Next steps after tTG-IgA Ab test

[Waltzferret]

Hi, My 68 year old husband has been coping with severe anemia for a year. An endoscopy and colonoscopy came back normal, although neither involved a biopsy. He has had long term diarrhea and stomach distress. In the last three months he lost 15 pounds without trying to do so. He has also recently tested low in folate. Recent lab work indicated his tTG-IgA Ab level was high. His family physician has suggested a gluten free diet. He has not been feeling at all well and we are uncertain if we should quickly see if he improves on a gluten free diet or if we should make an appointment with a gastroenterologist and have further testing. Our concern is that his current health is not good and it will likely be a period of time before a gastroenterologist can see him. 

[cyclinglady]

I am sorry that your hubby is sick!    

I am not a doctor, but I would agree that a gluten free diet is probably his best bet for improving his health.  Waiting for an endoscopy to obtain biopsies does not seem necessary at the age of 68.  But....it is important that he maintains the diet for at least six months to determine if it is working.  The gluten free diet is hard.  I'm not going to sugar coat it.  It is doable, but the learning curve is steep.  Check out our Newbie 101 section for tips under the "Coping" section of this forum.  Gluten can be hidden in unlikely places like soy sauce.  Cross contamination is huge (hubby and I are both gluten free and so is our kid within our home.  She eats gluten at school).  

We (the folks here on the this forum who walk the walk) recommend avoiding all processed foods in the beginning and that even includes gluten free items (which are just junk anyway).  Do not eat out unless it's a 100% gluten free restaurant run by celiacs!  Take risks once he feels better.  Eat fish, meat, veggies, fruit, nuts, cheese, dairy.  Though many celiacs have issues with lactose that often resolves depending on your genetic make-up.  

Make sure all medications and supplements are gluten free.  I am extra careful and only purchase certified gluten-free supplements.  Call all drug companies to confirm that medications are gluten free.  Yep, drug companies do not have to follow the same rules as food companies.  Sad, but true!  

I hope this helps!  I was anemic (severely) too.  I was able to feel better within three months of being gluten free.  

celiac disease is genetic.  All first-degree relatives should be tested even if they are symptom free.  

I was diagnosed three years ago (took about two years to really feel well even after my anemia resolved.  Lots of little things that I just thought were related to old age!), but my hubby went gluten free 15 years ago.  It worked for him.  That first year was tough.  He'd be the first to say that I have had it easier with my formal diagnosis.  He could do a gluten challenge, but there's no way he's going back on gluten .  We know it makes him sick.  So, he either has celiac disease or Non-celiac Gluten Intolerance/Sensitivity.  Either way, he needs to be gluten free.  

I wish your hubby well!  

[Waltzferret]

Thank you for such a thoughtful and complete reply. We have an adult son with autism and thanks to your advice, I'll ask his doctor about testing. I'm very grateful for all of your suggestions.