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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:

Open Original Shared Link

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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      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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