Confused

[IrishTwins2009]

Hello

 

im hoping someone can give me some input. My hubby has been sick most of his life, as well as my daughter. We are currently awaiting to see a pediatrician for my daughter. We removed gluten, I know now that was bad, but we were so used to doctors dismissing us. My daughter as well as my hubby felt soooo much better and when we reintroduced gluten both of them are back to feeling ill.

My husband has had joint and muscle pain, stomach pain, depression, fatigue, as well as his teeth have many defects, people actually think he is a smoker despite never smoking a day in his life and he gets canker sores a lot. He also has extremely sensitive skin and has "chicken skin". He also has raynauds.

Anyway we got some blood work done, after eating gluten for two weeks.

His Ttg ab IGA ca,e back at an 8 and it said less than 16 was normal, however his Serum protein IGA came back at 1.27. Now the normal range was 0.7-4.00. The IGA was low but not below and I have heard that some people who have an IGA deficiency can have a false negative. 

Our doctor doesn't know much, he said his one number was low. We said that we know he reacts strongly to gluten. My hubby can barely move after he eats it. Our Doctor replied with, well everyone is a little gluten intolerant. 

Has anyone had a "normal" but low IGA and still had celiac or at least an intolerance. I'm feeling overwhelmed because both my hubby and my daughter feel like crap and neither of them enjoy eating gluten. We have no tests yet for my daughter as she hasn't seen a ped yet. 

 

Anyway, thanks for taking the time to read. ?

[cyclinglady]

1 minute ago, IrishTwins2009 said:

Hello

 

im hoping someone can give me some input. My hubby has been sick most of his life, as well as my daughter. We are currently awaiting to see a pediatrician for my daughter. We removed gluten, I know now that was bad, but we were so used to doctors dismissing us. My daughter as well as my hubby felt soooo much better and when we reintroduced gluten both of them are back to feeling ill.

My husband has had joint and muscle pain, stomach pain, depression, fatigue, as well as his teeth have many defects, people actually think he is a smoker despite never smoking a day in his life and he gets canker sores a lot. He also has extremely sensitive skin and has "chicken skin". He also has raynauds.

Anyway we got some blood work done, after eating gluten for two weeks.

His Ttg ab IGA ca,e back at an 8 and it said less than 16 was normal, however his Serum protein IGA came back at 1.27. Now the normal range was 0.7-4.00. The IGA was low but not below and I have heard that some people who have an IGA deficiency can have a false negative. 

Our doctor doesn't know much, he said his one number was low. We said that we know he reacts strongly to gluten. My hubby can barely move after he eats it. Our Doctor replied with, well everyone is a little gluten intolerant. 

Has anyone had a "normal" but low IGA and still had celiac or at least an intolerance. I'm feeling overwhelmed because both my hubby and my daughter feel like crap and neither of them enjoy eating gluten. We have no tests yet for my daughter as she hasn't seen a ped yet. 

 

Anyway, thanks for taking the time to read. ?

Welcome!  

Unfortunately, you have to be on a full gluten diet for 8 to 12 weeks for testing (two to four for an endoscopy). 

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The IGA is only used as a control test in the case of celiac disease testing. The result would have to be almost zero for it to indicate that the TTG IgA test is invalid.  Your husband is not IgA deficient.  

Consider asking for the complete panel, if they choose to go do a gluten challenge.  

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I hope this helps!  

 

[IrishTwins2009]

Thank you. He is going to keep eating gluten for as long as he can and he will redo the blood test. It's just so frustrating seeing him ill and we thought we finally figured out the mystery. 

[cyclinglady]

I understand your frustration.  While I am formally diagnosed (five years ago), my hubby went Gluten Free per the poor advice of his GP some 17 years ago.  The gluten-free diet worked.  There is no doubt that gluten makes him sick, but he wishes he had a formal diagnosis.  He says I have received way more support from family and medical.  There is no way he is going to do a challenge.  We need to pay our bills!  

So, if your hubby can do the challenge, it would be nice, but feeling better may trump a diagnosis.  Only you, as a family, can decide what is best for you. Your daughter is different.  She could use school support.  So a diagnosis might be prudent for her.  

Keep in mind that some celiacs are seronegative or only get one positive on the complete celiac panel (that would be me...only positive on the DGP IgA).  So, if a challenge is done (and maybe your doctor will give a diagnosis based on symptoms resolving),   spend the extra momey the complete panel if possible.  

[IrishTwins2009]

Thank you so much. It can feel so disheartening when we were so sure and to be met with negative results but I don't believe it was a full panel and he didn't eat gluten long. It also appears our GP doesn't understand celiac. We don't know if it's even celiac, but taking gluten out was the only thing at has ever brought relief other than pain meds for my hubby.

I appreciate you taking the time to comment. ?

[cyclinglady]

His symptoms certainly could be due to celiac disease.  The problem is that many autoimmune disorder symptoms and other illnesses can often overlap.  He already has one — Raynauds.  Our daughter has it.  Sunny Southern California and she wears wool socks year round.  Blue fingers are a bit disconcerting!