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ElizabethN

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loco-ladi Contributor
loco-ladi
Posted

For starters I am "newly diagnosed" (miss diagnosed for at least 6 years that I can tell so far but thats another topic...) and just learning to deal with my "new" diet.

I am a railroad engineer and have to cart all my own food with me when I go to work. I have a Conductor who goes with me and its common practice to bring something to share with the other crewmember. I have learned to get out my "food offering" early in the trip and mention its "gluten free" (last trip was chocolate chip cookies which I need more of as they were almost good, lol) that leads to the inevitable what kind of diet are you on which I reply about my "food allergy" in as great detail as they want. this relieves me of saying no thanks alot of the times as when they hear the basics they can normally determine I will not be eating their "offering". This actually paid off numerous times recently, but as I work with alot of the same people trip after trip some have actually made a effort to bring something I can eat! It has also lead to 2 recipes 1 of which I could use and one fellow engineer heard of my problem and as we are somewhat friends actually on a recent trip to a nearby large city stopped at a health food store and brought me home a bag of "goodies".

I bring bleach wipes with me as well and have gotten in the habit of wiping down everything I will be touching, I dont know if this will help but it makes me feel better.

A fellow employee recently retired and the trainmasters (supervisors of sorts) bought him a retirement cake which they offered me a piece of, my reply was, sure I'll take a piece as long as you promise to give me the day off for being sick, they decline the day off, I decline the piece of cake!

My husband does his best to eat foods I can't while at work or when I am gone and does his best not to mention when he went out for chinese food as that used to be my favorite.

Right now my biggest issue is buying the food! we do not have anything locally that will even special order things I can eat and the closest healthfood store is 60 miles away and has a total of 2 four foot shelves for me to chose from. I have started looking online for more choices and hopefully better prices! Any suggestions would be welcome.

Lynn

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      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem. Just a few other thoughts. I had debilitating anxiety prior to my diagnosis. I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice: for depression, The Depression...
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    • knitty kitty
      Severe severe mouth pain

      By knitty kitty · Posted

      @Charlie1946, There are many vitamin deficiencies associated with PCOS and Celiac disease and mental health issues.  The malabsorption of nutrients caused by Celiac can exacerbate PCOS and mental health issues. Vitamin B 3 Niacin (the kind that causes flushing) improves sebaceous hyperplasia and PCOS. (300 mg/day) Vitamin B 1 Thiamine improves dysphagia, and with Omega Threes, Sjogren's, and PCOS.     (300 mg/day) The other B vitamins are needed as well because they all work together like an orchestra.   The fat soluble vitamins A, D, E, and K, are needed as well.  Low Vitamin D is common in both PCOS and Celiac and depression.   Deficiencies in Niacin Thiamine, Cobalamine B12, Folate B 9, Vitamin C, and Vitamin D can cause mental health issues.   I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants.  My mental health issues didn't get better until my vitamin deficiencies were corrected and a gluten free keto/paleo diet adopted.   Though blood tests are not really accurate, you may want to get tested for deficiencies before supplementing, otherwise you'll be measuring the vitamins you've taken and blood tests will show blood levels that are too high. Yes, Thiamine TTFD and the other vitamins are available over-the-counter.  A B Complex with additional Thiamine TTFD and Niacin made a big difference to my health.  I follow a paleo diet, and make sure I get Omega Threes.  I took high dose Vitamin D to correct my deficiency there.   I've run through the mental health gamut if you would like to talk about your issues.  You can personal message us if you would be more comfortable.   Interesting Reading: Nutritional and herbal interventions for polycystic ovary syndrome (PCOS): a comprehensive review of dietary approaches, macronutrient impact, and herbal medicine in management https://pmc.ncbi.nlm.nih.gov/articles/PMC12049039/
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem.   Just a few other thoughts.  I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter.  If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous. If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve? I do hope that you find relief soon. Cristiana
    • trents
      Severe severe mouth pain

      By trents · Posted

      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @knitty kitty are you kidding?  I had no idea about the casein!! No one ever mentioned that to me at all!! I basically live off that milk! I have also wondered if I have Sjorgen's , but I haven't been to the doctor yet. Can you get the TTFD over the counter? I do have dysphasia and I have lysine I just haven't been good about taking it. I am so glad I found this group and all of you with all this helpful information!! I thought I was going crazy!!  I have sebaceous hyperplasia too- is that related to Celiac?  OH , and I wanted to ask if there is a site where I could find information on mental health issues , with celiac safe facilities??
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @trents, Hi, thank you for the reply, I used to be pretty good at taking my vitamins and supplements, because I also have PCOS, I have Barrett's esophagus, it's just too expensive to have it stretched all the time, and I also get kinda panicked when trying to swallow pills because of getting choked a lot before.  I think maybe the thrush made it worse, I just can't figure out why I can't get it to go away 
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