upside down.

I'm really glad I don't have M.S. or Lupus though, because that's what my doctors were testing for, along with other diseases.

Give yourself a while to deal with it, it gets better. Being pissed off about it at first is normal. With time it gets better or you get used to dealing with it better, and for me it has become a game. The "What Can I Eat that is Absolutely Delicious" game, or "What Can I Cook Quickly That Won't Make Me Sick Game"?

I found a recipe for shrimp marinated in Thai red curry sauce mixed with oil today. You broil the shrimp and serve it over rice with some basil. I get a kick out of growing my own herbs and cook rice in big batches to refrigerate or freeze leftovers, so that was a winner recipe!

I agree, it's not fun, you can't be "normal" with friends and family, but it's good to know what ails you with a fairly easy fix and some pre-planning.
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.



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Posted 01 December 2011 - 06:25 PM

I hear ya Donna! It took a long time to find my new normal and I was all sorts of angry and resentful. Now I am at peace with the whole thing. Of course, as far as problems with Celiac, I've had it easy compared to so many on this forum. I think that if my undiagnosed Celiacs causes future health problems like Diabetes or lymphoma I may cry and be angry at it all over again. Baby steps I guess...

Hugs to you Donna. This place is full of people that know and feel your frustration.
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Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"
Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"
DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!
DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.
Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)



    ńĆeznem da se u Hrvatskoj!

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Posted 01 December 2011 - 06:30 PM

We understand! It took me a good few months to come to terms with my celiac diagnosis. Now it is just second nature. Sure, it can be very difficult in social situations but not on a daily basis. I teach cooking classes so I was not happy making that initial radical change but now have found that more and more people require such classes and information so in a way it is also a blessing. :P

Take the time you need to grieve.
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.



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Posted 01 December 2011 - 07:10 PM

It annoys me sometimes too, although its sort of second nature now, I think after you just get used to it ya know?
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HLA DQ8, gluten-free since January 2011




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Posted 01 December 2011 - 07:34 PM

I thought celiac was a pain until my Hashimoto's got bad. Celiac has an off/on switch, and though I don't much like cooking everything that goes into my mouth and hardly ever eating out, at least I can control it. I feel helpless with the thyroid autoimmunity. :(
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Sarah P

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Posted 01 December 2011 - 09:08 PM

I have been gluten free 100% for a little over a month and I stll have sever pain. Although it isn't consitant like it was, there are still days I feel like I am being stabbed in the back and like I am having a heart attack (although it is on my right side and not the side with my heart :rolleyes: ). Everyone keeps telling me to give it time and I just want to yell at them. I have given up all my favorite goodies and I still feel crappy. So I am their with you!

My docs are still trying to figure out if there are other things going on with me as well. I just wish I could get a complete GI transplant, is that possible???LOL

Thank God for this website right. At least we all understand each other.

Oh by the way I found wonderful Gluten Free cookies in the refrig section of my local health food store. They are the bomb and even my non-gluten family loves them.
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Sarah Pogozelski~ Independent Consultant~ Arbonne International
1 doctor says Celiac, 1 says No Celiac but recommended a Gluten Free Diet. New doctor is going to try to figure it out for me. This is a strange life but the food is getting better!



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Posted 06 December 2011 - 12:13 PM

I just got diagnosed today and am so angry with the world. I feel like i cant have my favorite foods no more will destroy me. Im glad I found this site!
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