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I Hate Celiac Disease

DonnaMM

By DonnaMM
in Coping with Celiac Disease

Recommended Posts

DonnaMM Explorer
DonnaMM
Posted

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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GFreeMO Proficient
GFreeMO
Posted

I couldn't agree more!

Booghead Contributor
Booghead
Posted

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)

gary'sgirl Explorer
gary'sgirl
Posted

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. :)

Marilyn R Community Regular
Marilyn R
Posted

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.

sahm-i-am Apprentice
sahm-i-am
Posted

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.

love2travel Mentor
love2travel
Posted

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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beebs Enthusiast
beebs
Posted

It annoys me sometimes too, although its sort of second nature now, I think after you just get used to it ya know?

Skylark Collaborator
Skylark
Posted

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. :(

Sarah P Rookie
Sarah P
Posted

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.

ScarlettsMommy Explorer
ScarlettsMommy
Posted

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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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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      High DGP-A with normal IGA

      By rei.b · Posted

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