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Bad News, Guys

K8ling

By K8ling
in Coping with Celiac Disease

Recommended Posts

jackay Enthusiast
jackay
Posted

Sorry to hear of your loss. Do keep pampering yourself. You are worth it!

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Momto2Boys Rookie
Momto2Boys
Posted

I haven't been on this board very long so don't really know many people, but I saw your post and wanted to send big hugs to you. I'm so sorry to hear your news. Take care of yourself and give yourself time to grieve. Things to happen for a reason but when you are in the midst of them, it still sucks! So big hugs to you and definitely get some pampering!

Dellers Apprentice
Dellers
Posted

Big huggs x Like many I have been there myself. be honest with yourself on how you feel. This is not your fault ! celiac disease or not.

CarolinaKip Community Regular
CarolinaKip
Posted

We lost the little bun in the oven :( We'll start trying again when the man gets home from his deployment .

I'm ok, just eating frosting out of the container LOL. It's hard but I am thankful for the gluten free junk food you guys have showed me XD.

My thoughts and heart go out to you! I lost a baby before I had my son and daughter....((((((Hugs)))))

precious831 Contributor
precious831
Posted

We lost the little bun in the oven :( We'll start trying again when the man gets home from his deployment .

I'm ok, just eating frosting out of the container LOL. It's hard but I am thankful for the gluten free junk food you guys have showed me XD.

Oh no, big hugs to you, I'm so sorry for your loss.

K8ling Enthusiast
K8ling
Posted
  • Author

Thanks for all the help coping, guys. Making the phone calls was SO hard...Especially because my husband was gone. But we talked about it and if we wait until May, between his class date and deployment we can get pregnant and I'll only be alone for the first 6 months. I can handle that.

So hopefully it works!!

BethM55 Enthusiast
BethM55
Posted

Thanks for all the support! We were pretty disappointed. It was worse on me because I saw it yesterday in an ultrasound and then today it was just gone. I have some GREAT pain pills and my husband took it pretty well (although he wants to try again when he gets home and so do I and we know it's just our parent sides being impractical). Anyway, I was asking the doctor if maybe my Celiac had something ot do with it and he said that being diagnosed could have messed with my hormones a bit. My body had to make some adjustments. So I am staying off birth control to let my body adjust. I told my husband it's HIS turn to worry about birth control LOL.

Thank you all so much. I am sure once my percocet wears off and my Pamelas Ginger Cookies are gone I'm going to be pretty sad. TOmorrow I booked a massage and I'm going to spend the day pampering myself while my son is at school. It's messed up that I still will have symptoms of pregnancy for up to a week. ALso, I have a baby bump (it's tiny but there) and I get sad whenever I see it.

Hmm...I think it's time to move onto snickers LOL.

Hugs, K8ling. You are doing the right things, taking care of yourself. Chocolate and massage help soothe many problems.

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LYNN21 Newbie
LYNN21
Posted

So sorry for your loss:( I also lost one after my daughter was born and it was not easy, but what helped me get through it was I was also happy that as a women my body did exactly as it was designed to do. Our bodies knows when things are not right. Enjoy your frosting and massage and look forward to trying again. Good luck

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  • Posts

    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • 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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