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Husband's celiac getting worse!!

mom0511x2

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mom0511x2 Newbie
mom0511x2
Posted

My husband (59) was diagnosed with moderate to severe celiac about 2 years ago after years of stomach issues, diagnosed both by blood as well as biopsy.  He is completely adherent with his diet, although there have been a few minor exposures while we were learning!  But now, after these past few years he has started to feel worse, his panel for celiac is again, high, high, high, in addition to now having a high HGB A1c and TSH.   I am at a total loss as to how to help him beyond the diet he has been on for two years. We are waiting to get an appt with a nutritionist since his dietary issues are becoming very complicated!   If anyone has any suggestions I would be very appreciative!!!

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kareng Grand Master
kareng
Posted

There is a thing called refractory Celiac.  But it seems to be very rare.  Before they diagnose with that, they do an extremely strict gluten-free diet.  Often that takes care of the issue and the person will heal enough to go back to a "normal gluten-free diet".  Have they re-biopsied to see if he actually has damage?

Here is a good explanation:

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ravenwoodglass Mentor
ravenwoodglass
Posted

Sorry you folks are going through this. Do read the Newbie 101 thread at the top of the Coping section to make sure you are not missing anything that needs to be done to keep him safe. Unfortunately being gluten free involves much more than just picking gluten free foodss. We have to be careful of how food is prepared, have our loved ones brush their teeth before kissing if they eat gluten, check all meds and supplements to be sure they are gluten free and make sure we have our own toasters as just a few examples.

I am going to keep my fingers crossed for you both that gluten is simply sneaking in somewhere and that it is not refractory.

Welcome and I hope he is feeing much better soon.

etbtbfs Rookie
etbtbfs
Posted

You should avoid all highly-processed foods, as well as foods beside gluten that commonly provoke allergy (dairy, soy, possibly shellfish, there are others).   Once you are sure he is gluten-free, then: support his thyroid.  It is essential that he get enough T3+T4 because thyroid hormone is essential for digestion.  Put him on a comprehensive supplement program that includes probiotics.  Give him a good digestion support formula, such as "Complete Digestion".  Check all nutrition levels, esp. items like B12 and ferritin.  Make sure his total blood protein is checked, and if it is low, put him on free essential amino acids.

cyclinglady Grand Master
cyclinglady
Posted

Here is an interesting study.  It supports what Karen mentioned about hidden gluten:

Open Original Shared Link

Please make sure all supplements, including probiotics are gluten free.  I would choose only gluten-free certified versions until he has improved.  

 

 

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    • trents
      Fiber Supplement

      By trents · Posted

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    • Trish G
      Fiber Supplement

      By Trish G · Posted

      I was taking Benefiber for my IBS-C before my celiac diagnosis. It does say Gluten Free but lists Wheat Dextrin on the label. I really dont like psyllium fiber, so is there anything else I can take or is the Benefiber really ok for someone with Celiac disease?  Thanks!!!
    • kpf
      ttg iga high (646 mg/dl) other results are normal

      By kpf · Posted

      Abdominal pain and an itchy stomach were the symptoms I asked to see a GI about. Now I’ve learned these other symptoms—that I have but attributed to other issues—could also be related to celiac disease:  fatigue joint pain canker sores numbness or tingling in hands or feet difficulty with coordination anemia headaches neutropenia I never dreamed in a million years she would consider celiac disease. It was a shock to me. It’s definitely not what I went to her for. 
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    • trents
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      What are your symptoms? What has brought you to the point where you sought celiac disease testing?
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