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Being Cautious Vs Obsession

MollyBeth

By MollyBeth
in Coping with Celiac Disease

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MollyBeth Contributor
MollyBeth
Posted

I love eatnig hard salami on sandwiches. I was happy when I started this diet that gluten free salami is easy to find. I actually havne't found any that isn't gluten free yet. The woman at the deli I go to is always very nice about letting me read labels of lunch meat before I have her slice it. But the other day I started thinking...What about the stuff she puts on the slicer that isn't gluten free? Am I going to get CC'd? So I went and bought some presliced stuff but when I got home I was thinking what if they slice glutenous lunch meat with the same slicer where they process this stuff??? Now I would like to add that I've never reacted to either salami....and now I'll get to my point... When does being cautious turn into just being obsessed?? All these cross contamination possibilities are making my head spin. I've been doing very well with my diet and sticking to it. I don't seem to be super sensitive (I ate like five meat balls on new year's eve that had bisquick in them and all I got was a little gas...it was and accident) so I'm scared that damage to my intestines might still be happening if I am getting CC'd but not reacting. I just don't want to become obsessive... Do any of you that have been at this longer have any words of wisdom?

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ravenwoodglass Mentor
ravenwoodglass
Posted

You are being wise by being supercareful at first. We do seem to have a large range of sensitivity and you will learn what your body can handle in time. Were you diagnosed with blood work or biopsy or both? If you were diagnosed with blood test then the doctor can run the test again every 6 months or so for a bit to check your antibody levels. Your doctor should also have run a baseline panel to test your vitamin and mineral levels at diagnosis. These can be helpful to tell if you are absorbing properly when he reruns them at 6 months. That can be helpful for those who symptoms are mild or who are 'silent' celiacs.

Personally I wouldn't touch something that was sliced on a deli slicer unless I was the very first customer of the day. I have worked in a store that had one and even though we routinely wipe it down after each use you would be surprised what gets caught under the guards. If you have a good relationship with the lady at the deli you might be able to give her a list of what you want and she could cut it for you at the start of the day. I would not worry at all about the prepackaged lunch meat as far as a CC issue goes. I also have never seen a hard salami that isn't gluten free.

dilettantesteph Collaborator
dilettantesteph
Posted

Some of us have to be obsessive not to get sick. If you don't have to be, enjoy!

ang1e0251 Contributor
ang1e0251
Posted

If it's been OK, it is probably still OK. It is easy to start obsessing but sometimes I have to give myself a good hard mental shake to be sensible and not go off the deep end about a product that has worked for me.

kbtoyssni Contributor
kbtoyssni
Posted

I don't think this is being overly cautious. I certainly don't eat deli-sliced meat. Also I've found that over the years this stuff become second nature, and you won't have to think about it; you'll just do it. Once you get your routine down, it won't seem so obsessive, it will just be what you do.

happygirl Collaborator
happygirl
Posted

One of the best things you can do it get followup bloodwork run, to make sure that your antibodies are returning to normal levels. That will help ease your mind to a great degree when you know your body is healing!

MollyBeth Contributor
MollyBeth
Posted
  • Author
Were you diagnosed with blood work or biopsy or both? If you were diagnosed with blood test then the doctor can run the test again every 6 months or so for a bit to check your antibody levels. Your doctor should also have run a baseline panel to test your vitamin and mineral levels at diagnosis. These can be helpful to tell if you are absorbing properly when he reruns them at 6 months. That can be helpful for those who symptoms are mild or who are 'silent' celiacs.

My blood test came back negative and my biopsy came back positive. My vitamin and mineral levels were very low before...that's what made my doc first think I was a celiac. I'm going in to retest my levels in about a month.

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harp1 Apprentice
harp1
Posted
I love eatnig hard salami on sandwiches. I was happy when I started this diet that gluten free salami is easy to find. I actually havne't found any that isn't gluten free yet. The woman at the deli I go to is always very nice about letting me read labels of lunch meat before I have her slice it. But the other day I started thinking...What about the stuff she puts on the slicer that isn't gluten free? Am I going to get CC'd? So I went and bought some presliced stuff but when I got home I was thinking what if they slice glutenous lunch meat with the same slicer where they process this stuff??? Now I would like to add that I've never reacted to either salami....and now I'll get to my point... When does being cautious turn into just being obsessed?? All these cross contamination possibilities are making my head spin. I've been doing very well with my diet and sticking to it. I don't seem to be super sensitive (I ate like five meat balls on new year's eve that had bisquick in them and all I got was a little gas...it was and accident) so I'm scared that damage to my intestines might still be happening if I am getting CC'd but not reacting. I just don't want to become obsessive... Do any of you that have been at this longer have any words of wisdom?

I share your love of hard salami - eat it every day. I always order Boar's Head - but that's beside the point. The deli person always hands me the first slice - maybe I should toss that one as a way to begin to handle contamination. Anyway, I've never had a problem. Almost everyone is ordering Boar's Head at this counter - but everybody is different. Yes, if it's been ok it probably will be ok. This a big topic I think.

MollyBeth Contributor
MollyBeth
Posted
  • Author
Some of us have to be obsessive not to get sick. If you don't have to be, enjoy!

Yes, if it's been ok it probably will be ok. This a big topic I think.

I just don't want this to rule my life. I've always been a bit of a free spirit... I guess I'm having troubles adjustnig to the pre-planning and fore-thought that just goes into a trip to the grocery. Having to think so hard about everything I eat makes me feel obsessive...it's an uncomfortable feeling... I'll figure it out though and make it work! I'm determined!

ang1e0251 Contributor
ang1e0251
Posted

I think we all feel the strain of changing out entire way of thinking of food and shopping. I rebel against it at times still but have a little talk with myself in my head. " Remember, you boob," I say, "You prayed for a healing answer and now you have it. This is a small price to pay for the good health you're experiencing. So get over it!!"

As time goes on, it gets easier. You get into a routine and it's just second nature. Yes, you have to go through the whole learning curve again when in a new situation but it's never as scary as the beginning was. Just think of yourself as a kindergartner in a new school; you have a lot to learn but every day it will be better and better. You have a teacher (us) to guide you and you can even take a nap if it all gets to be too much!!

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      @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.
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      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 😅
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