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Next Steps For Husband?

peppyking

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peppyking Apprentice
peppyking
Posted

My three year's blood tests showed high levels of antibodies on all celiac tests, and we are awaiting her biopsy results (taken today). My husband seems to be very symptomatic with cramps, diarrhea, gerd and brain fog. However, his blood tests were normal. He was on "gluten lite" for a 2-3 weeks before the blood tests, not no-gluten but definitely reduced with occasional cheats. With the research we have done since my daughter's blood tests, I understand that his dietary change could have led to a false negative. Should he go back on gluten consistently and retest or do a biopsy? Should he just go gluten free?  (as we are now officially gluten free inside our house, for my three year old) His preference is to just go gluten-free 100%. My concerns are that he might be inconsistent without a sure diagnosis. Further, my thinking is that if he does have celiac disease, it would resolve some of his related medical issues with time, and may impact how he chooses to treat those things now.

 

For example, his GI surgeon wants to proceed with surgery for GERD, some type of metal sphincter, as that existing damage will still be there even if GERD improves due to no-gluten. Is that true? Or might some of the damage improve in time with a gluten free diet?

 

So confused and not sure where to start.

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SMRI Collaborator
SMRI
Posted

What are his numbers and which tests did the run?  Define "gluten light".  You just need to have about a piece of bread a day for the tests to register.

mamaw Community Regular
mamaw
Posted

You know  your  husband  so if  you  think  he  would  cheat  without  knowing  for  positive testing  then  by all means  I  vote  for  him  to  eat  a loaded  full gluten diet  for  at  least  a month then  retest.... He  should  be  consuming  as  much  gluten as  he  can for  testing....&  if  it  were  me  I would  not  do the  surgery  until after  his  gluten testing  is done  as  he  may not need the  surgery  at  all....

Another  thought  is  he  could be  NCGI  & there  is no test  at  the present  time  for  that  just  an elimination diet for  at  least  three  months.....so  he  actually  could  do this  either  way  but  still  would not  have   the  knowledge  of  knowing  for  positive  if he is celiac.. if he chose the  elimination  plan....

Solandra Rookie
Solandra
Posted

I'd have to agree with more testing! Since I'm not really sure of mine, I'm eating gluten again and getting retested, too. I think it would be so much easier to be sure, otherwise, he could be like me and be like, "WELL I really want that ____ and since I'm not sure, I might as well..." It's not the easiest thing to do 100% without having a good reason.

BlessedMommy Rising Star
BlessedMommy
Posted

Yes, I vote for gluten challenging and retesting too. I manage to be strict on my diet with no diagnosis, but then again, I have dangerous symptoms. If someone had only mild symptoms, cheating could be a lot easier.

 

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    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

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      Seeking advice on potential gluten challenge

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    • JudyLou
      Seeking advice on potential gluten challenge

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      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
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