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3+ Months. Hope.

ABQ-Celiac

By ABQ-Celiac
in Coping with Celiac Disease

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ABQ-Celiac Rookie
ABQ-Celiac
Posted

I'm a 50+ year old man. For more than 4 months I suffered severe nausea and diarrhea. After countless tests of various types, I scored >225 on both antibody tests. Before we did an endoscopy, I switched to a gluten free, dairy free diet.

The first 10 days were terrific. I felt a lot better immediately. But then for 2 months I had good and bad times. The nausea still sometimes chased me to my bed where I would spend 3-4 hours 5 days of the week. And certain fatty foods still made me sick, even gluten free.

Over the past month I've had more improvement. I have now had 12 days nausea free, and the diarrhea has stopped.

I'm getting used to the limited dietary choices - thank God for bacon and eggs! - and I feel better by miles from before I was diagnosed and in fact for years before.

My gastro tells me I've probably suffered stomach upset for years because I was undiagnosed. (More toast and crackers, I used to say when I was first sick, and of course that made me worse.)

It's a pain. Eating out is hard. Traveling can be nearly impossible. But Glutino nutrition bars and Mi-Del cookies have saved me on the road many times! Rice, ahhh, the most important meal of every day.

I don't wish this on anyone; it can be severely limiting. But feeling good is the best revenge on the damn gods of celiac.

Everyone, hang in there, especially those of you new to the diagnosis.

Good luck!

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Takala Enthusiast
Takala
Posted

Wonderful post ! Hope you continue to improve :)

1desperateladysaved Proficient
1desperateladysaved
Posted

Best of health to you. A car oven is wonderful when one is on the go. I can cook porkchop, hamburger, or likewise with veges in mine!

Diana

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    • knitty kitty
      Severe severe mouth pain

      By knitty kitty · Posted

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    • 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

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    • 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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