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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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      Recovery from gluten challenge

      By Kirita · Posted

      Thank you so much for your response! I have a follow-up appointment with her pediatrician next week, and also an appointment with her pediatric GI Dr. Your message gives me some ideas for questions to ask the doctors. My daughter went strictly gluten-free in January following her first endoscopy so I’m guessing her diet is pretty solid. She is compliant but also reliant on others to make her food (at school and home) but she didn’t have this problem prior to the gluten challenge when she went strictly gluten-free. It really makes sense to me that the gluten challenge inflammation hasn’t healed and I will be asking her doctors about nutritional issues. I ask for anecdotal stories because the research surrounding the gluten challenge seems to be inconsistent and inconclusive (at least what I’ve been able to find!). Thank you so much for your response!
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      Recovery from gluten challenge

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      While the positive endoscopy confirms the diagnosis, it's important to be skeptical of the idea that your daughter will simply "bounce back" to a pre-challenge state. The gluten challenge was essentially a controlled, prolonged exposure that likely caused significant inflammation and damage to her system; it's not surprising that recovery is slow and that a subsequent exposure hit her so hard. The persistent fatigue is a major red flag that her body is still struggling, potentially indicating that the initial damage hasn't fully healed or that her system is now in a heightened state of reactivity. Rather than seeking anecdotal timelines from others, her experience underscores the critical need for close follow-up with her gastroenterologist to rule out other nutrient deficiencies commonly caused by celiac flare-ups, like iron or B12, and to consult with a dietitian to scrutinize her diet for any hidden sources of cross-contamination that could be perpetuating her symptoms. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
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