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mom0511x2

Husband's celiac getting worse!!

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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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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:

http://www.thepatientceliac.com/2013/03/04/the-gluten-contamination-elimination-diet/


 

 

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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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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.

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

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/pdf/1471-230X-13-40.pdf

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

 

 


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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