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Having A Positive Attitude Helps Me

MissyJoy

By MissyJoy
in Coping with Celiac Disease

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MissyJoy Rookie
MissyJoy
Posted

I just have to tell you all that I am thankful for your support and understanding. I love coming here to read your posts because you know what I am going through.

I was just excitedly updating my husband yesterday about how wonderful its been to be "grain free" for about 7 weeks - gluten is not a word he cares about. I explained about how my symptoms have gone away, I have more energy and just feel so much better. I don't even have to take a nap every afternoon anymore! But he hasn't been too interested in my health or recovery. I just thought he was at least aware of the basic facts.

So, he goes to our county fair a couple of hours later and brings me home a FUNNEL CAKE! :o But instead of getting upset or angry, I just had to shake my head and laugh. He just does not get it. So I slipped the funnel cake to my teenage son, and he was glad to eat it for me. I will have to try to explain to him this life long change that I have made a little more clearly, I guess....

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ang1e0251 Contributor
ang1e0251
Posted

Sorry, he's taking it slow. It is hard to get your mind around. I mentioned on another thread how disapointed I was in my sister as I've been on the gluten-free diet for almost two years and this is the first time she's asked me about it. She was shocked that I dx'd myself and wasn't getting a DX from my dr so I could get treatment. When she had a health scare last year, I was researching it in depth to try and understand it and help her. I was disapointed she hadn't even looked up what I was talking about with celiac disease. I've been after her to be tested and she doesn't seem to have the simplest knowledge of the disease. It wouldn't matter so much but her daughter's health is so bad and she is the one who should be on the lookout for it. But my sister is the one with the most influence over her so it probably won't happen.

Sorry for the rant. I guess with your husband patience will be your guide. Of course if he thinks you ate that funnel cake, it will be harder to convince him. Don't you think?

OptimisticMom42 Apprentice
OptimisticMom42
Posted

Hello, I wanted to let you know that we are listening and supporting you!

Is there something else your husband could do for you that would replace the feelings you both used to get from gifts of food?

My BF was with me at the dr's when I was dx'ed and he still didn't believe it. But he's coming around now and even says that he feels better eating more fruit and vegetables and less pasta.

My mom (who probably has celiacs) on the other hand hears white everytime I say black! I told her for years that meat has no carbs. When her dr told her she was diabetic she wrote down "no meat, has carbs" and went out and bought veggie burgers! errrrrr!

Take Care, Ra

MissyJoy Rookie
MissyJoy
Posted
  • Author

I have pretty much surrendered to the fact that I am on my own in taking care of myself - but I am glad that there are people who understand. The important thing is how much better I am feeling.

RideAllWays Enthusiast
RideAllWays
Posted

I totally know what you are going through...my family is not very understanding at all. My mom is getting better but I can't trust my dad to cook dinner. When he cooks dinner for the family I have to hover over him and make sure I can eat what he's making, and that he doesn't cc my food. He doesn't understand my symptoms either, because he doesn't think it makes sense to get a headache and feel really tired from an "allergy". Kind of annoying, but I don't live at home as of last week :)

My boyfriend on the other hand is really good with my celiac. he lives in Portland and I have been down here for a while, and he loves taking me Gluten Free shopping, and we've been checking out a bunch of restaurants. (I highly reccommend Corbett's Fish House!!). He even eats gluten-free while around me so that he can kiss me after :) If only the family could be as careful as him!

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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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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